The banner headline on the homepage of the Michael J. Fox Foundation’s website reads “Breaking News: Parkinson’s Disease Biomarker Found.” It sounds exciting, but what does it really mean?

Debi Brooks, CEO and cofounder of The Michael J. Fox Foundation, joins Larry Gifford for a chat about what she says is the most important finding the Foundation has discovered in its history. It is already changing the way researchers recruit for some studies. It will lead to faster diagnosis, more customized and personalized treatment, faster, cheaper, more targeted pharmaceuticals, and ultimately it is another step closer to stopping Parkinson's in its tracks.

Important Links

The Lancet Neurology Article

The Michael J. Fox Foundation Coverage of the Biomarker

PPMI: The Study That's Changing Everything

STAT Article featuring Michael J. Fox's reaction

Michael J. Fox Op-Ed for STAT

The Presenting Partner is Parkinson Canada... where people with Parkinson’s are at the centre of everything they do. Parkinson Canada funds critical research, provides information and support, increases awareness and advocates for improved healthcare outcomes for people with Parkinson's across Canada. Learn more at Parkinson.ca

Thank you to our promotional partners

Spotlight YOPD

PD Avengers

World Parkinson Congress 2023 in Barcelona

Trichloroethylene (TCE). You cannot see it or smell it. It could be in the air you breath, the water you drink, and the food you eat. It is a carcinogen and is linked to clusters of cancer and Parkinson’s. In Journal of Parkinson’s Disease, Dr. Ray Dorsey at the University of Rochester and eleven colleagues have published a research article asking the question “Is Trichlorethylene an invisible cause of Parkinson’s?” The authors go on to make a convincing case.

Dr. Dorsey joins the podcast to explain the dangers of TCE, how it seeps into ground water, your home, schools, and office buildings, how to protect yourself, and where you can look to see if a TCE Superfund site is near where you live. 

KEY LINKS

BOOK: ENDING PARKINSON’S DISEASE; A PRESCRIPTION FOR ACTION

JOURNAL OF PARKINSON’S DISEASE (SCIENTIFIC JOURNAL) 

Trichloroethylene: An Invisible Cause of Parkinson’s Disease?

THE GUARDIAN (UK)

Rates of Parkinson’s disease are exploding. A common chemical may be to blame (TCE)

Secret files suggest chemical giant feared weedkiller’s link to Parkinson’s disease (Paraquat)

NEW YORK NEWSDAY (NY/USA)

A NEWSDAY INVESTIGATION: The Grumman Plume; Decades of Deceit

CBS MORNING (USA)

Service members and families affected by toxic water at Camp Lejeune Marine base still seeking justice decades later

LOS ANGELES TIMES (CA/USA)

Is a common industrial chemical fueling the spread of Parkinson’s disease?

THE TORONTO STAR (ON/CAN)

Dry cleaning chemical linked to Parkinson’s in international study (2011/Canada)

DAYTON DAILY NEWS (OH/USA)

VOICES: How toxic industrial spills have contaminated our groundwater

EPA FACT SHEET | TRICHLOROETHYLENE EPA SUPERFUND HOME PAGE  WIKIPEDIA

CANADIAN sct.gc.ca/fcsi-rscf/home-accueil-eng.aspx">FEDERAL CONTAMINATED SITES INVENTORY (FCSI) sites.html">CONTAMINATED SITES HOMEPAGE

Much gratitude for your content

A Civil Action: Touchstone Pictures, Paramount Pictures, and Wildwood Enterprises, Inc 

SaferChemicals on YouTube WATCH “TOXIC CHEMICAL LOBBY: EXCLUSIVE LEAKED FOOTAGE”

EMAIL Larry and Rebecca: ParkinsonsPod@curiouscast.ca

Have questions, comments, or a story idea? 

We would love you to click here and leave a message https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Follow us, Larry & Rebecca Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Thanks to Curiouscast

Dila Velazquez – Story Producer

Greg Schott – Sound Design

Our Presenting Partner is Parkinson Canada. Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada.

Thanks also to our content and promotional partners 

The Michael J. Fox Foundation’s landmark study Parkinson's Progression Markers Initiative (PPMI)  

PD Avengers – We are building a global alliance to end Parkinson’s. Join us. 

World Parkinson Congress 2023 – It’s time to make your congress and hotel registrations. Details on the website. 

Spotlight YOPD – One of the only Parkinson’s organizations dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust. 

Lithium is more than a drug, it’s the third element on the Periodic Table of Elements. Symbol is LI. It’s lightest metal known to mankind. Lithium-ion batters are used in electric cars. Lithium is also present in vaping devices, many personal electronics such as cell phones, tablets, and laptops, E-Bikes, electric toothbrushes, tools, hoverboards, scooters, and for solar power backup storage. Its origins can be traced back to the Big Bang. 

For 70 years it’s successfully been used to treat bi-polar disease. Now there’s hope it could be game changing for Parkinson’s disease. Tom Guttuso Jr., MD is a professor of Neurology at the University of Buffalo and Co Director of the Movement Disorder. His new book, titled the Promise of Lithium: How an Over-The-Counter Supplement May Prevent and Slow Alzheimer’s and Parkinson’s disease.” Dr. Guttuso joins the pod to discuss the potential of Lithium and stopping Parkinson’s. 

Much Gratitude for your music:

Nirvana Lithium

Evanescence Lithium

Pink We’ve Got Scurvy from the album Sponge Bob’s Greatest Hits

The Steve Miller Band Fly Like an Eagle

EMAIL Larry and Rebecca: ParkinsonsPod@curiouscast.ca

Have questions, comments, or a story idea? 

We would love you to click here and leave a message https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Follow us, Larry & Rebecca Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

KEY LINKS 

BOOK: The Promise of Lithium: How an Over-the-Counter Supplement May Prevent and Slow Alzheimer’s and Parkinson’s disease

Thanks to Curiouscast

Dila Velazquez – Story Producer

Our Presenting Partner is Parkinson Canada. Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada.

Thanks also to our content and promotional partners 

The Michael J. Fox Foundation’s Parkinson’s IQ + You Events

PD Avengers – We are building a global alliance to end Parkinson’s. Join us. 

World Parkinson Congress 2023 – It’s time to make your congress and hotel registrations. Details on the website. 

Spotlight YOPD – One of the only Parkinson’s organizations dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust. 

January 17 marks the 81st anniversary of the birth of one of the greatest Parkinson’s advocates of all time, Muhammad Ali. In this episode, we learn more about the champ’s journey from his eldest daughter Maryum “May May” Ali – the stigma her father dealt with after his diagnosis, when she first noticed changes in her dad, struggles with speaking and medication, and how he improved his quality of life. 

In addition to exploring Ali’s Parkinson’s legacy, Dr. Michael S. Okun, the head of neurology for the University of Florida Norman Fixel Institute for Neurological Diseases, sheds light on Ali’s PD diagnosis. Okun and two other neurologists, the final three neurologists to treat Ali over the course of many years, published an article in October 2022 to clear up misinformation about his diagnosis. Ali was a young onset Parkinson’s disease patient that responds to Levodopa which is different if his Parkinson’s onset due to his boxing career and punches to the head.  

EMAIL Larry and Rebecca: ParkinsonsPod@curiouscast.ca

Have questions, comments, or a story idea? 

We would love you to click here and leave a message https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Follow us, Larry & Rebecca Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

KEY LINKS 

Maryum “May May” Ali - website

RESOURCES

Muhammad Ali and Young-Onset Idiopathic Parkinson Disease—The Missing Evidence

Thanks to Curiouscast

Dila Velazquez – Story Producer

Our Presenting Partner is Parkinson Canada. Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada.

Thanks also to our content and promotional partners 

The Michael J. Fox Foundation’s Parkinson’s IQ + You Events

PD Avengers – We are building a global alliance to end Parkinson’s. Join us. 

World Parkinson Congress 2023 – It’s time to make your congress and hotel registrations. Details on the website. 

Spotlight YOPD – One of the only Parkinson’s organizations dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust. 

One of the dark symptoms of Parkinson’s is apathy. Describing apathy is a bit like describing what it feels like when a dementor in the Harry Potter books kisses a character – the ability to drain happiness and hope from its victims. When a person with Parkinson’s spirals into a an apathetic state they lack motivation and lose interest in activities they used to enjoy. To experience apathy is like being in a bubble of indifference. You stop caring about yourself or other people in your life with a total void of emotion.

In this episode we hear firsthand from Jeff and Kristin Krantz what it’s like as a person with Parkinson’s living in a apathetic state and how it impacts the care partner and others in the family. Dr. Bradley McDaniel offers advice on how to escape apathy through pursuit of your meaning in life. 

EMAIL Larry and Rebecca: ParkinsonsPod@curiouscast.ca

Have questions, comments, or a story idea? 

We would love you to click here and leave a message https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Follow us, Larry & Rebecca Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

KEY LINKS 

Dr. Bradley McDaniels https://hps.unt.edu/bradley-mcdaniels-phd-crc 

Resources Mentioned

Ending Parkinson’s Disease book by Ray Dorsey MD, Michael Okun MD, Todd Sherer PhD and Bas Bloem MD, PhD

Man's Search for Meaning by Victor Frankl

The Spirituality of Imperfection Storytelling and the Search for Meaning by Ernest Kurtz and Katherine Ketchum 

Jeff & Kristen Krantz

Thanks to Curiouscast

Dila Velazquez – Story Producer

Our Presenting Partner is Parkinson Canada. Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada.

Thanks also to our content and promotional partners 

The Michael J. Fox Foundation’s Parkinson’s IQ + You Events

PD Avengers – We are building a global alliance to end Parkinson’s. Join us. 

World Parkinson Congress 2023 – It’s time to make your congress and hotel registrations. Details on the website. 

Spotlight YOPD – One of the only Parkinson’s organizations dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust. 

When John O’Leary was a nine-year-old boy, he was burned on 100% of his body. He was in his garage playing with matches and gasoline—just like he’d had seen the older boys on his block do. A fire exploded, consuming the garage, sending him flying back against the wall and turning his whole world upside down. He talks with Larry & Rebecca about how he was given 1% chance to live. Now, 36-years later, John is living an inspired life. He has two national best-selling books “On Fire” and “In Awe.” he’s a podcast host, an in-demand international speaker and is someone who intimately understands the impact that Parkinson’s can have on a family.

Email Larry and Rebecca: ParkinsonsPod@curiouscast.ca

Have questions, comments, or a story idea?

We would love you to click here and leave a message  https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Follow us, Larry & Rebecca Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

KEY LINKS

John O’Leary Website www.JohnOLearyInspires.com

Live Inspired Podcast https://johnolearyinspires.com/podcast/

·        Episode featuring Larry & Rebecca Gifford and When Life Gives You Parkinson’s

Books

·        On Fire: The 7 Choices to Ignite a Radically Inspired Life

·        In Awe: Rediscover our childlike wonder + unleash inspiration, meaning and joy.

Facebook @JohnOLearyRisingAbove

Instagram @joholeary.inspires

Linked In @John-O-Leary-08b2805

Twitter @JOLearyInspires

Thanks to Curiouscast

Dila Velazquez – Story Producer

Greg Schott – Sound Design

Our Presenting Partner is Parkinson Canada. Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada.

Thanks also to our content and promotional partners

The Michael J. Fox Foundation’s Parkinson’s IQ + You Events

PD Avengers – We are building a global alliance to end Parkinson’s. Join us.

World Parkinson Congress 2023 – It’s time to make your congress and hotel registrations. Details on the website. 

Spotlight YOPD – One of the only Parkinson’s organizations dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.  

Kat Hill and Nancy Peate are the authors of Being Well with a Chronic Illness: A Guide to Joy and Resilience with Your Diagnosis. In their book they offer wisdom, language, research-supported guidance and personal stories to help people with Parkinson’s and other chronic conditions navigate their wellness journey. In this episode, Rebecca talks with the authors — who also happen to be good friends — about their own experiences with Parkinson’s and how they have cultivated tools to find joy and resilience. Larry and Rebecca also discuss and offer their reactions to the book.

EMAIL Larry and Rebecca: ParkinsonsPod@curiouscast.ca

Have questions, comments, or a story idea? We would love you to click here and leave a message https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Follow us, Larry & Rebecca Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

KEY LINKS 

Being Well with Chronic Illness: A Guide to Joy & Resilience with Your Diagnosis

by Kat Kill and Nancy Peate (Paperback and e-Book)

Penguin Random House United States US$18.00 Canada C$23.00 Australia A$32.99

WHSmith (UK) United Kingdom £15.63

PD Lemonade – Kat Hill’s podcast

VIDEO: Advocacy Pyramid ARTICLE: Tom Isaac’s Advocacy Pyramid explained from Grand Challenges 2014

Women’s Parkinson’s Project

Thanks to 

Dila Velazquez – Story Producer

Greg Schott – Sound Design

Our Presenting Partner is Parkinson Canada. Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada.

Thanks also to our content and promotional partners 

The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford 

PD Avengers – We are building a global alliance to end Parkinson’s. Join us. 

World Parkinson Congress 2023 – It’s time to make your congress and hotel registrations. Details on the website. 

Spotlight YOPD – One of the only Parkinson’s organizations dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust. 

Geoff Constable is a PD Avenger and an Ambassador for the World Parkinson Congress 2023 in Barcelona. We met at the last WPC2019 in Kyoto. Like many of us with YOPD, Geoff’s diagnosis was delayed six years as doctors tried to figure out root issue of his symptoms. In 2008, at the age of 50, he finally was able to put a name to the issues he had, Parkinson’s disease.

Geoff spent his teen years sleeping on friends couches and sometimes living on the street. He earned a degree in Naval Architecture and designed 16 Ships for the Royal Australian Navy and spent countless hours battle testing the ships in extreme conditions. 

At 44-years old he talked to his doctor about onsetting symptoms. It took six years to diagnose him with Young Onset Parkinson’s. He was happy to have a name for it, but bummed because there was no cause, no cure, and no standard disease path. 

Listen to how Geoff took his diagnosis of Parkinson’s and discovered his own superpowers on how to incorporate and accept it. Using his own body as vessel, he put himself through battle testing and discovered he was capable of far more than he or his doctors believed possible. 

EMAIL Larry and Rebecca: ParkinsonsPod@curiouscast.ca

Have questions, comments, or a story idea? We would love you to click here and leave a message https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Follow us, Larry & Rebecca Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

KEY LINKS 

WPC2023 Registration and Hotel

Geoff Constable’s blog

VIDEO: Geoff Constable’s 2022 Moomba performance

Thanks to 

Dila Velazquez – Story Producer

Greg Schott – Sound Design

Our Promotional Partners include: 

Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada.

Thanks also to our content and promotional partners 

The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford as featured in the MJFF2021 Year in Review. 

PD Avengers – We are building a global alliance to end Parkinson’s. Join us. 

World Parkinson Congress 2023 – It’s time to make your congress and hotel registrations. Details on the website. 

Spotlight YOPD – One of the only Parkinson’s organizations dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust. 

Updates on several stories we’ve shared on the podcast. Reactions to the three-minute test to diagnose Parkinson’s. The final 30km on a cross-country bike tour for Parkinson’s leaves bikers spinning their wheels. * We catch up with the Rigid Riders. Plus, Ozzy Osbourne on stage for the first time since his Parkinson’s diagnosis. *Don’t forget to push the donut button. 

EMAIL Larry and Rebecca: ParkinsonsPod@curiouscast.ca

Have questions, comments, or a story idea? We would love you to click here and leave a message https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Follow us, Larry & Rebecca Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

KEY LINKS 

Spinning Wheels - www.spinningwheelstour.ca 

Spinning Wheels – YouTube: https://www.youtube.com/channel/UCR1_sRarZ_nt6neUqAXNMPw 

Thanks to 

Dila Velazquez – Story Producer

Greg Schott – Sound Design

University of Manchester

Jim Redmond

Steve Iseman

Mike Loghrin

Darlene Richards-Loghrin

BBC Sport

“The Talk” on Talk TV Network

And YOU!

Our Promotional Partners include: 

Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada.

Thanks also to our content and promotional partners 

The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford as featured in the MJFF2021 Year in Review. 

PD Avengers – We are building a global alliance to end Parkinson’s. Join us. 

World Parkinson Congress 2023 – It’s time to start thinking about making your plans to join us for #WPC2023 in Barcelona, Spain for the sixth triennial congress. 

Spotlight YOPD – One of the only Parkinson’s organizations dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust. 

This is a breakthrough, breaking news episode featuring Professor Perdita Barran, University of Manchester and Joy Milne, the woman who can smell Parkinson’s. Today. their latest research paper was published at 12:01am (BST) September 7, 2022. This research has led to a three-minute non-invasive test to determine a positive or negative Parkinson’s diagnosis. Clinical Research will begin within two years at University of Manchester and has the potential to be approved as a diagnostic tool for neurologists before the end of the decade.

LISTEN TO JOY MILNE in previous episodes

June 05, 2019                The Woman Who Can Smell Parkinson’s | World Parkinson Congress | Kyoto

October 20, 2019           The Smell of Parkinson’s

EMAIL Larry and Rebecca: ParkinsonsPod@curiouscast.ca

Have questions, comments, or a story idea? We would love you to click here and leave a message  https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Follow us, Larry & Rebecca Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Thanks to

Dila Velazquez – Story Producer

Greg Schott – Sound Design

Our Promotional Partners include: 

Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada.

Thanks also to our content and promotional partners

The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford as featured in the MJFF2021 Year in Review.

PD Avengers – We are building a global alliance to end Parkinson’s. Join us.

World Parkinson Congress 2023 – It’s time to start thinking about making your plans to join us for #WPC2023 in Barcelona, Spain for the sixth triennial congress.

Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.  

Dave Iverson was diagnosed with Parkinson’s in 2004. He is a founding member of The Michael J Fox Foundation (MJFF) Patient Council and was the first host of the MJFF Parkinson’s Podcast. We caught up at a patient council meeting in New York City to chat about his new book “Winter Stars.” 

Parkinson’s runs deep in Dave’s family, but this book is not strictly about Parkinson’s. It’s about family, life choices and a bone between a mother and son. 

At the age of 59, having spent nearly forty years in public broadcasting, Dave paused his career. His 95-year old mother had a rough bout with pneumonia and couldn’t care for herself anymore. So, he paused his career, moved in with her and became her caregiving. 

 That decision resulted in a decade of self-discovery, an odyssey that forced Dave to come face to face with his personal weaknesses and uncharacteristic anger, while strengthening the bond to his mother and learning to live with, learn from and love dementia. 

Winter Stars by Dave Iverson is available wherever you buy your books. 

EMAIL Larry and Rebecca: ParkinsonsPod@curiouscast.ca

Have questions, comments, or a story idea? We would love you to click here and leave a message https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Follow us, Larry & Rebecca Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

KEY LINKS 

“Winter Stars” by Dave Iverson – Sample Chapters, Listen to an Excerpt, Read Reviews, and Purchase 

My Father, My Brother and Me – Watch Dave Iverson’s FRONTLINE documentary online. 

Capturing Grace – Homepage for Dave Iverson’s film about Parkinson’s and Dance.

Care Partner Resources

PARKINSON CANADA

Care Partnering Home Page – Access the free care partner book, self-assessment guide, care partner burden calculator, home safety evaluation, activities of daily living, daily needs and routine tracker, Parkinson’s disease daily diary, and a “What-if” planning tool. 

MICHAEL J FOX FOUNDATION 

Care Partner Guide – “You, Your Loved One and Parkinson’s Disease” FREE DOWNLOAD from The Michael J Fox Foundation 

Caregiving and Parkinson’s “Ask the MD” – The Michael J Fox Foundation’s Dr. Rachel Dolhun offers insight and advice to Care Partners in this four-minute video. 

PARKINSON’S FOUNDATION

Care Partner Resources – Early in the Journey to Advanced Parkinson’s, getting outside help, Hotlines, government agency contacts, medication and financial assistance, and end of life planning. 

AMERICAN PARKINSON’S DISEASE ASSOCIATION (APDA)

Care Partner Resources

PARKINSON’S UK

Care Partner Resources 

European Parkinson’s Disease Association (EPDA)

Caring and Parkinson’s Resource Page

WRITING WORKSHOP

Tightrope Theatre - Rebecca Gifford’s online virtual writing workshop “Express Yourself” is open to everyone from anywhere. The six-week course begins in September 2022 and is open for registration through Tightrope Theatre. 

Thanks to 

Dila Velazquez – Story Producer

Greg Schott – Sound Design

Our Promotional Partners include: 

Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada.

Thanks also to our content and promotional partners 

The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford as featured in the MJFF2021 Year in Review. 

PD Avengers – We are building a global alliance to end Parkinson’s. Join us. 

World Parkinson Congress 2023 – It’s time to start thinking about making your plans to join us for #WPC2023 in Barcelona, Spain for the sixth triennial congress. 

Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust. 

SUMMARY: In the book, “Mary & Me,” author Robyn Cotton draws upon her own experiences with Parkinson’s in a fictional novel based in contemporary times and early 1800’s London, England when Dr. James Parkinson was roaming the streets and noticing a condition, he called shaky palsy. Not often does Parkinson’s play such a key role in a fictional piece of work, Robyn’s journey grounds the book in near-real experiences as she and her characters struggle with the degenerative brain disease. 

EMAIL Larry and Rebecca: ParkinsonsPod@curiouscast.ca

Have questions, comments, or a story idea? We would love you to click here and leave a message https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Follow us, Larry & Rebecca Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

KEY LINKS 

“Mary & Me” by Robyn Cotton – Buy it on Amazon

The BC Brain Wellness Program

Tightrope Theatre – “Playing with Words” workshops and the more intense “Express Yourself” six-week course with Rebecca Gifford are open for registration. 

Thanks to 

Dila Velazquez – Story Producer

Our Promotional Partners include: 

Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada.

Thanks also to our content and promotional partners 

The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford as featured in the MJFF2021 Year in Review. 

PD Avengers – We are building a global alliance to end Parkinson’s. Join us. 

World Parkinson Congress 2023 – It’s time to start thinking about making your plans to join us for #WPC2023 in Barcelona, Spain for the sixth triennial congress. 

Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust. 

Larry & Rebecca Gifford highlight two Canadians with Parkinson’s who are sparking awareness, raising money and building community by riding their bicycles across every Canadian Province over the next three months. 

Jim Redmond and Steve Iseman take a break from pedaling to sit down with Larry at picnic table outside their RV on Day two of the journey when they stopped at the Capilano River RV Park in West Vancouver. 

Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Follow us, Larry & Rebecca Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Thank you to the following people and organizations featured in this episode:

Jim Redmond  - LISTEN to Jim’s episodes from Season One 

Parkinson’s Doesn’t Have to Be a Career Killer.  

Hope, Fear, Frustration and Levadopa

Steve Iseman   

Mike Loghrin

Darlene Richards-Loghrin

WANDA (The RV)

Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada.

Here is a link to Parkinson Canada’s “Together: No Matter What” campaign

Thanks also to our content and promotional partners

The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford

Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.  

PD Avengers –  We are building a global alliance to end Parkinson’s. Join us.

World Parkinson Congress 2023 –Make plans to join us for #WPC2023 in Barcelona, Spain.

Credits

Dila Velazquez – Story Producer

Greg Schott – Sound Design

This is part one of three of a mini-series of episodes we are calling “Down Under.” Host Larry Gifford gets you ready for World Parkinson’s Day. Learn about the new international symbol for Parkinson’s disease named “THE SPARK” and how you can use it.  Where to watch the world premiere of the new documentary “The Long Road to Hope: Ending Parkinson’s Disease.” The Parkinson Unity Walk in Central Park in New York City is going to take place April 23. IF you can’t make it, you can still participate, we’ll tell you how.  

The featured guest is Founder of PD Warrior and the Insight into Parkinson’s virtual conference Melissa McConaghy, FACP. Melissa takes us behind the curtains of PD Warrior and gets us ready for Insight into Parkinson’s Conference.

We discuss stigma, self care, and neuro plasticity.

Thank you for listening.

EMAIL US: ParkinsonsPod@CuriousCast.ca  

Have questions for Larry & Rebecca?  Want to share how your conversations go with your partner? We would love you to click and call us here.   https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Follow us, Larry & Rebecca Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

KEY LINKS FOR THIS EPISODE

Documentary: The Long Road to Hope | Ending Parkinson’s Disease

The Spark     www.WorldParkinsonsDay.com

PD Warrior   www.PDWarrior.com

Insight into Parkinson’s www.PDWarrior.com/insight-into-PD

Unity Walk – www.unitywalk.com

Mediflix – www.mediflix.com

Thanks to

Dila Velazquez – Story Producer

Greg Schott – Sound Design

Our Promotional Partners include:  

Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada.

Thanks also to our content and promotional partners

The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford as featured in the MJFF2021 Year in Review.

PD Avengers –  We are building a global alliance to end Parkinson’s. Join us.

World Parkinson Congress 2023 – It’s time to start thinking about making your plans to join us for #WPC2023 in Barcelona, Spain for the sixth triennial congress.

Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.  

This is the final instalment of our three episode mini-series we are calling “The Talk.” Hosts Larry and Rebecca Gifford talk about how Parkinson’s can send them into a hopeless spiral – at times it feeling as if they aren’t both committed to the marriage. And then there are times when Parkinson’s brings them closer together than ever.  

A difficult, intimate, deeply personal conversation about keeping connected and the importance of communication for people with Parkinson’s and care partners. 

This episode is dedicated to our dog Nina. We mention her a couple times in here. After this recording, her health turned and she’s no longer of this earth, but is someone where she can run free, where bully sticks are unlimited and she is free of pain. 

Thank you for listening. 

EMAIL US: ParkinsonsPod@CuriousCast.ca  

Have questions for Larry & Rebecca?  Want to share how your conversations go with your partner? We would love you to click and call us here.   https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Follow us, Larry & Rebecca Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Thanks to 

Dila Velazquez – Story Producer

Greg Schott – Sound Design

Our Promotional Partners include:  

Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada.

Thanks also to our content and promotional partners 

The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford. The latest podcast, released on February 16th, 2022 features Larry & Rebecca and Kat & Ken Hill about intimacy and Parkinson’s. Happy Valentine’s Day.

PD Avengers –  We are building a global alliance to end Parkinson’s. Sign up today and check out the events calendar at www.PDAvengers.com 

World Parkinson Congress 2023 – It’s time to start thinking about making your plans to join us for #WPC2023 in Barcelona, Spain for July 2023… It’ll be here before you know it.  

Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.  

This is part two of three for a mini-series of episodes we are calling “The Talk.” Hosts Larry and Rebecca Gifford are also the guests this week. In this episode, they check share the emotional toll Parkinson’s takes on each of them.

How to maintain agency of your life while dealing with Parkinson’s, how apathy impacts everything and where hope is found when you feel hopeless.

Thank you for listening. 

EMAIL US: ParkinsonsPod@CuriousCast.ca 

Have questions for Larry & Rebecca? Want to share how your conversations go with your partner? We would love you to click and call us here. https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Follow us, Larry & Rebecca Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Thanks to 

Dila Velazquez – Story Producer

Greg Schott – Sound Design

Our Promotional Partners include: 

Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada.

Thanks also to our content and promotional partners 

The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford as featured in the MJFF2021 Year in Review. Also noted in the 34 page booklet was…

PD Avengers – We are building a global alliance to end Parkinson’s. The next Assemble meeting is Tuesday, Jan 25th at 11a PT. Join us. Details under “meetings” at PD Avengers dot com. 

World Parkinson Congress 2023 – It’s time to start thinking about making your plans to join us for #WPC2023 in Barcelona, Spain for t he sixth triennial congress. 

Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust. 

This is part one of three for a mini-series of episodes we are calling “The Talk.” Hosts Larry and Rebecca Gifford are also the guests this week. They will check on how each other is doing physically and emotionally. 

They will talk about personal priorities, advocacy, and how chronic disease changes and challenges the dynamics of a family. We will also get into what gives us hope. In part one, that you are about to hear – we are talking about where our life sits from a practical perspective, the joys and pressures. 

Also, what we are discovering about what we need as people and a family to maintain balance and productivity in our relatively new life where Parkinson’s is a main character.

We are figuring out how to take true breaks, a concept and practice that changes its meaning constantly and looks different as Parkinson’s progresses. And we’re relearning how energy conservation and awareness affects our wellbeing and ability to be present and as healthy as possible. 

Thank you for listening. 

EMAIL US: ParkinsonsPod@CuriousCast.ca  

Have questions for Larry & Rebecca?  Want to share how your conversations go with your partner? We would love you to click and call us here.   https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Follow us, Larry & Rebecca Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Thanks to 

Dila Velazquez – Story Producer

Greg Schott – Sound Design

This episode is dedicated in memory of my friend and fellow improve performer Sukhi. Thanks for the laughs pal. Godspeed.

Our Promotional Partners include:  

Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada.

Thanks also to our content and promotional partners 

The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford as featured in the MJFF2021 Year in Review. Also noted in the 34 page booklet was…

PD Avengers –  We are building a global alliance to end Parkinson’s. The next Assemble meeting is Tuesday, Jan 25th at 11a PT. Join us. Details under “meetings” at PD Avengers dot com. 

World Parkinson Congress 2023 – It’s time to start thinking about making your plans to join us for #WPC2023 in Barcelona, Spain for t he sixth triennial congress. 

Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.  

Larry & Rebecca Gifford dive deep in to deep brain stimulation (DBS). We learn about the innovative technology used for DBS from Dr. Alfonso Fasano, the chair of Neuromodulation and multi-disciplinary care at the University of Toronto and University Health Network.

Sonia Soriano-Espert from Valencia, Spain, through translator and friend Sabela Avion, shares her experience of having DBS surgery conducted by a robot. This interview first aired on ODNA PK radio in Spain. The hosts are PD Avengers and members of Con P de Parkinson, a growing group of women who speak Spanish and have PD.

In part-one of this two-part arc, Heather Kennedy and Becca Miller were preparing for DBS Surgery. In part two, both women share their surgery experience. The share how their children responded and how they feel about DBS, now that they have had it. 

Thank you for listening. 

Send us songs you would want to listen to while undergoing DBS.  

EMAIL US: ParkinsonsPod@CuriousCast.ca 

Or add the songs you’d want to listen to during DBS to the WLGYP DBS PLAYLIST on Spotify

Have questions for Larry & Rebecca? Do you want to share your DBS story or have an idea for an upcoming podcast? Want to share how the podcast has helped you? Click the link on your laptop or desktop and leave us a voice message. https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Follow us, Larry & Rebecca Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Thank you to the following people and organizations featured in this episode:

Alfonso Fasano, MD, PhD, Chair in Neuromodulation and Multi-Disciplinary Care, Neurologist, Co-Director of the Surgical Program, Movement Disorders Centre, Toronto Western Hospital.  

Heather Kennedy, PwP, WPC2023 Ambassador a.k.a. Kathleen Kiddo

Becca Miller, PhD, PwP, Michael J. Fox Foundation Patient Council, Assistant Professor of Psychiatry at Yale University. 

Michael S. Okun, MD University of Florida

Kelly D. Foote, MD University of Florida

Ted X Talk about DBS from Michael Okun, MD and Kelly Foote, MD (2012)

Sonia Soriano-Espert, PwP, Valencia, Spain. Con P de Parkinson

Sabela Avion, PwP, NYC & Spain. Founder of Parkinsonic. Con P de Parkinson

Special music acknowledgements. Thank you to Justin Timberlake. We played 12 seconds of “Cant Stop The Feeling!” Credit goes to the song writers Timberlake, Max Martin, and Johan Schuster. Timberlake and Martin are also credited as producers along with Shellback.  

Thank you to Taylor Swift. We played :17 of “Shake it Off.” The song was written by Swift, Max Martin and Shellback. It was released on Big Machine records in 2014.

A special thanks to Dorothy and Scarecrow. “If I Only Had a Brain,” is heard for 31 seconds. The song is featured in the 1938 film The Wizard of Oz. It is written by Harold Arlen and Yip Harburg. Ray Bolger and Judy Garland sang it when their characters first met along the yellow brick road. The film is still under copyright by Warner Pictures.

Our Promotional Partners include:  

Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada.

Here is a link to Parkinson Canada’s “Together: No Matter What” campaign

Thanks also to our content and promotional partners

The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford

Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.  

PD Avengers –  We are building a global alliance to end Parkinson’s. Join us.

World Parkinson Congress 2023 –Make plans to join us for #WPC2023 in Barcelona, Spain.

Credits

Dila Velazquez – Story Producer

Greg Schott – Sound Design

Larry & Rebecca Gifford dive deep in to deep brain stimulation (DBS). We challenge the Neuroscience perception that the brain is everything we know and do, and everything we are. We believe, more than just a brain that makes us human, empathetic, and real. 

This first part prepares you for the surgery. We call it DBS 101. We will explain terminology detail the lead up to the surgery, and tell you why it matters where the lead wires are placed in your brain. We explore our personal hesitations surrounding DBS. And we revisit friends of the podcast, Heather Kennedy and Becca Miller, both of whom are recovering from recent DBS surgeries. 

Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Follow us, Larry & Rebecca Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Thank you to the following people and organizations featured in this episode:

Heather Kennedy, PwP, WPC2023 Ambassador a.k.a. Kathleen Kiddo

Becca Miller, PhD, PwP, Michael J. Fox Foundation Patient Council, Assistant Professor of Psychiatry at Yale University. 

Michael S. Okun, MD University of Florida

Kelly D. Foote, MD University of Florida

Ted X Talk about DBS from Michael Okun, MD and Kelly Foote, MD (2012)

Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada.

Here is a link to Parkinson Canada’s “Together: No Matter What” campaign

Thanks also to our content and promotional partners

The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford

Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.  

PD Avengers –  We are building a global alliance to end Parkinson’s. Join us.

World Parkinson Congress 2023 –Make plans to join us for #WPC2023 in Barcelona, Spain.

Credits

Dila Velazquez – Story Producer

Greg Schott – Sound Design

The first three episodes of Season 4 of When Life Gives You Parkinson’s go deep inside the brain. It has been five years since the United Nations recognized one BILLION people or one in six person’s alive today on the planet suffers from a neurological disorder, from Alzheimer and Parkinson disease, strokes, multiple sclerosis, and epilepsy to migraine, brain injuries and neuro-infections. Each year, nearly 7 million dying from neurological issues each year. Every two-and-half minutes, another person dies from Parkinson’s disease.

What’s happening to us?

The Brain is Under Siege. In the kickoff episode of Season 4, Howard Weiner MD, a Harvard professor and Co-Director of the Ann Romney Center at Brigham and Women’s hospital shares his theories. Weiner released a book in October 2021 called, “The Brain Under Siege; Solving the Mystery of Brain Disease, and How Scientists are Following the Clues to a Cure.”  He suggests the key to solving this diseases is to treat them like crime scenes. Learn along with Larry as Dr. Weiner details Alpha Synuclean, Microbiome, the Brain Gut Connection, and the importance of volunteering for research. He also explains how many of these brain issues have more in common that we first thought.

Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Follow us, Larry & Rebecca Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Thank you to the following people and organizations featured in this episode:

Dr. Howard Weiner, Harvard professor, Co-Director of The Ann Romney Center at Brigham and Women’s Hospital and author of “The Brain Under Siege.”

Dr. Ray Dorsey, co-author “Ending Parkinson’s Disease.”

Dr. Gregory Petsko – Ted Talk

Dr. Silke Cresswell – Studies role of Gut Biome

Ted Talks

Djavad Mowafaghian Centre for Brain Health

Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada.

Here is a link to Parkinson Canada’s “Together: No Matter What” campaign

Thanks also to our content and promotional partners

The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford

Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.  

PD Avengers –  We are building a global alliance to end Parkinson’s. Join us.

World Parkinson Congress 2023 –Make plans to join us for #WPC2023 in Barcelona, Spain.

Credits

Dila Velazquez – Story Producer

Greg Schott – Sound Design

We missed a few weeks of the podcast and I wanted to explain why. Turns out I can’t still do it all. I’m having to prioritize more and  more on where I put my focus. This time, the podcast got short shrift. But, I figured if anyone would be understanding it’ll be my pod peeps. There are two more episodes of Season 3 of When Life Gives You Parkinson’s which will be released sometime this Summer. One on Paraquat and other toxic chemicals and one on DBS: Deep Brain Stimulation. After those episodes drop, Rebecca and I will be on a hiatus from the podcast until sometime in 2022.

Breaking News. Big Announcement dropped on June 15 that the World Parkinson Congress 2022 in Barcelona is postponed one year to July 4-7. It will still be in Barcelona.

This episode of When Life Gives You Parkinson’s features former NBA star Brian Grant who was diagnosed with Parkinson’s disease (PD) in 2008. He spent 12 years battling for rebounds and putting points on the board playing professional basketball and the last 13 years battling Parkinson’s and putting points on the board as a PD advocate.  

“You know, when I go onto court and go up against somebody who was a big name, I’d grit my teeth to try to be an animal out there,” Grant shared. But he admits, YOPD is a different beast than pro basketball, “You can do that at Parkinson's, but it's just going to sit there and say, keep gritting your teeth and when you get done gritting your teeth…  I'm going to have your cheekbone.”

From denial and depression to acupuncture and advocacy, Brian Grant’s PD story is a unique but relatable journey for many suffering and living with the disease. His honesty and vulnerability are on display as he, like many of us, try to come to terms with a disease determined to do whatever it pleases, whenever it wants to. 

You can find out more about the Brian Grant Foundation at BrianGrant.org. His book Rebound: Soaring in the NBA, Battling Parkinson’s, and Finding What Really Matters is available everywhere you buy books…

Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Follow us, Larry & Rebecca Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Thank you to the following people featured in this episode:

 Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada.

Here is a link to Parkinson Canada’s “Together: No Matter What” campaign

Thanks also to our content and promotional partners

The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford

Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.  

PD Avengers - United to end Parkinson’s. Join us.

World Parkinson Congress 2022 –Make plans to join us for #WPC2022 in Barcelona, Spain.

This episode of When Life Gives You Parkinson’s is all about care partners and caregivers advocating for themselves. We take our jobs very seriously and often put caring for ourselves last on our lists. Our lives and well-beings are affected on nearly every level by our Person with Parkinson’s condition, and we have our own needs, yet we still are often considered predominantly in relationship to them. How do we as care partners, caregivers and Partners in Parkinson’s advocate for equal consideration in and out of our relationships? How do we make sure we have what we need to take care of ourselves, not to mention the time and space to do it? How do we learn to consistently consider our own well-being first?

Rebecca takes the lead this episode and talks to three wise and wonderful care partners. First, she speaks frankly about the challenges and lessons that Cherryl Choi and Sheryl Hague have learned as they navigate their life as care partners, mothers and humans. Then she speaks to Leslie Davidson, an award-winning writer and Person with Parkinson’s who also was a care partner and caregiver to her late husband Lincoln, who had Lewy Body Dementia. She tells us what she’s learned by being on both sides of the experience and the role her writing plays in her own advocacy. And, of course, Rebecca and Larry talk about how they move through these waters in their relationship.

U-Turn Parkinson’s is Sheryl and Tim Hague’s wellness center in Winnipeg.

Find out more about all that Cherryl and Jimmy Choi do at a TheFoxNinja.com.

Writer Leslie Davidson’s website.

Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Follow us, Larry & Rebecca Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Thank you to the following people featured in this episode:

Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada.

Here is a link to Parkinson Canada’s “Together: No Matter What” campaign

Thanks also to our content and promotional partners

The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford

Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.  

PD Avengers - United to end Parkinson’s. Join us.

World Parkinson Congress 2022 –Make plans to join us for #WPC2022 in Barcelona, Spain.

April is Parkinson’s Awareness Month! This episode of When Life Gives You Parkinson’s addresses stigma of Parkinson is in Uganda. You will meet Hannington Kabugo and learn how the passion and resourcefulness of a single advocate can help drive change in the world. Hannington and his two sisters moved with their father out of their home after the village determined his Mom was a witch. They were never to return. He tells us the stories of what happened when he sneaked back to see her. Years later, Hannington realized she was exhibiting all the signs of Parkinson’s. He has established Parkinson’s Si Buko, which means Parkinson’s is not witchcraft or a curse.

DONATIONS for Hannington and Parkinson's Si Buko can be handled two ways. 

1.Donations go directly into a PayPal account owned by Sherryl Klingelhofer, President of Parkinson's Si Buko

2  "Uganda: Pills for Patients with Parkinson's, which will go direct to Hannington 

Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Follow us, Larry & Rebecca Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Thank you to the following people featured in this episode:

Kabugo Hannington – is the Director of Operations of Parkinson’s Si Buko Uganda

Gavin Mogan – is a PwP, living in Texas, and is Executive Director of Parkinson’s Si Buko Uganda

 Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada.

Here is a link to Parkinson Canada’s “Together: No Matter What” campaign

Thanks also to our content and promotional partners

The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford

Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.  

PD Avengers - United to end Parkinson’s. Join us.

World Parkinson Congress 2022 –Make plans to join us for #WPC2022 in Barcelona, Spain.

April is Parkinson’s Awareness Month! This episode of When Life Gives You Parkinson’s Larry interviews Allan Cole from the PD Wise blog and the author of a new book Counseling Persons with Parkinson’s Disease. Allan, 53, received his diagnosis nearly five years ago. In addition to his advocacy work, he is a father of two teenaged girls, he is coming up on his 30th wedding anniversary and he is a professor and academic dean in Steve Hicks School of Social Work at the University of Texas at Austin.

Halfway through this episode, the host becomes the guest as Allan interviews Larry. The discussions wind their way through work life with PD, family, advocacy, leadership and what gives them hope.

Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Follow us, Larry & Rebecca Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Thank you to the following people featured in this episode:

Allan Hugh Cole Blog: PD Wise, Book: Counseling Persons with Parkinson’s Disease Follow Allan on Twitter: @PDWise

Allan mentioned an episode of When Life Gives You Parkinson’s when I spoke with colleagues. Here’s a link to “Parkinson’s doesn’t have to be a career killer.”

Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada.

Here is a link to Parkinson Canada’s “Together: No Matter What” campaign

Thanks also to our content and promotional partners

The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford

Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust. 

PD Avengers - United to end Parkinson’s. Join us.

World Parkinson Congress 2022 –Make plans to join us for #WPC2022 in Barcelona, Spain.

April is Parkinson’s Awareness Month! This episode of When Life Gives You Parkinson’s is about women with Parkinson’s who are diagnosed less often, less accurately and offered treatments that are less effective often because hormonal cycles play a role and it’s a rather unexplored area of the disease.

We will hear from three women with Parkinson’s who also experienced pregnancy, giving birth and parenting with PD. All of their experiences were different, but certainly complicated by their Parkinson’s disease. And all three are now advocates for women like them.

Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Follow us, Larry & Rebecca Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Thank you to the following people featured in this episode:

Soania Mathur, MD - Sonia was a family physician and pregnant with her first child when she was diagnosed at 27. She is co-founder of PD Avengers, co-chair of The Michael J Fox Patient Council,  on the Board of Directors for the Davis Phinney Foundation, and the medical boards of the Brian Grant Foundation and Parkinson Canada. She and her two daughters have also written two Children’s books on Parkinson’s; My Grandpa’s Shaky Hand and Shaky Hands – A Kids Guide to Parkinson’s Disease.

Caitlin Nagy – After denying and hiding her diagnosis for seven years, Caitlin, a 38-year-old mother, is sharing her story of Parkinson’s in Parkinson Canada’s April Awareness Campaign “Together: No Matter What.”

Paola Celli - Paola was born in Ecuador and diagnosed at the age of 12. She was married and then moved to Texas where she gave birth to two children.

Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada.

Here is a link to Parkinson Canada’s “Together: No Matter What” campaign

Thanks also to our content and promotional partners

The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford

Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust. 

PD Avengers - United to end Parkinson’s. Join us.

World Parkinson Congress 2022 –Make plans to join us for #WPC2022 in Barcelona, Spain.

Credits

Dila Velazquez – Story Producer

Rob Johnson  – Sound Design

In this episode of When Life Gives You Parkinson’s, I am the host of a live event with four leading experts in the Parkinson’s world. Together they wrote a book called “Ending Parkinson’s Disease” and launched a red letter campaign to the White House. It’s been one year since the book was released and it has helped to inspired the movement PD Avengers, which I co-founded. What’s new in Parkinson’s? What have they learned? What’s standing in our way of success? Listen as Dr. Ray Dorsey, Dr. Bas Bloem, Dr. Michael Okun, and Dr. Todd Sherer sit down for one on one interviews with me and learn how, no matter where you are in the world, you can help make a difference.

Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Follow us, Larry & Rebecca Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Thank you to the following people featured in this episode:

Dr. Todd Sherer, CEO Michael J Fox Foundation

Dr. Michael Okun, Chair and professor of Neurology, University of Florida

Dr. Bas Bloem, Prof. Bas Bloem is the medical director of the Department of Neurology at Radboud University Medical Center.

Dr. Ray Dorsey, Prof. Department of Neurology , Director of Center for Health and Technology (SMD)     at the University of Rochester

Buy the Ending Parkinson’s Book or Join the Red Letter Campaign www.endingpd.org

Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada.

Here is a link to the Parkinson’s Canada Preventing Falls Guide.

Thanks also to our content and promotional partners

The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford

Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust. 

PD Avengers - United to end Parkinson’s. Join us.

World Parkinson Congress 2022 –Make plans to join us for #WPC2022 in Barcelona, Spain.

Credits

Dila Velazquez – Story Producer

Greg Schott – Sound Design

This episode of When Life Gives You Parkinson’s is about exploring Eastern holistic healing modalities as a complement to the pharmaceuticals relied upon by Western Medicine. Parkinson’s touches a global community, so we might as well use all the global tools to address our health and wellness. Sometimes it is a matter of having the courage to try something new.

For me, last year, that was acupuncture. I am afraid of needles, but quite enjoyed the pain relief it provide and calming, centering sensation it provided. Practitioners of traditional Eastern medicine stress the importance of finding an energetic balance and energetic awareness.

I have never had Reiki. Rebecca experienced it at World Parkinson Congress in Kyoto. We talk to the two Reiki masters who were in the “renewal room” and the impact that they observed Reiki had on people with Parkinson’s and care partners. We also chat with Karl and Angela Robb. Karl has had PD for thirty years. After discovering the benefits of Reiki, they both became Reiki masters and use it to manage life’s challenges.

Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Follow us, Larry & Rebecca Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Thank you to the following people featured in this episode:

Muniqui Muhammad and Lena Takahashi www.healinglandreiki.com

Karl and Angela Robb www.KarlRobb.com and check out their book A Soft Voice in a Noisy World: A Guide to Dealing and Healing with Parkinson’s Disease Book

Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada.

Here is a link to the Parkinson’s Canada Preventing Falls Guide.

 Thanks also to our content and promotional partners

The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford

Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust. 

PD Avengers - United to end Parkinson’s. Join us.

World Parkinson Congress 2022 –Make plans to join us for #WPC2022 in Barcelona, Spain.

Hi, it’s Larry. I’m 49 and I have Parkinson’s disease. This episode of When Life Gives You Parkinson’s is about managing falls. It is winter and where we live snow and ice and black ice and freezing rain are all hazards, which increase everyone’s chances of falling. People with Parkinson’s are more prone to slipping and stumbling, skidding and tumbling to the ground. So, we should talk about it. I didn’t consider it a topic I’d need to know much about until I get much older. I was wrong. One reason we're doing this episode is because over the holidays I had four falls.  

I am on the mend with help from NeuroFit BC’s Naomi Casiro. Rebecca and I talk with Physiotherapist Nicole Ascera, PhD. She’s a clinical specialist in neurosciences and wrote the Parkinson Canada Guide on Preventing Falls. I also meet the creator of the ACTIVATOR Poles by Urban Poling, Mandy Shintani. These are great tools especially for gait, balance and confidence issues.

Through the episode, Rebecca and I realize we have a lot to do to prepare mentally, physically, emotionally and spiritually for the next fall. And the fall after that one. And the one after that one.

Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Follow us, Larry & Rebecca Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Thank you to the following people featured in this episode:

Naomi Casiro (Founder/ Registered Physiotherapist) BSc. (Kin), MPT, Certified PWR! https://www.neurofitbc.com/

Nicole Acerra, PhD Nicole Acerra, PhD, is a physiotherapist with a passion for neurological and vestibular rehabilitation. She is one of the authors of the Parkinson Canada’s Preventing Falls Guide

Mandy Shintani OT & Gerontologist, Developer ACTIVATOR Poles & Founder Urban Poling Inc. Learn more about how Activator poles work with PwP at an upcoming free webinar. Register today! The webinar is on Wed April 28 at 7 pm EST/4 pm PST https://us02web.zoom.us/webinar/register/WN_QDm5AfunTZyUmW2yCccU5A

Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada.

Here is a link to the Parkinson’s Canada Preventing Falls Guide.

Thanks also to our content and promotional partners

The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford

Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust. 

PD Avengers - United to end Parkinson’s. Join us.World Parkinson Congress 2022 –Make plans to join us for #WPC2022 in Barcelona, Spain

In this episode of When Life Gives You Parkinson’s, my wife Rebecca and I discover and discuss integrative medicine with Dr. Indu Subramanian. Integrative medicine is where Western and Eastern medicines meet. Activities we all are aware of like yoga, mindfulness, acupuncture and massage are among the activities that fall into integrative medicine.

I first met Indu when she interviewed me on a webinar for PMD Alliance in September 2020. Indu is Canadian, having been born and raised in Ontario, she now lives in LA. She runs the Center of Excellence for Parkinson’s at the West Los Angeles Veteran’s Hospital and is a neurologist on staff at UCLA hospital. She’s also certified in Integrated Medicine, has more than 200 hours of yoga training and loves to explore unconventional and non-pharma treatments to improve life for people with PD.

Her study on loneliness during the pandemic causing an increase of PD symptoms was widely reported on in medical journals, newspapers and popular magazines alike. She is approachable, positive, curious, and empowering. We talk about her love of the brain, the PD Avengers, the power of storytelling, and why integrative medicine does come with some warning labels. We hope you will enjoy this conversation as much as we do.

Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Follow us, Larry & Rebecca Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Thank you to the following people featured in this episode:

Dr. Indu Subramanian, Movement Neurologist over seeing Parkinson’s Center of Excellence at the West Los Angeles Veteran’s Hospital and a neurologist at UCLA Hospital. Follow her on twitter at @drisubramanian 

Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada

Thanks also to our content and promotional partners

The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford

Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust. 

PD Avengers - United to end Parkinson’s. Join us.

World Parkinson Congress 2022 –Make plans to join us for #WPC2022 in Barcelona, Spain.

Credits

Dila Velazquez – Story Producer

Greg Schott – Sound Design

In this episode of When Life Gives You Parkinson’s, my wife Rebecca and I are talking with two leaders of Parkinson's organizations about the impact coronavirus has had on advocacy, collaboration, new programs. Karen Lee and Elizabeth “Eli” Pollard are true leaders with serious minds and senses of humor, and both are visionary when it comes to bringing the Parkinson community together with a purpose. 

Dr. Karen Lee took on the role of President and CEO of Parkinson’s Canada in the middle of the Coronavirus pandemic. She’s taking the work-at-home mandate as a chance to meet and get to know her staff, advocates, and leaders of other organizations virtually, “We talk with all the various groups, look for opportunities, synergies, it's not about trying to compete and were not looking to duplicate efforts, but really looking for efficiencies and opportunities.” Parkinson Canada is also establishing a Parkinson Advisory Council to help inform decisions and make recommendations to the charity.

Eli Pollard, Executive Director of World Parkinson Coalition, would typically make 12 to 15 trips to various destinations as she plans for the World Parkinson Congress 2022 in Barcelona. With travel restricted by COVID-19, she has been busy creating new programs including a dual language webinar series where the same presenters host a webinar first in English and then thirty minutes later in Spanish.  She’s also just announced that May 17-21, 2021 is the inaugural VIRTUAL World Parkinson Congress, “We've been chewing on this idea for a long time and COVID sort of pushed our hand, which is great. So it would be sort of “year one” is the in-person Congress, “year two” and “year three” would be a virtual Congress. And so we're calling it WPC Virtual.” This year’s theme is advancing science care and living with Parkinson's. Their will be around 80 presenter's, with 5 tracks, but all the content for each day will be release at once for virtual attendees to watch it at their convenience. There will be live Q&A sessions 24 hours after each scheduled session. The WPC Virtual admission is $25.00, all inclusive.                                     

Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Follow us, Larry & Rebecca Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Thank you to the following people featured in this episode:

Dr. Karen Lee – President and CEO of Parkinson Canada @Dr_KarenLee

• To learn more about the Parkinson Advisory Council https://www.parkinson.ca/listing/parkinson-advisory-council-member/

Eli Pollard – Executive Director, World Parkinson Coalition #WPC2022

• For more information on Dual Language webinars https://www.worldpdcoalition.org/page/webinarseries
• For more information on 2021’s VIRTUAL World Parkinson Congress https://www.worldpdcoalition.org/page/WPCVirtual
• For more information on the WPC Research Spotlight https://www.worldpdcoalition.org/events/EventDetails.aspx?id=1470125
• For more information on 2022’s World Parkinson Congress in Barcelona https://www.worldpdcoalition.org/events/EventDetails.aspx?id=1470125

Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call the toll free hotline 1-800-565-3000 or on Twitter you can message @ParkinsonCanada

Thanks also to our content and promotional partners

The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford

Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust. 

PD Avengers - United to end Parkinson’s. Join us.

World Parkinson Congress 2022 –Make plans to join us for #WPC2022 in Barcelona, Spain.

In this episode of When Life Gives You Parkinson’s, Larry and Rebecca Gifford welcome 2021 by digging through a sack full of hope. Each week there seems to be another headline that signals major breakthroughs – as in bio-markers and disease altering treatments – are just around the corner for Parkinson’s. We talk to two people who confirm we are on the precipice of major changes in how we view and treat the disease. 

However, it is not just about the diagnosis and treatments. PD advocates come in all shapes and sizes – from 80 year old driveway walkers, to middle aged soccer players, to geeks and nerds sitting behind a computer screen. Each are unleashing their super powers on the PD community and owning it. Get ready for lasers in your head, a race with the moon and the inaugural Parkython. Plus, there’s a tomato… a laser… a magic ring… Uma Thurman….Barcelona, and a serious discussion of wearables for non-invasive measuring of dopamine levels.

If you are a half-glass empty person, this episode will either be so packed with hope is shooting out your ears or you will have 17 more great, positive, groundbreaking, even life changing, “wow” moment things to find flaw with.

Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Follow us, Larry & Rebecca Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Thank you to the following people featured in this episode:

David Vocadlo, Canada Research Chair in Chemical Biology, Simon Fraser University. His research website is here.

Debi Brooks, Co-Founder and Executive Vice Chairman of the Michael J. Fox Foundation. Listen to Episode One of the podcast series “Milestones and Momentum in Parkinson’s Research”

Charlie Appleyard – Learn about Sport Parkinsons here. The “Race the Moon” announcement will be on Monday, January 11, 2021.

Rui Cuoto – Read about Parkython (Parkinsons + Hackathon) and register to be a part of it!

Kevin Krejci – Learn more about the Oura Ring we discussed. 

John Dean – For details on the EPDA’s Keep on Moving and ExerciseCast click the links. 

Ralph & Berys Richardson – Check out Team Ralph on the SuperWalk website

Greg Hicks – Greg documents Ralph’s campaign on Facebook

Special thanks to Pulp Fiction and Uma Thurman’s tomato joke, Dave Clark (Happy 10th-Parkyversary), the generic voice guy for Vie Light, and Babe Ruth for calling his shot. Here’s a link to the photo of the Levodopa Tomato.

Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call toll free hotline 1-800-565-3000, on Twitter @ParkinsonCanada

Thanks also to our content and promotional partners

The Michael J. Fox Foundation Parkinson’s Podcast hosted by Larry Gifford

Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust. 

PD Avengers - United to end Parkinson’s. Join us.

World Parkinson Congress 2022 –Make plans to join us for #WPC2022 in Barcelona, Spain.

In this episode of When Life Gives You Parkinson’s, you will meet Ralph and Berys Richardson who have been married 52 years. Five years ago, doctors diagnosed Ralph with Lewy Body Dementia and then Parkinson’s disease a few years later. When COVID-19 hit, Ralph’s usual exercise programs were cancelled. So, with the help of Berys and his caretaker Greg Hicks, he decided to walk up and down his driveway everyday. He set his mind to doing 30 laps. He reach his goal in 17 days. Then he set his sights a bit higher, walk 100 days to raise $10,000. More than 200 days later, he’s still walking and he’s raised more than $30,000 for Parkinson Canada.

Also, this episode is the final episode for contributor Niki Reitmayer. We say farewell and good luck.

Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Follow us, Larry & Rebecca Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

A fond farewell to Co-host and Producer Niki Reitmeyer. We love you, will miss you and wish all the best. Thanks for going on this journey with us.

Thank you to the following people featured in this episode:

Ralph & Berys Richardson – Check out Team Ralph on the SuperWalk website

Greg Hicks – Greg documents Ralph’s campaign on Facebook

Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call toll free hotline 1-800-565-3000, on Twitter @ParkinsonCanada

Thanks also to our content and promotional partners

Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation

Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.

PD Avengers - We want to help end Parkinson’s disease. Join us.

World Parkinson Congress 2022 –Make plans to join us for #WPC2022 in Barcelona, Spain.

Credits

Dila Velazquez – Story Producer

Greg Schott – Sound Design

In this episode of When Life Gives You Parkinson’s, what happens when the side effects of your medication are causing more harm than the disease itself? Many people with Parkinson’s are treated with dopamine agonists, which work perfectly for thousands of people, but can cause uncontrollable, destructive behaviors for others. Among the issues are compulsive shopping, hyper-sexuality, binge eating, internet addictions, and excessive gambling. Larry, Rebecca and Niki will introduce you to two people with Parkinson’s who experienced impulse control disorder while on agonists. One of them gained 60 pounds and the other went deep in debt, lost her inhibitions, her job and nearly everything else.

Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Follow us, Larry & Rebecca Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Follow Co-host and Producer Niki Reitmeyer

Twitter: @Niki_Reitmayer

Thank you to the following people featured in this

Vicki Dillon – PwP, follow Vicki on Twitter and her website

Ken Robinson – Vicki’s Partner                                                                                                         

Susan O’Rourke – PwP, President of Artfront Galleries in Newark, NJ

Dr. Elana Clar – Neurologist, Movement Disorder Specialist, New Jersey Brain and Spine

Dave Andrews – PwP, Follow Dave on Twitter

Gil Thelon – PwP, Gil writes about Parkinson’s at www.shufflingeditor.com

Dr. Jonathon Squires – Neurologist, Movement Disorder Specialist at Djavad Mowafaghian Centre for Brain Health

Special thanks to Niki Reitmayer for sharing her findings from her UBC Psych 301 Final: Impulse Control Disorders: The Strange Side Effect of Dopamine Agonists When Used to Treat Parkinson’s Disease.

CREDIT: Sex, Lies and Parkinson’s Documentary 2011, Channel 4 production. Directed by Oliver Cheetham, Produced by Oliver Cheetham and James Rogan

Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call toll free hotline 1-800-565-3000, on Twitter @ParkinsonCanada

Thanks also to our content and promotional partners

Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation

Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust. 

PD Avengers - We want to help end Parkinson’s disease. Join us.

World Parkinson Congress 2022 –Make plans to join us for #WPC2022 in Barcelona, Spain.

This season we are talking a lot about Parkinson’s advocacy. From advocating for yourself with your doctor to people with Parkinson’s communicating with law makers, and others who are educating, participating in research or sharing their story whether through a podcast, a blog, a book, Social Media, magazines, or one on one conversations with a friend.

In this episode of When Life Gives You Parkinson’s, host Larry Gifford introduces you to Parkinson’s advocate Christine Jeyachandran. Christine is an Australian living in Peru with her family. They met in Japan at the World Parkinson Congress where she was a finalist in the video competition. Her video tracked her journey to learn gymnastics with PD and ultimately achieve a handstand. Now Christine brings hope, urgency and education to her Parkinson’s advocacy through her website and videos at www.handstandforparkinson.com.

Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Follow us, Larry & Rebecca Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Follow Co-host and Producer Niki Reitmeyer

Twitter: @Niki_Reitmayer

Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call toll free hotline 1-800-565-3000, on Twitter @ParkinsonCanada

Thanks also to our content and promotional partners

Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation

Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust. 

PD Avengers - We want to help end Parkinson’s disease. Join us.

World Parkinson Congress 2022 –Make plans to join us for #WPC2022 in Barcelona, Spain.

Credits

Dila Velazquez – Story Producer

Greg Schott – Sound Design

In this episode of When Life Gives You Parkinson’s, listen in as Larry Gifford gets his sixth month check up with his neurologist. Larry, his wife Rebecca and co-host Niki Reitmayer discuss the importance of trust and communication in building a relationship with your neurologist and all the other members of your care team – even your partner and your friends. Plus, saying “no” to a doctor can be difficult, but it is an important option to use when you do not agree with the prescribed treatment plan.

Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Follow us, Larry & Rebecca Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Follow Co-host and Producer Niki Reitmeyer

Twitter: @Niki_Reitmayer

Thank you to the following people featured in this episode…

Jonathon Squires, MD Djavad Mowafaghian Centre for Brain Health

Heather Kennedy, #WPC2022 Ambassador

Vicki Dillon, #ParkieandProud, GDNF’er

Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call toll free hotline 1-800-565-3000, on Twitter @ParkinsonCanada

Thanks also to our content and promotional partners

Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation

Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust. 

PD Avengers - We want to help end Parkinson’s disease. Join us.

World Parkinson Congress 2022 –Make plans to join us for #WPC2022 in Barcelona, Spain.

Credits

Dila Velazquez – Story Producer

Rob Johnston – Sound Design

In this episode of When Life Gives You Parkinson’s, three of the authors of the book Ending Parkinson’s Disease explain how Parkinson’s is preventable. WLGYP’s host Larry Gifford interviewed Bas Bloem MD, PhD, Ray Dorsey MD, and Michael S. Okun MD for a Parkinson Canada webinar.

Larry, his wife Rebecca and co-host Niki Reitmayer listen, learn and react to the author’s frank discussion of Parkinson’s disease, why they believe it is preventable, who is at risk, how COVID-19 maybe triggering the onset of PD, and why more and more experts believe it to be a global pandemic. 

Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Follow us, Larry & Rebecca Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Follow Co-host and Producer Niki Reitmeyer

Twitter: @Niki_Reitmayer

Thank you to the following people featured in this episode…

Bas Bloem MD, Phd, Ray Dorsey, MD and Michael S. Okun, MD – details on their book are available at www.endingpd.ord

Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call toll free hotline 1-800-565-3000, on Twitter @ParkinsonCanada

Thanks also to our content and promotional partners

Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation

Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust. 

PD Avengers - We want to help end Parkinson’s disease. Join us.

World Parkinson Congress 2022 –Make plans to join us for #WPC2022 in Barcelona, Spain.

In this episode of When Life Gives You Parkinson’s, you will learn when and how to switch neurologists and what doctor’s find annoying about you.

It may be hard to believe, but doctors do not know everything about treating Parkinson’s disease. From ridiculous diagnosis stories, tragic treatment options, lack of empathy, the God complex and life altering misdiagnosis, many people with Parkinson’s have been through wringer and ultimately fired their neurologist.  

The doctor-patient relationship is critical for treating Parkinson’s. “It’s really important to have someone you can talk to openly and honestly and who listens to you,” says Dr. Rachel Dolhun, a board certified movement disorder specialist and Vice President of Medical Communications for the Michael J. Fox Foundation. “Parkinson's is really all about expressing how things are going on a daily basis, how your medicines are or aren't working, and how new symptoms are coming up or how symptoms are changing.”

In addition to Dr. Dolhun, this episode features conversations with a number of people with Parkinson’s including Dave Clark, Gil Thelan, and Jeanette Fisher-Pynn.

Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Follow us, Larry & Rebecca Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Follow Co-host and Producer Niki Reitmeyer

Twitter: @Niki_Reitmayer

Thank you to the following people featured in this episode…

Dr. Rachel Dolhun – Board Certified Movement Disorder Specialist and Vice President of Medical Communications for the Michael J. Fox Foundation. Hosts “Ask the MD” Blog and Videos.

Dave Clark – PwP, former Sky Sports television announcer, Parkinson’s advocate and fundraiser.

Gil Thelen – PwP, former President and Publisher of The Tampa Tribune, and author of “Counterpunch: Duking It Out With Parkinson’s.”

Jeanette Fisher-Pynn – PwP, and featured in our “Misdiagnosis” episode

Also appearing…

Ellen Bookman – www.pdboxing.org and on Twitter @luvlivin3

David Ashford Jones – Former Pharmaceutical Executive turned Parkinson’s advocate

Jill Carson – PwP, founder of Parkinson’s Wellness Project in Victoria, BC

Kitty Fitton – PwP, www.kittyfitton.com     

Michael S. Fitts – Michael J. Fox Patient Council

Heather Kennedy – PwP, a.k.a. Kathleen Kiddo, featured in this previous episode on the darkness of depression.

Dr. Stuart Factor - Professor of Neurology, Director of the Movement Disorders Program and Vance Lanier Chair of Neurology at Emory University School of Medicine

Diagnosed with Parkinson’s? You are not alone. Contact presenting partner Parkinson Canada http://www.parkinson.ca/, call toll free hotline 1-800-565-3000, on Twitter @ParkinsonCanada

Thanks also to our content and promotional partners

Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation

Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust. 

PD Avengers - We want to help end Parkinson’s disease. Join us.

World Parkinson Congress 2022 –Make plans to join us for #WPC2022 in Barcelona, Spain.

In this premiere episode of season three of the podcast, my wife Rebecca, co-host Niki Reitmayer and I discuss what life it like with Parkinson’s three years after diagnosis and what impact has COVID-19 had on us and others with PD.

Communication came up as a relatively new and big issue in the Gifford home. For 20 years, our instinctive interactions were a fun and easy part of our relationship. Now I take things literal when Rebecca is being figurative, she has to repeat herself over and over again, and I get trapped in my Parkinson’s bubble at certain times of the day.

“It gets frustrating,” says Rebecca. “Because, I've repeated myself a couple of times on something and it's still not retained. For me, it's re learning patience and understanding and knowing that it's not just that he's too busy and he's not paying attention or whatever. No, it's the Parkinson's.” Larry and Rebecca also share how they are working together and individually to improve the communication glitches the Parkinson’s is causing. 

Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Follow us, Larry & Rebecca Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Follow Co-host and Producer Niki Reitmeyer

Twitter: @Niki_Reitmayer

Thank you to…

Omotola Thomas www.parkinsonafrica.com

Sally Bromley https://oxfordparkinsons.org.uk/

Jayne Calder a-million-for-gdnf.org/">https://www.raise-a-million-for-gdnf.org/

For more info on our presenting partner Parkinson Canada head to http://www.parkinson.ca/

The toll free hotline 1-800-565-3000

Or follow them on Twitter

Parkinson Canada       @ParkinsonCanada

Thanks also to our content and promotional partners

Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation

Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust. 

PD Avengers - We want to help end Parkinson’s disease. Join us.

World Parkinson Congress 2022 –Make plans to join us for #WPC2022 in Barcelona, Spain.

In this episode of When Life Gives You Parkinson’s, my wife and partner in Parkinson’s, Rebecca Gifford, and I explore the important role caretakers play in lives of people with Parkinson’s. We visit with people we met through season two to discuss the balance between being a spouse and a caregiver; we wrestle with what to call these important people and wonder why the medical and scientific communities do not listen to them more closely and tap them for real knowledge about living with Parkinson’s disease.

Through the discussions, it has become clear to me that our partners are amazing people who care for us and prepare, as best they can, to deal with all of our unpredictable PD symptoms. And they also have responsibility to run the household, sometimes over small children and pets, and then their own self-care, their own interests and careers get whatever time is left over.

Usually very little, if any time is ever leftover.

Sure, we’ll travel while we can and set off on new adventures as COVID, money, and time allows. Life doesn’t end with a diagnosis. It changes. It constantly changes.

As years roll on, these amazing people will bear witness to their partner’s silent suffering as Parkinson’s slowly traps the person they love inside a body that will no longer obey. 

Each minute…

Each day… 

Each year...

Parkinson’s tightens its grip.

In my case, the disease has already begun to restrict my ability to be present at times and to empathize.  Slowly, this relentless, degenerative neurological brain disorder causes disorder in my brain. It steals my thoughts and my voice. In time, I know Rebecca will be there to support, care, challenge me and others, and advocate on our behalf. A writer by trade, she will find clarity and might in putting pen to paper, invoking the compassion of Quan Yin and just the right words to strike like lightning and reverberate like thunder. 

There are millions of people like my wife who have untapped knowledge and a lived experience with Parkinsons that researchers and neurologists could leverage in making life better for people with Parkinson’s until that day when we find a way to end it.

We should all demand to hear what they have to say. Immediately.

We are all up against the clock.

Follow me, Larry Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Thank you to:

Tim & Sheryl Hague Check out their holistic Parkinson’s center at “U-Turn Parkinson’s” and follow Tim on Twitter and Instagram @TimHagueSr  

Deana Grinnell

Jimmy Choi – follow Jimmy on Twitter @JCThr33 and on Instagram @jcfoxninja 

Gila Bronner – Director of Sex Therapy Services at Sheba Medical Center.

Ellen Bookman – Ellen is very active in her PD boxing community www.pdboxing.org. Follow Ellen on Twitter @luvlivin3

Joe & Sarah Possenti

and to my wife and partner in Parkinson’s Rebecca Gifford. Follow her on Twitter @RebeccaJGifford and on Instagram @loveandmud  

Our presenting partner is Parkinson Canada http://www.parkinson.ca/

The toll free hotline 1-800-565-3000

Follow them on Twitter @ParkinsonCanada

Find the new Parkinson Clinical Guideline www.parkinsonclinicalguideline.ca

Our content and promotional partners

Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation.

Navigating Parkinson’s and COVID-19 Podcast: Check out the limited series podcast on COVID-19 and Parkinson’s that I am hosting with Dr. Rachel Dolhun for the Michael J. Fox Foundation.

Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust. 

WPC2022- Save the date for the sixth World Parkinson Congress, June 7 to 10, 2022 in Barcelona, Spain in 2022. The only inclusive scientific conference opens its doors to people with Parkinson’s and families.  

In this episode of When Life Gives You Parkinson’s, I interviewed the founder of ESPN, Bill Rasmussen, who publicly announced his Parkinson’s in 2019. Bill was diagnosed six years ago, he is still active and still travels around the country giving talks to students and business leaders. At first, he says, he tried to hide his symptoms during his speeches.

“My left hand is the one that has the biggest twitch, so to speak. I thought I'd keep it behind the podium or this or that, and after one event, they sent me a tape and I looked and that wasn't very effective. And so at that point, I said, "You know what? This is a fact of life. It's not anything to be embarrassed about. People catch cold, people break their leg, people knock their head up against a wall or whatever. And that's okay so why isn't Parkinson's okay?"

The 87-year old takes medication each day, strives to keep operating at the same level as before his Parkinson’s diagnosis, and still wakes up each morning with a positive thought. As you might expect from the founder of ESPN, he has an analogy in regards to PD. He says,”The researchers are like the official scorekeepers up in the booth, but we are the players on the field. We’re walking through it every day. They can study my brain, but I have to use my brain. And they can study your brain, but you have to use your brain to get through each day. And those are the things that I think if we can convince people when you hear the word Parkinson's, you don't stop thinking, you don't stop living or any of those things. You adjust and keep on keeping on, as they say.”

My interview with Bill Rasmussen is featured as part of limited series of podcasts produced by the Michael J Fox Foundation, co-hosted by Rachel Dolhun, and me. All the episodes can be found online at The Michael J Fox Foundation for Parkinson’s Research website.

Follow me, Larry Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

In this episode of When Life Gives You Parkinson's, I explore how the collision of health, technology and innovation in the private sector is revolutionizing approaches to measuring brain activity and treat brain related issues from Parkinson’s to major brain injuries and concussions.

A major part of having Parkinson's disease is finding out what matches you in terms of diet, exercise, pharmaceuticals, therapies and relationships so you can manage your symptoms and maintain the best quality of life for as long as possible. But, are you aware of everything that's out there that you could be using? I wasn't. From hand-made, steel stationary bikes designed especially for people with Parkinson’s to a tongue stimulator to improve your balance and walking gait, I feel as if I’ve found a secret Bat-cave of cool, technology that I never knew existed. All of it comes with a price tag and insurance does not cover it.

DISCLAIMER: I am not a spokesperson for these companies or products, they are not clients and have not paid for this placement. These products and services are part of my journey in exploring all the ways to live my best life with Parkinson’s.

First, the stationary bike. It is called the Theracycle. Joe Possenti bought a Theracycle a year ago and uses it most days. He has had Parkinson’s for 12-years. He told me it’s a game-changer for him. The 200-pound, motorized cycle is designed to improve the lives of people with degenerative brain diseases and works by having assisted pedaling and handlebars that move like an elliptical machine and a the rowing machine.

The most popular Theracycle costs $4,800 ($6,700 CAD), is delivered free in the continental United States and comes with a money-back guarantee.

There is quite an operation underway in Surrey B.C. Recently, I toured The Health and Technology District, which is located across the street from Surrey Memorial Hospital. It is the brainchild of Dr. Ryan D’Arcy, a neuroscientist and entrepreneur.

Dr. D’Arcy says there are 75 tech companies and 96 medical specialists integrated, collaborating and bumping into each other in one building alone.

As I toured the facility, I realized I was not aware how many available treatments there are for the symptomatic issues of Parkinson’s. For instance, I saw two really cool therapies for treating gait issues so people can learn to walk normally again. The Lokomat, at NeuroMotion Physical Therapy, reminds me of Iron Man. Patients slip on these huge robotic legs strapped to a treadmill. Through forced and repeated motion, new neuropathways are created which retrains your brain’s communication to your legs and feet.

The second treatment is called PoNS, which is short for Portable Neuro-modulation Stimulator.  This lightweight portable device slips around your neck rather snug and hanging off one end is a rectangle pad which goes into your mouth. It stimulates your tongue. Sonya Brody is a neuroscientist and the Vice President of services at the Surrey Neuroplasticity Clinic, and she told me we all have 12 cranial nerves that come off the back of our brain and two of them connect to the front, one-third of your tongue.

One of the ongoing issues with treating Parkinson’s is the measurement tools for the disease progression and executive function are too subjective. Dr. D’Arcy created The NeuroCatch™ to take the guesswork out of measuring what is going on inside your head. It’s a six-minute test that measures auditory sensation, basic attention, and cognitive processing. Not only helpful with measuring brain function in people with Parkinson’s, but D’Arcy is working with hockey clubs to conduct the 6-minute test during games to determine if a player has a concussion or not.

Another machine affectionately referred to as the “barf box,” measures balance. The res.pdf">NeuroCom® SMART Balance Master® measures how well your eyes, inner ear and muscles and joints are working together to maintain balance. The client stands in the center of a metal plate surrounded by three colourful walls. Through a series of short tests the plate moves, the walls tilt, and eyes are sometimes open and sometimes closed.

During my tour, I tested both my brain function and my balance. My scores on both systems were less than impressive, which is no surprise. But, what is a surprise is that these treatments and tools exist and I was oblivious to them until now. It makes me wonder what else is out there and available to the Parkinson’s community.

The different tests and treatments cost anywhere from $150 for one test on the NeuroCom® SMART Balance Master® or reportedly between $14,000 to $16, 000 for 14 weeks of treatments with the PoNS device.

Please comment by leaving us a voice message here: https://www.speakpipe.com/WhenLifeGivesYouParkinsons.

Follow me, Larry Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Thank you to:

The Health & Technology District

Dr. Ryan D’Arcy, Neuroscientist and Co-Founder of the Health and Technology District

Anne Shaw, Clinic Manager at Neuromotion Physiotherapy and Rehabilitation

Sonia Brodie, Neuroscientist and VP of Services at the Surrey Neuroplasticity Clinic

Matieu Gagnon, Kinesiologist at the Surrey Neuroplasticity Clinic

Theracycle

Rich Bloomenthal, Head of Sales at Theracyle

Joe and Sarah Possenti

Al Coen, Coen Communications; Cameraman, Video and Audio producer, Editor, big supporter of the pod, and all around great guy.

and to my wife and partner in Parkinson’s Rebecca Gifford.

Our presenting partner is Parkinson Canada.

Its toll-free hotline is 1-800-565-3000.

Follow Parkinson Canada on Twitter @ParkinsonCanada.

Find the new Parkinson Clinical Guideline at www.parkinsonclinicalguideline.ca.

Our content and promotional partners

Parkinson’s IQ + You — A free, series of Parkinson’s events from the Michael J. Fox Foundation

Spotlight YOPD — The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.

WPC2022 — Save the date for the sixth World Parkinson Congress, June 7 to 10, 2022 in Barcelona, Spain. The only inclusive scientific conference opens its doors to people with Parkinson’s and families.

In this episode of When Life Gives You Parkinson’s, my wife and partner in Parkinson’s, Rebecca Gifford and I share how COVID-19 is affecting our family. From managing stress and PD symptoms to becoming accustomed to living well during a time of uncertainty, we are all learning many lessons. Here are five of the lessons that Rebecca and I have learned thus far:

• My Parkinson’s symptoms are less intense when I work from home compared to when I go to the office. This is a revelation that I probably would not have discovered without the pandemic forcing me to work remotely. I have already started discussing this with my company to figure out what my new reality could be when we are through the social distancing demands and most employees are encouraged to return to the office.
• Telemedicine is long overdue. I didn’t “go” to my last neurology check-up, I logged into it from my kitchen table. I feel like I had the full attention of my doctor and there we no interruptions for signatures, questions or updates on other patients from the nurses. It was just the doctor, Rebecca and me. If you live hours away from a neurologist or movement disorder specialist or just have difficulty getting from your home to anywhere, telemedicine makes a lot of sense. I hope it is here to stay.
• Connecting with community can be energizing, supportive and inspiring. From one on one FaceTime video calls with family and friends or group video chats with colleagues and social media “friends” who, until now, we had only met through tweets and Facebook posts. I’m grateful for the time, attention and community so many people have offered with an open heart and open mind. I also love that so many free exercise, yoga, and boxing classes are now being made available online to keep us active and exercising despite being cooped up inside.
• Managing Parkinson’s symptoms has better prepared people with PD and care partners for COVID-19. The uncertainty of Parkinson’s forces us to approach life minute by minute, hour by hour, and day by day. We make plans with the best of intentions and cancel them more often than we would like because a symptom flares up or exhaustion overwhelms us. Most people are not accustomed to have so much lack of control of their life. Many are resisting the isolation, are angry, frustrated, and are desperately grasping for control of something. The Parkinson’s community can be role models for others on how to let go and embrace what comes in each moment.  
• It is exciting to see how when the world decides to make something a priority, Government and regulatory red tape magically disappears and the finest minds of the world collaborate to solve a single issue. In this case, it is the race to creating a vaccination for COVID-19. Now that we know it is possible, I propose after COVID-19 is under control, we take this model and aim those global resources and all of that passion and urgency on to finding a cure for Parkinson’s… and then ALS, MS, Alzheimer’s and all the rest.

In the podcast, we discuss these and many other lessons and observations COVID-19 has thrust upon us.

Please take time to share what lessons, observations and coping mechanisms you have discovered during these unprecedented times by leaving a voice message here:  https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Follow me, Larry Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Follow Co-host and Producer Niki Reitmayer

Twitter: @Niki_Reitmayer

Thank you to my wife and partner in Parkinson’s Rebecca Gifford.

Our presenting partner is Parkinson Canada http://www.parkinson.ca/

The toll free hotline 1-800-565-3000

Follow them on Twitter @ParkinsonCanada

Find the new Parkinson Clinical Guideline www.parkinsonclinicalguideline.ca

Our content and promotional partners

Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation

Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust. 

WPC2022- Save the date for the sixth World Parkinson Congress, June 7 to 10, 2022 in Barcelona, Spain in 2022. The only inclusive scientific conference opens its doors to people with Parkinson’s and families.  

In this special Parkinson’s Awareness Month episode of When Life Gives You Parkinson’s, I chat with Jimmy Choi. Jimmy was diagnosed with Parkinson’s seventeen years ago. He ignored it for eight years. He took his pills every day, but he didn’t talk about it, he ignored it, he hid it and lied about it to friends and family.

He was quite certain himself that the Parkinson’s diagnosis was probably wrong. “I convinced myself that one day I'm going to wake up and my doctor is going to tell me that, ‘Oh I'm sorry Mr. Choi, we made a mistake.” Jimmy continues his fantasy, “You actually have a tumor in your head. Once we remove it you're gonna be perfectly fine.’”

Jimmy is stubborn. It takes a lot to change his position. But, Parkinson’s will not be ignored. Over the course of eight years, gradual changes happen on a daily basis. Insomnia, rigidity, and fatigue were all taking a toll on him. Parkinson’s disease pushed Jimmy to the edge. And he fell.

“I was walking with a cane. I was no longer active. And as if things weren't bad enough, I was snapping at my family, screaming at my kids, and sitting around really not contributing to the daily activities of a household. I was walking down the stairs with my then 8 month old son Mason and we fell down the stairs.”

His wife Cheryl and their daughter Karina watched in horror. At that moment, Jimmy made a decision that would change his life forever. He knew he was going to work hard to become the dad and husband his family deserved. He also began to participate in clinical research trials. It was during those trials, Jimmy realized exercise was a component of every trial he participated in and when he exercised he felt better.

On his own, he began to take walks around the neighbourhood with his cane. And before too long, he was walking without it. His walk become a jog and his jog trained him for a 5k. Jimmy successfully transformed his stubborn resistance to Parkinson’s into determination, positivity and persistence in living an active, healthy life with the disease.

In the past seven years, Jimmy has participated in over 100 half marathons, 15 full marathons, one ultra-marathon, six Grand Fondo rides, multiple Spartan Races and countless 5K and 10K runs. He became a high profile Parkinson’s advocate when he competed on American Ninja Warrior. Through his events, Jimmy has raised more than $250,000 for Parkinson's research.

You don’t have to be Jimmy Choi when you’re exercising, but you can be Jimmy Choi in how you approach your Parkinson’s disease. He takes his PD one day, and sometimes one hour, at a time. His mantra is, “make today a little better than yesterday and make tomorrow a little bit better than today.”  

Knowing Jimmy Choi is in the fight against Parkinson’s, makes today better yesterday already.

Please comment by leaving us a voice message here: https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Follow me, Larry Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Follow Co-host and Producer Niki Reitmayer

Twitter: @Niki_Reitmayer

Thank you to my wife and partner in Parkinson’s Rebecca Gifford.

Also, thank you to the following contributors and guests.

Follow Jimmy Choi on twitter and instagram

Our presenting partner is Parkinson Canada http://www.parkinson.ca/

The toll free hotline 1-800-565-3000

Follow them on Twitter @ParkinsonCanada

Find the new Parkinson Clinical Guideline www.parkinsonclinicalguideline.ca

Our content and promotional partners

Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation

Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust. 

WPC2022- Save the date for the sixth World Parkinson Congress, June 7 to 10, 2022 in Barcelona, Spain in 2022. The only inclusive scientific conference opens its doors to people with Parkinson’s and families.  

In this special Parkinson’s Awareness Month episode of When Life Gives You Parkinson’s, I chat with leaders of three Parkinson’s organizations about the never-ending hunt for a cure. The world has been five years away from a cure for Parkinson’s for the last thirty years or so. That sentiment is an update from when Tom Isaacs uttered a similar phrase in the early 2000’s. Isaacs had Parkinson’s and was a fierce advocate for those living with the disease. He co-founded Cure Parkinson’s Trust in England in 2005.

Today, that organization’s Deputy CEO, Helen Matthews, continues to carry Tom’s torch. She says we are an awful lot closer to a cure than we were 15 years ago. However, “for there to be a game changer,” Matthews says, “Parkinson's needs to be a global health priority recognized by governments globally who are properly investing in this.” Matthews points to Australia, where the government has allocated $30 million over five years to identify disease-modifying drugs to slow the progression of Parkinson’s. “You know, we need further injections of cash here in the UK. We need further injections of cash in Canada. We need consortiums working in all territories. You know, North America really investing and making sure that Parkinson's is a health priority.”

Of note, Parkinson Canada has requested $30 million over five years from the Federal Government to establish the Canadian Open Parkinson’s Network. C-OPN would be a shared, open data platform with the goal to accelerate breakthroughs, improve patient outcomes, increase clinical trial involvement, and ultimately find a cure for this life-limiting disease. It would establish Canada as another leading country in the global commitment to ending Parkinson’s disease. The 2020 Federal Budget was to be unveiled on March 15th, but has been indefinitely delayed due to COVID-19.  

Marking 20 years in operation and having invested one billion dollars in Parkinson’s research dollars, The Michael J. Fox Foundation has learned a thing or two over the past two decades. Deputy CEO Sohini Chowdhury is grateful they have raised such a mind-blowing amount of money for research, but is careful to keep it in perspective. “When you think about drug development in general, “ Chowdhury says, “the numbers that are often cited or that it takes anywhere between 12 and 15 years to get a drug moving through the development process and into patients hands and that it can cost upwards of a billion dollars that entire process.” 

At Parkinson’s UK, Chief Executive Steve Ford and his team have committed 8 million pounds equivalent to more than 14 million Canadian dollars for Parkinson’s research each year. Ford also has helped to establish The Critical Path for Parkinson's. “We've brought together foundations from around the world. The Fox Foundation and the Parkinson's Foundation are involved in this. Ten or eleven global pharmaceutical companies are involved as well.” Ford continues, “And what this is doing is bringing everybody together, sharing data, drug company data, clinical trial data, and the kind of data that some researchers all around the world have from following patients up over a number of years.” All that information is used to shape the future of clinical trials and to work with the regulators to get that kind of approved.”

With this approach, individual companies do not have to go and get their own kind of trial design approved by the regulator and spend millions of pounds dollars doing that. The Critical Path for Parkinson’s consortium can do that on behalf of the whole industry, which dramatically reduces the costs of designing new research studies.

As more than ten million people with Parkinson’s in the world await the evasive cure, we hold on to hope and Tom Isaac’s believe that a cure is possible.

Please comment by leaving us a voice message here: https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Follow me, Larry Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Follow Co-host and Producer Niki Reitmayer

Twitter: @Niki_Reitmayer

Thank you to my wife and partner in Parkinson’s Rebecca Gifford.

Also, thank you to the following contributors and guests.

Helen Matthews, Deputy CEO, Cure Parkinson’s Trust – Follow CPT on twitter @CureParkinsonsT

Steve Ford, Chief Executive, Parkinson’s UK – Follow PUK on twitter @parkinsonsuk

Sohini Chowdery, Deputy CEO, Michael J. Fox Foundation for Parkinson’s Research – Follow MJFF on Twitter @michaeljfox.org

Our presenting partner is Parkinson Canada http://www.parkinson.ca/

The toll free hotline 1-800-565-3000

Follow them on Twitter @ParkinsonCanada

Find the new Parkinson Clinical Guideline www.parkinsonclinicalguideline.ca

Our content and promotional partners

Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation

Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust. 

WPC2022- Save the date for the sixth World Parkinson Congress, June 7 to 10, 2022 in Barcelona, Spain in 2022. The only inclusive scientific conference opens its doors to people with Parkinson’s and families.  

In this special Parkinson’s Awareness Month episode of When Life Gives You Parkinson’s, I chat with Heather Kennedy. Heather, recently named an Ambassador to the World Parkinson Congress 2022, is a fierce Parkinson’s advocate from San Francisco. Heather tackles some tough topics; being a woman with PD, dating with bladder urgency, and depression.

“Depression? It’s tricky,” she says. “It creeps up, it lies to you, it tells you that you’re nothing, that you’re useless, and that there are millions and billions of people and you don’t matter.” Heather’s action plan for emerging from the darkness includes volunteering and making small positive gestures to people in her community. It gives her something to cling to when the blanket of depression envelops her, “When depression tries to get me, I think ‘hey, people might be depending on me. I’m going to get up for them.’” 

The former film and photography production assistant shares her journey online through her alter-ego Kathleen Kiddo, a pen name and a license to be a raw, real and revealing. “I’ve always kept a journal and I love it. It’s a way to clarify and share with the world. It’s a little window to these stories, miraculous stories  – some of which I don’t even know where they come from. They don’t even belong to me.” When you read her social media posts and blog or watch her videos, you quickly realize Heather is funny, bright, sarcastic, creative, inspiring and always finding new, amazing ways to share her Parkinson’s story.

Please comment by leaving us a voice message here: https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Links we mentioned and source material for the show:

Kathleen Kiddo – www.KathleenKiddo.com, on Twitter, on Facebook and Instagram

The Inner Sanctum episode featuring the murderous character “Larry Gifford” is from May 15, 1945.It’s called The Black Art https://www.speakingofradio.com/interviews/brown-himan-producer-director/

Follow me, Larry Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Follow Co-host and Producer Niki Reitmayer

Twitter: @Niki_Reitmayer

Thank you to my wife and partner in Parkinson’s Rebecca Gifford.

Also, thank you to the following contributors and guests.

Heather Kennedy aka Kathleen Kiddo. Follow her! www.KathleenKiddo.com,

Disney Pixar’s Inside Out

CBS Mystery Theater,

The Creaking Door

Inner Sanctum Radio

The estate Himan Brown

Speaking of Radio.com

Our presenting partner is Parkinson Canada http://www.parkinson.ca/

The toll free hotline 1-800-565-3000

Follow them on Twitter @ParkinsonCanada

Find the new Parkinson Clinical Guideline www.parkinsonclinicalguideline.ca

Our content and promotional partners

Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation

Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust. 

WPC2022- Save the date for the sixth World Parkinson Congress, June 7 to 10, 2022 in Barcelona, Spain in 2022. The only inclusive scientific conference opens its doors to people with Parkinson’s and families.  

In this special Parkinson’s Awareness Month episode of When Life Gives You Parkinson’s, I chat with Dave Clark. Dave is a television presenter for SKY TV Sports from Leeds, England. He’s best known for anchoring darts and boxing coverage. His positivity is infectious. He was diagnosed with Parkinson’s in early 2011, but nearly a decade on he’s still broadcasting, has a great attitude, is raising tons of money and attention for the cause.

Later this year, he will walk the length of Hadrian's Wall and climb Mount Everest to the base camp at 17,000ft, to raise funds for Parkinson's UK. He has already generated £500,000 towards the charity's work. He also recently announced he will be donating his brain to medical science – to help find a cure for Parkinson’s.

During this conversation, we discuss what it was like to tell our bosses about our Parkinson’s, what it was like to meet The Boss (Bruce Springsteen) and why covering Muhammad Ali at the Atlanta Olympics back memories of his father. Dave and I also chat about how social media can be a blessing and curse, commiserate on the anxiety we feel as passengers in a car, and how frustrating it is that people still confuse our symptoms for intoxication.

Dave also shared the follow advice for people newly diagnosed with Parkinson’s. He shares this with anyone who contacts him and ask for guidance.

How to live a happy life with Parkinson’s by Dave Clark

• Live in the now. Try not to look too far in the future.
• Always have something in the diary that excites you.
• If music makes you happy, don’t live in a silent house where you can brood.
• Dance, even if you haven’t danced for years.
• Keep busy, but don’t feel guilty about having the odd sofa day.
• Stay sociable. If your friends don’t ring you, ring them and arrange to see them on a regular basis.
• Get up. Dress up. Show up. Never give up.
• Say YES to invitations, even if you’re feeling rubbish.
• Exercise makes you feel good, even if you can only manage to get to the corner shop – do it!
• Stretch every morning.
• Eat well. Try not to skip meals when you’re shaky. Food is brain fuel.
• Water makes up about 73-percent of the human brain and helps to make hormones and neurotransmitters.
• Talk to other people with Parkinson’s online. It’s a really supportive community. Their experience can help your experience.
• Build a support team around you with people you can trust: friends, neighbours, physio therapist, neurologist, pharmacist, etc. This is “Team YOU.”
• Only tell people about your Parkinson’s when you are ready. Other people’s grief about your diagnosis can be as hard to deal with and process as the diagnosis itself.
• Remember, people with Parkinson’s can do amazing things. Do something amazing.

Please comment by leaving us a voice message here: https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Links we mentioned and source material for the show:

Sky TV feature article on Dave’s Parkinson’s and his goal to climb to Everest base camp in 2020

Follow me, Larry Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Follow Co-host and Producer Niki Reitmayer

Twitter: @Niki_Reitmayer

Thank you to my wife and partner in Parkinson’s Rebecca Gifford.

Also, thank you to the following contributors and guests.

Dave Clark. Follow Dave on twitter @DaveClarkTV

Our presenting partner is Parkinson Canada http://www.parkinson.ca/

The toll free hotline 1-800-565-3000

Follow them on Twitter @ParkinsonCanada

Find the new Parkinson Clinical Guideline www.parkinsonclinicalguideline.ca

Our content and promotional partners

Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation

Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust. 

WPC2022- Save the date for the sixth World Parkinson Congress, June 7 to 10, 2022 in Barcelona, Spain in 2022. The only inclusive scientific conference opens its doors to people with Parkinson’s and families

In this episode of When Life Gives You Parkinson’s, I talk with Professor of Neurology Ray Dorsey, MD from University of Rochester and the CEO of the Michael J. Fox Foundation Todd Sherer, PhD. These are two of the fourth authors behind a new book called, “Ending Parkinson’s Disease, a prescription for action.”

Dorsey, Sherer and co-authors Michael S. Okun, MD at University of Florida and Bastiaan Bloem, MD, PhD of the Netherlands, each approach Parkinson’s disease from a specific point of view. Dorsey is a telehealth and home healthcare advocate who has been using technology to see patients remotely for more than a decade. He directs the Center for Health and Technology, which offers free care to anyone in New York that has Parkinson’s disease. His mission is to offer to anyone, anywhere. Sherer is neuroscientists who was part of a team that found the link between pesticides and Parkinson’s. Okun is a pioneer of surgical treatments for Parkinson’s. Bloem is co-creator of ParkinsonNet, the world’s largest integrated care program for Parkinson’s disease which is customize and individualized networked treatment which can include nutritional advice, physical therapy, occupational therapy, speech therapy, exercise, clever IT, community and hope.

Their book clearly portrays Parkinson’s disease as a formidable antagonist. They describe Parkinson’s as a “man-made pandemic,” which thrives today, doubling the rate of diagnosis every 25 years, with no known cure and not enough urgency to slow the spread.

The authors point to research which suggests Parkinson’s disease was fueled initially by the industrial revolution and continues to be diagnosed at a rate greater than the rates of aging or population growth due to pesticides that attack the nervous systems of bugs (and people), solvents, contaminated well water, and head trauma.

The authors conclude Parkinson’s disease may be man-made. However, just as humans contributed to the rise of Parkinson’s in the nineteenth and twentieth centuries, we can now work together to eradicate the disease. Readers are called to action by focusing on prevention, advocacy, care and treatment. The book concludes with a list of twenty-five concrete steps we can and should take to reduce the worldwide toll of this disease. The list includes banning specific pesticides and solvents, and cleaning up contaminated sites, which will all take vigorously lobbying to the governments of many countries. But there are things they suggest you can do today to reduce your risk of getting Parkinson’s: use a water filter, eat a Mediterranean diet, vigorously exercise for four hours a week, get involved with research, and if you already have Parkinson’s – be loud and share your story.

Please comment by leaving us a voice message here: https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Links we mentioned and source material for the show:

Ending Parkinson’s Disease book official website

Parkinson’s Disease Care New York  – Free Care for New Yorker’s with Parkinson’s disease

Follow me, Larry Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Follow Co-host and Producer Niki Reitmayer

Twitter: @Niki_Reitmayer

Thank you to my wife and partner in Parkinson’s Rebecca Gifford.

Also, thank you to the following contributors and guests.

Ray Dorsey, MD – following him on Twitter @RayDorseyNeuro

Todd Sherer, PhD, CEO of the Michael J. Fox Foundation

Our presenting partner is Parkinson Canada http://www.parkinson.ca/

The toll free hotline 1-800-565-3000

Follow them on Twitter @ParkinsonCanada

Find the new Parkinson Clinical Guideline www.parkinsonclinicalguideline.ca

Our content and promotional partners

Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation

Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust. 

WPC2022- Save the date for the sixth World Parkinson Congress, June 7 to 10, 2022 in Barcelona, Spain in 2022. The only inclusive scientific conference opens its doors to people with Parkinson’s and families.  

In this episode of When Life Gives You Parkinson’s, despite some setbacks there is still an appetite to trial a treatment for Parkinson’s that many believe is the antidote. GDNF or Glial cell line derived neurotrophic factor are naturally occurring and are vital for normal functioning of the brain.But, when GDNF is delivered directly to the brain, for some people, it is as if they’ve never had Parkinson’s.

The phase II GDNF trial at University of Bristol, seemingly, was made possible through the sheer will and force of the late Parkinson’s advocate Tom Isaacs and his Cure Parkinson’s Trust. The broadcast of Tom’s BBC Radio 4 documentary, “Chasing a Cure,” about the treatment, was heard by Vicky Dillon. She vowed if it ever came around again she’d sign up. And she did. “We were the guinea pigs basically to see if we would tolerate the surgery and the insertion of all this plumbing in our brains,” she said. “They cut me from my hair line to like the middle part of my head and then put in all four catheters that went deep into the into my brain. And then you had another bit of plumbing that run down the side of your head to a port behind you left ear, which is where the infusions were given. So, there was quite a lot of stuff in there.” Vicky was given GDNF for the better part of two years. Her symptoms improved almost immediately, “By the time I took the second infusion, I noticeably felt different. I remember waking up a couple of days afterwards and there was no Parkinson symptoms for about an hour or so. I thought, ‘oh my God!’. And gradually everything started getting better.”

Vicky’s symptom improved 63% and all the participants showed cell regeneration on PET scans, but the trail did not meet its primary end point. “That’s ridiculous,” says Jayne Calder. Her husband Darren was also in the trial and it improved his symptoms more than 50%. “Without any doubt whatsoever in 100 percent of those participants minds we have got the cure for Parkinson's.”

 Vicky and Jayne are leading the charge to raise awareness and money for another trial. They have been very vocal. They’ve even recorded a song called “Shine” by the G.D.N.F.ers. Each download includes a donation to another GDNF trial. They have also caught the attention of Parkinson UK. The organization’s chief executive Steve Ford is ready to throw massive amounts of money towards the project if everything on the application looks right. “We spend around eight and a half million pounds annually. That's eleven or twelve million dollars a year on research. We haven't seen the application yet, but we envisage it's going to be in the order of an annual spend on research. So, that's not significant more than we've ever spent before.” Recruiting for the next GDNF trial is expected to begin by the end of 2020 or just after the first of the year 2021.

Please comment by leaving us a voice message here: https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Links we mentioned and source material for the show:

U.S. TRIAL | Phase 1 trial of GDNF is slated for 2022 will test viral vectors for delivering GDNF in escalating doses.

RADIO DOCUMENTARY | BBC Radio 4 “Chasing a Cure” with Tom Isaacs

WEBSITE | ScienceofParkinsons.com

FUNDRAISER | a-million-for-gdnf.org/">Raise a Million for GDNF by Darren & Jayne Calder

FUNDRAISER | “Shine” performed by GDNFers and written by Vicky DIllon

EDITORIAL | Where Are We One Year On by Steve Ford, Parkinson UK

Follow me, Larry Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Follow Co-host and Producer Niki Reitmayer

Twitter: @Niki_Reitmayer

Thank you to my wife and partner in Parkinson’s Rebecca Gifford.

Also, thank you to the following contributors and guests.

Vicky Dillon

Darren & Jayne Calder

Steve Ford, Parkinson U.K.

Helen Matthews, Cure Parkinson’s Trust

BBC Radio 4

Passionate Productions for BBC

Our presenting partner is Parkinson Canada http://www.parkinson.ca/

The toll free hotline 1-800-565-3000

Follow them on Twitter @ParkinsonCanada

Find the new Parkinson Clinical Guideline www.parkinsonclinicalguideline.ca

Our content and promotional partners

Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation

Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust. 

WPC2022- Save the date for the sixth World Parkinson Congress, June 7 to 10, 2022 in Barcelona, Spain in 2022. The only inclusive scientific conference opens its doors to people with Parkinson’s and families

From prayers and real promise to being preyed upon, this is the real deal about stem cell therapy and Parkinson’s disease. In this episode we explore stem cell therapy for Parkinson’s disease.

The promise of stem cells is exciting and there's amazing research underway.

Later this year, the first U.S. human trials for stem cell therapy for Parkinson’s will begin in New York. This could open up a potential path for new treatments and Dr. Lorenz Studer has spent the last 22 years perfecting the treatment.

In 1998, in Studer’s lab, the neuroscientist and founder of the Center for Stem Cell Biology at Memorial Sloane Kettering discovered a successful technique to transform animal cells into dopamine cells. They could transplant them into the brain and measure positive impacts on motor symptoms of Parkinson’s disease in rat models.

Studer remembers it as an eureka moment, and it took from 1998 to 2011 for his team to discover the recipe for the human dopamine cells and they have now grown one billion of them. They are stored in vats filled with liquid nitrogen and have been safety tested hundreds of times.

Now, nearly ten years after perfecting the recipe, people with Parkinson’s will put these cells to the test and hopefully taste the sweet success of stem cell replacement therapy.

While Studer’s stem cell therapy is at least five years away, there are some companies claiming they can help Parkinson’s and other diseases with existing stem cell treatments. Science and Health journalist Laura Beil highlighted some of these organizations in her six part investigative podcast “Bad Batch” by Wondery.

The podcast explores a real life story of what happened when a bad batch of cells were distributed and injected into people in Texas. She empathizes with the victims, as she recalls she would’ve done anything to help her father who had Parkinson’s. 

Dr. Studer has also heard these stories and recommends you consult with a doctor before seeking any treatments. He cautions some companies looking to make a quick buck actually take fat cells out of the body and re-inject them into your body, while claiming they can cure your disease.

The only FDA approved stem cell treatment is for blood diseases.

Please comment by leaving us a voice message here: https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Follow me, Larry Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Follow Co-host and Producer Niki Reitmayer

Twitter: @Niki_Reitmayer

Thank you to my wife and partner in Parkinson’s Rebecca Gifford.

Also, thank you to the following contributors and guests.

Laura Biel, host of the Bad Batch podcast from Wondery

Brian Fiske, SVP of Research Programs at The Michael J. Fox Foundation

Lorenz Studer, MD Director of Center for Stem Cell Biology at Memorial Sloan Kettering

Our presenting partner is Parkinson Canada http://www.parkinson.ca/

The toll free hotline 1-800-565-3000

Follow them on Twitter @ParkinsonCanada

Find the new Parkinson Clinical Guideline www.parkinsonclinicalguideline.ca

Our content and promotional partners

Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation

Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust. 

WPC2022- Save the date for the sixth World Parkinson Congress, June 7 to 10, 2022 in Barcelona, Spain in 2022. The only inclusive scientific conference opens its doors to people with Parkinson’s and families.  

Links we mentioned and source material for the show:

Bad Batch podcast

Fox Trial Finder

International Society of Stem Cell Research

ClinicalTrials.gov

 ARTICLE: Canadian man growing nose cells on spine after stem cell treatment 20 years ago.

ARTICLE: Reprogrammed stem cells implanted into patient with Parkinson’s disease.ABSTRACT: 1998; Dr. Studer’s research on creating dopamine brain cells that help relieve Parkinson symptoms in rats. ABSTRACT: The 2011 report Dr. Studer and his team published on the recipe to make dopamine cells for humans.ABSTRACT: 2020 UPDATE on the Kyoto Stem Cell Project.  

VIDEO: (2:21) Dr. Alan Gaveck shares a testimonial claiming stem cell therapy helped a woman’s Parkinson’s disease.

This week on the podcast, we’re talking about writing as a life skill. Learning to access your own inherent creativity can be a powerful tool for any of us dealing with challenge and change. For folks with Parkinson’s in their lives, it can offer both physical and emotional benefits.

Science agrees! Studies and reputable sources tell us that writing and other forms of creative expression can reduce stress, help with sleep, improve cognition, improve your mood, help manage symptoms of depression, lower blood pressure, improve lung and liver functioning and decrease time spent in the hospital.

Beyond the more measurable benefits, I believe — because I’ve experienced it and seen it over and over — that learning to access that beautiful creative space we all have can bring balance and even peace when you’re feeling overwhelmed. It can help us change our relationship with Parkinson’s Disease, or any of life’s challenges, by giving us a safe and healthy place to express our feelings and thoughts, explore our inner life, find perspective and guide us toward a way to move through those dark times. Often, acknowledging what you’re experiencing by simply writing it down is a critical first step towards healing.

If we take it to the next level, there are even more benefits to be found. When we are courageous enough to share our expressions, we all benefit. Stories bind us. They reveal our shared humanity through humour, drama and vulnerability. Writing about our worst and best moments and everything in between can light the way and inspire others dealing with pain or adversity...which is all of us, really. Offering glimpses into our inner lives gives us in the Parkinson’s community an opportunity to support and strengthen each other.

However you choose, express yourself! If you feel compelled, share it with others. No matter what, it’s good for you and time well spent. Who knows? Writing those first few words can be a step on a new path towards greater wellness.

—-

This week’s show notes were contributed by Rebecca Gifford, writer, workshop facilitator, partner in Parkinson’s to this podcast’s creator and host Larry Gifford, and this episode’s co-host. Her memoir, Cancer Happens: Coming of Age with Cancer, was published by Capital Books in 2003. She currently offers her writing workshop for non-writers to people with Parkinson’s and their families through the Parkinson Society of British Columbia.

Feel free to comment by leaving us a voice message here: https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Follow me, Larry Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Follow Co-host and Producer Niki Reitmayer

Twitter: @Niki_Reitmayer

Thank you to our special co-host this week, Rebecca Gifford.

Also, thank you to the following contributors and guests.

David Sangster, follow his “micro-blogging” on twitter @1in37Parkinsonsand his videos on YouTube 

Sharon Krischer, follower her blog “Twitchy Woman”

Jonny Acheson, follow him on twitter @pdinfocus

Allan Cole, follow his blog “PD WISE”

Matt Eagles is the creator of ParkyLife

Ellen Bookman, follow her blog “Loving Living”

Heather Kennedy, follow her blog “Kathleen Kiddo”

Ava Butler, author of “Parkinson’s; A Love Story With Dementia For Dessert”

Steven Ward

Martino Costa

Christie Daniels

Additional Resources for Parkinson’s Writing:

The Michael J. Fox Foundation Blog “Fox Feed”and a list of additional books and resources

Parkinson’s Life “Eight must-read books about Parkinson’s.”

“Perserverance: The Seven Skills You Need to Survive, Thrive, and Accomplish More Than You Ever Imagined”by Tim Hague

Our presenting partner is Parkinson Canada http://www.parkinson.ca/

The toll free hotline 1-800-565-3000

Follow them on Twitter @ParkinsonCanada

Find the new Parkinson Clinical Guideline www.parkinsonclinicalguideline.ca

Thanks also to our content and promotional partners

Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation

Spotlight YOPD– The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust. 

Credits

Dila Velazquez – Story Producer

Rob Johnston – Sound Design

What are the different possible triggers for how people get Parkinson’s? Find out in this episode as I try to narrow down how the degenerative brain disorder was unleashed on me. After Niki and I chat about the “how,” my wife ,Rebecca and I begin to explore the “why?”

If you have Parkinson’s, you may want to play along at home while you listen. Here’s a handy check list to see what factors potentially triggered your onset of PD.

Check ALL that apply:

• I am male.
• I am older than 60 years old.
• I have parents or siblings who have Parkinson’s disease.
• Genetic tests show I carry a gene that is associated with the onset of Parkinson’s disease.
• Genetic tests show I carry a gene that is associated with brain degeneration.
• I play or played a high contact sport (Football, Hockey, Rugby, Boxing, Martial Arts)
• I have played or played high contact sports for more than eight years.
• I have experienced several concussions.
• I live or have lived near a major, busy road.
• I have worked or lived near a chemical plant.
• I have suffered Agent Orange exposure.
• I have been exposed, over a long period time or at extremely high levels to pesticides.
• I have been described as a workaholic, a Type-A personality, or stressed-out.
• I do not exercise.
• I have had a stroke.
• I have injected the MPTP strain of synthetic Heroin and suffered spontaneous Parkinson’s.
• I was born with damaged dopamine-producing brain cells.
• I died. During my autopsy, Alpha-Synuclein was discovered clumping in my brain (Lewy Bodies).

I did not realize how much I was asking myself, “What did I do to get Parkinson’s?” until I started putting together this episode. The recent study by Cedars-Sinai Hospital in California that we discuss at the end of the episode was a real revelation for me. It suggests that people with Young Onset Parkinson’s may be born with malfunctioning dopamine producing brain cells, which leads to the clumping of the protein Alpha-Synulcein (Lewy bodies) and ultimately leads to the onset of Parkinson’s disease.

In the episode, we hear from many qualified professionals about different reasons how Parkinson’s onsets. Sohini Dhowdhury, Deputy CEO of The Michael J. Fox Foundation, discusses why she is so interested in Alpha Synuclein research. “We know it’s the hallmark of Parkinson’s. Research and therapies targeting this protein gets to the root biological process,” Chowdhury said.  

At UCLA, Dr. Jeff Bronstein, the head of the movement disorder clinic there and Dr Beata Ritz, professor of epidemiology at Fielding School of Public Health, collaborate on environmental factors that could trigger the onset of PD, like pesticides, both for the home and industrial use. Dr. Ritz has little doubt when she speaks on this topic, “Some pesticides are neurotoxic in a way that causes Parkinson’s disease when you are exposed over a very long time or very high levels.” In the episode, we examine the herbicide Paraquat, which is banned in many countries around the world, yet remains one of the most widely used chemicals to protect crops.

There are many ways people can trigger Parkinson’s and many reasons why someone is diagnosed with it. Dr. Bronstein believes every case is unique, “I think of it as a humungous Venn diagram in which there and many, many different factors.”

In the end, how I got Parkinson’s may not matter to anyone else, but me. But, for me, I’d be more comfortable knowing it was hibernating within me until I was ready for it, instead of me doing something to unnaturally cause it. In reality, I’ll likely never know what combination of things unlocked this disease. On the flip side, it’s brought me as much joy, friendship, perspective, and purpose in life  – and maybe more – than any one thing in my life.

Feel free to comment by leaving us a voice message here: https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Follow me, Larry Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Follow Co-host and Producer Niki Reitmeyer

Twitter: @Niki_Reitmayer

Thank you to our special guests: 

Dr. Jeff Bronstein, Head of the Movement Disorder Clinic at UCLA

Dr. Beata Ritz, professor of Epidemiology at Fielding School of Public Health,

Dr. Malu Tansey, Director, Center for Translation Research in Neurodegenerative Disease

Dr. Matt Farrer, Program Director, Nuerology & Movement Disorders at University of Florida

Michael Brauer, professor, UBC school of population and public health

Sohini Chowdhury, Deputy CEO of The Michael J. Fox Foundation

Marty Gifford

Rebecca Gifford

The book referred to in the podcast was “The Case of the Frozen Addicts.”

Our presenting partner is Parkinson Canada http://www.parkinson.ca/

The toll free hotline 1-800-565-3000

Follow them on Twitter @ParkinsonCanada

Find the new Parkinson Clinical Guideline www.parkinsonclinicalguideline.ca

Thanks also to our content and promotional partners

Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation

Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust. 

In this episode of When Life Gives You Parkinson’s, I talk with filmmaker Zack Grant, the driving force behind the Parkinson’s documentary, “Shake with Me.” The thirty-minute film was originally intended to document how Parkinson’s impacted and inspired Zack’s mom, Debra Magid, to return to her fine art roots and begin to paint bold, colorful, big-eyed, portraits. It turned into an intimate, authentic time capsule, capturing moments and conversations as a family wrestles with a Parkinson’s diagnosis.

Debra was diagnosed in 2012. She decided to keep the Parkinson’s a secret from her kids. Debra explains her decision in the film, noting Zack was already out of the house, but his sister Elizabeth was still living at home. Debra said, “I was afraid if she thought I was sick that she wouldn’t even go to college. That she wouldn’t launch.”

About a year later, Elizabeth found her Mom’s medication hidden in a drawer and that secret was out. The other secret Debra was keeping was that the Parkinson’s was motivating her to paint again. As a college student, she was an aspiring product designer and had a passion for fine air. Her diagnosis triggered that passion again. “What I’ve been doing is drawing faces, interpreting what the face is, and what I see in it. Kinda of telling a bit of a story.” Debra continues, “I do feel lucky to have found such a strong voice this late in life. I think Parkinson’s is like a little bird sitting on your shoulder going, ‘tick-tock, tick-tock.’ Time is going and don’t waste what you have.”

After explaining the diagnosis to her family, it would be several more years until Debra was comfortable sharing the Parkinson’s diagnosis with everyone in her life and eventually everyone in the world through Zack’s film. “The film was supposed to be this very small piece about the juxtaposition of her art, her diagnosis and her changing health,” said Zack. At some point, he says the family realized it was much more than that, “There was this desire to have these conversations about how Parkinson’s has affected our family.” The film touches on advancing symptoms, decisions to take more and different drugs, the struggle of who to tell, when to tell them and how Parkinson’s impacts everyone in the family, not just the individual diagnosed.

Today, Zack, Debra and the family are more open and honest with each other, because of the experiences they shared in making film. For Zack, the film has refocused his career, “I think this film was a really ambitious way of trying to get in touch with my feelings around Parkinson’s. Now I am in this place artistically where I want to do more personal stories. And in fact, I don’t want to touch anything that I can’t find a personal way in to.”

The film “Shake with Me,” is available for small group screenings, film festivals and for free download on Vimeo. 

Feel free to comment by leaving us a voice message here: https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Follow me, Larry Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Follow Co-host and Producer Niki Reitmeyer

Twitter: @Niki_Reitmayer

Thank you to our special guests: 

Zack Grant, Debra’s son and filmmaker. This is the official website for shakewithmefilm.com

View his film “Shake with Me” for free on vimeo. Check out his other work at zackgrant dot com.

Debra Magid, for sharing her Parkinson’s story and her art. Check out her website www.DebraMagid.com .

Jim Grant, Debra’s husband

Elizabeth Grant, Debra’s Daughter

Our presenting partner is Parkinson Canada http://www.parkinson.ca/

The toll free hotline 1-800-565-3000

Follow them on Twitter @ParkinsonCanada

Find the new Parkinson Clinical Guideline www.parkinsonclinicalguideline.ca

Thanks also to our content and promotional partners

Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation

Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust. 

I will introduce you to Jeanette and Barry Pynn. They are friends of Rebecca and mine that just went through a gut-wrenching couple of years dealing with a misdiagnosis.

Jeanette was a runner for her whole life. After decades of raising kids, a great marriage, and dreams of traveling and enjoying the final decades of life together, Jeanette’s gait changed. “I couldn’t flatten my foot out during a run,” she says. Doctors treated her foot issues for years through orthotics and creams. Three years later, the whole left side of her body shutdown after jumping into the Adriatic Sea. Something was definitely wrong.

After months of tests, Jeanette received a diagnosis in the Parkinsonian family that she was not expecting: Multiple System Atrophy, also known as MSA. It carries similar symptoms to Parkinson’s but is more aggressive, has a quicker progression and is deadly. The Mayo Clinic reports people with MSA typically live seven to ten years after symptom onset. This is an important fact that Jeanette and Barry did not know and a vital detail that her neurologist failed to mention.

Barry remembers leaving the appointment somewhat encouraged, “When we heard that it might be a relative of Parkinson's, it was actually it was a relief.” 

That relief quickly gave way to fear, when Jeanette was waiting for her new prescriptions at Costco surfing the internet, “I was reading up on the disease and I looked over at Barry and I said, I don't think this is very good. And he said, In what way? And I said, I think you better read this because I can't I can't really explain it to you.”

After two years of wrestling with the diagnosis, the disease, and her own impending death, Jeanette and Barry reached out for help. They were in search of support, community, information, context and understanding. Rebecca and I met Barry in the Spring of 2019 at the annual meeting for the Parkinson Society of British Columbia. They were listeners to the podcast and had traveled from Bowen Island, because they read we would be at the event and they wanted to connect. We chatted, they shared their story, and soon we discovered we got along. We became fast friends. And in the back of our heads, we understood we were entering into a friendship with Jeanette, at least, was a proposition that wouldn’t likely survive the next decade.

Rebecca’s cell phone rang on a Saturday morning in September last year. It was Jeanette. She had seen a new neurologist, a movement disorder specialist, at the UBC Brain Centre. “She said that it's most likely certain that I have Parkinson's disease and not MSA.” Jeanette continued through tears, “Whoever thought they'd be so happy to have Parkinson’s?”

The misdiagnosis of MSA is certainly not rare. A 2015 study featured on Neurology.org examined 134 autopsied brains of people who were clinically diagnosed MSA while living and only 63% had the correct diagnosis at death.

As it relates to Parkinson’s disease, a new Parkinson’s UK study shows 25% of people with Parkinson’s are misdiagnosed. A third of those were given medication for an illness they didn’t have and a 10% underwent a needless operation or procedure.

Misdiagnosis is likely to continue until researchers discover reliable biomarkers to aid in the diagnosis of Parkinson’s and related disease.

Feel free to comment by leaving us a voice message here: https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Follow me, Larry Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Follow Co-host and Producer Niki Reitmeyer

Twitter: @Niki_Reitmayer

Thank you to our special guests: 

Jeanette Fisher Pynn

Barry Pynn

Wendy Edey, Facilitor of Hope at “Hope Studies Central” https://sites.google.com/a/ualberta.ca/hope-studies/home

Dr. Jonathon Squires at Djavad Mowafaghian Centre for Brain Health

Dr. Stuart Factor, Director of Movement Disorders Program at Emory University School of Medicine.

Rebeca Gifford

Our presenting partner is Parkinson Canada http://www.parkinson.ca/

The toll free hotline 1-800-565-3000

Follow them on Twitter @ParkinsonCanada

Find the new Parkinson Clinical Guideline www.parkinsonclinicalguideline.ca

Thanks also to our content and promotional partners

Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation

Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust. 

In this episode of When Life Gives You Parkinson’s, we explored the Parkinson’s legacy of Muhammad Ali. He was a boxer, a philanthropist, a Civil Rights leader, a dedicated Muslim and an advocate for Parkinson’s.

In retracing the onset of Ali’s Parkinson’s disease, it is evident he was aware, his doctor was aware and the public was aware that something was happening even as his boxing career was continuing on. The slowness, rigidity, and slurred speech all can be traced back to the mid-70s. Ali’s physician and corner man Dr. Ferdie Pacheco noticed the champ was slipping neurologically in 1977 and resigned after Ali, his wife and trainers ignored his concerns of brain damage which he warned could lead to Parkinson’s.

Looking back at Ali in the ring and on talk show interviews from that year through his diagnosis in 1984, you can hear his voice change and his movements slow down. This is how he described what it felt like to him on The Dick Cavett Show, “You see what you wanna do. I should really hit you. Right? And then, I throw one and it lands right there. I miss you. And you see punches coming and you can get away quick enough…”

In an interview with the When Life Gives You Parkinson’s podcast, Muhammad Ali’s daughter Rasheda Ali Walsh, shares that the journey for diagnosis for her Dad was not much different from most. “I was told that a lot of doctors misdiagnosed him because he was so young and a lot of people thought he was just kind of remnants from the boxing career,” she said. Ali’s first symptom was a tremor in his thumb, he started to move slower and then after that his voice softened and speech began to slur.

Rasheda says accepting the diagnosis also was not easy for her Dad, “My dad felt that everything happens for a reason and I know how cliche that may sound. But he was, of course, distraught when he was diagnosed.” Rasheda says he shied away from public speaking in the 80’s when his voice started to be impacted by the disease. “You know, his mouth was something that made him a lot of money and made him dynamic. And, you know, when he started to speak a little softer, he got a little insecure about speaking,” she said. Ali eventually accepted his diagnosis and his attitude went from insecure to realizing he need to grab a hold of it full force to see what he could do with it to help change the world.

There is something comforting to hear about the struggles Muhammad Ali had in acknowledging initial symptoms, getting diagnosed, accepting the diagnosis, figuring out who to tell and when tell them, and even wrestling with the concept of when to stop working. These are issues and decisions we all share with “The Greatest.” Either Ali was cut down to be seen as human or we all have been lifted up and are doing a whole lot better than we think.

Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Follow me, Larry Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Follow Co-host and Producer Niki Reitmeyer

Twitter: @Niki_Reitmayer

If you want more information on the studies around pugilistic Parkinson’s you can find the information in the Journal of Neuropathology and Experimental Neurology through an article titled “Lewy Body Pathology and Chronic Traumatic Encephalopathy Associated With Contact Sports

Thank you to…

NBC’s Tonight with Jack Parr  1963

BBC’s “Parkinson” with Michael Parkinson, 1978

BBC Documentary “One Punch Too Many”

David Letterman, World Wide Pants 1984

Phil Donahue, Multimedia Inc., 1990

Diane Sawyer, ABC News

NBC’s Today Show, NBC News, Matt Lauer and Savannah Guthrie

HBO Sports, “Inside Sports” and Bryant Gumble

And thank you to our special guests: 

Rasheda Ali Walsh – Rasheda is the Author of “I’ll hold your hand so you don’t fall,” It’s available on her website www.RashedaAli.net. She served as Honorary Chairperson for the Florida Coalition To Cure Parkinson’s Disease. She serves as Patron for the EPDA, the Muhammad Ali Parkinson’s Center at Barrow Neurological Institute, and serves as Advisory Board Member of BrainStorm Cell Therapeutics, a leading Biotech company.

Dave Clark, sports presenter on Sky Sports News

Our presenting partner is Parkinson Canada http://www.parkinson.ca/

The toll free hotline 1-800-565-3000

Or follow them on Twitter @ParkinsonCanada

Thanks also to our content and promotional partners

Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation

Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust. 

Credits

Dila Velazquez – Story Producer

Rob Johnston – Sound Design

Hey folks, its Larry. We need to chat. A few Thursday’s ago, I was sitting in my office having a meeting and suddenly my nose begins to bleed. Weird. I grab some tissues. I’ve had bloody noses before and they stop in a few minutes. This was a gusher and it wasn’t stopping. 40 minutes into the bloody nose we called 9-1-1. Medics came, put a plastic clamp on my nose and took me to St. Paul’s Hospital. After a few hours the bleeding stopped. The ER doc asked a few questions and sent me home.

I had 10 nose bleeds over the course of the next 4 days, but continued working through my packed schedule. I flew to Toronto for meetings the Monday after. I had three nose bleeds that day. Tuesday, during a meeting I had one and then as we were wrapping up dinner I had another. I had kept my nose clamp from the ambulance ride, so I was expert at dealing with it. At dinner, I said folks, “It’s time for me to leave. As you can see I have a stylish nose clamp, which means my nose is bleeding and it is time for me to catch an Uber.”

A colleague of mine, Mike, rode with me. We were at the same hotel. He said, “I’m right upstairs if you need me.” I said thanks and assured him I was fine. I wasn’t fine. 10 minutes later I send him an email no one wants to get, the subject line read, “Help 911.”

Within those 10 minutes, the blood had begun to gush out both nostrils through the clamp and I started to cough, choke and gag on it. I could hardly catch my breath. I dialed 9-1-1. After they confirmed an ambulance was on its way, I called my wife Rebecca in tears, choking on my on blood, in full panic attack mode I told her I loved her.

My colleague Mike arrived a minute later. Rebecca and Mike exchanged information. Mike kept her in the loop the whole night. He rode in the ambulance with me to St. Michael’s Hospital. Meanwhile, I’m still bleeding, still coughing up blood and spitting out big clots. It was gross. The doctor sprayed some anti-decongestion in my nostrils to help close the blood vessels. She then shoved a big wad of gauze up my nose with numbing and clotting medication. It took three or four hours for the bleeding to stop. I stayed in Toronto for two extra days, resting in a hotel, nursing my continuing bloody nose.

I emailed my neurologist who said; A) It’s not Parkinson’s related. B) It’s not Parkinson’s medication related. C) Get off the aspirin. At some point, I was told it was a good idea to take a low dose aspirin once a day to prevent stroke and heart attack. After seeing my GP, she said, “Yeah, were not recommending that anymore.” Getting off the aspirin and out of the sky was the key to controlling the nose bleeds. I had been on 13 roundtrip flights in 16 weeks. Too much recycled air will dry out your nose. The aspirin counter-acted the blood platelets clotting ability.

Both my GP and Neurologist have also suggested I need to slow down. So, I’m slowing down. I am peeling back commitments and travel. I’ll still do some, but not as much. I need to say no more, know my limits, and admit out loud that I can’t do everything. It starts with the podcast. Effective in December, we will release a new podcast every other week. We’ll take two weeks off at the end of the year and be back on January 8th.

Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Follow me, Larry Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Follow Co-host and Producer Niki Reitmeyer

Twitter: @Niki_Reitmayer

Thank you to…

Rebecca Gifford, my wife and partner in Parkinson’s  

Our presenting partner is Parkinson Canada http://www.parkinson.ca/

The toll free hotline 1-800-565-3000

Or follow them on Twitter @ParkinsonCanada

Thanks also to our content and promotional partners

Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation

Spotlight YOPD– The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust. 

Credits

Dila Velazquez – Story Producer

Rob Johnston – Sound Design

In this episode of When Life Gives You Parkinson’s, I put the old adage “laughter is the best medicine” to the test. I go through improvisational comedy training and perform live on stage for the first time in nearly thirty years. Plus, I connect with four people who live with Parkinson’s; Glenn Lurie, Kitty Fitton, Phil “Badger” Smith and Paul Mayhew-Archer. They all have turned to stand-up comedy after their PD diagnosis.

archer.com/">Paul Mayhew-Archer, star of the one-man show “Incurable Optimist,” admits he gets a pleasant dopamine rush on stage, but he says it’s not the same as medicine, “So, I mean, they say that laughter is the best medicine. And, you know, it's rubbish, because in my case Sinemet is the best medicine. But laughter is certainly pretty high up on the list.” Sinemet is the brand name of Carbidopa-Levodopa, the gold-standard treatment for Parkinson’s disease.

Aside from the dopamine hit, comedian Phil “Badger” Smith has discovered it helps with some specific symptoms of Parkinson’s, “Apart from anything else helps of practicing speech and confidence and helps to battle depression and anxiety. Because you're performing and if people are laughing at your jokes, it gives you a real buzz.”

I participated in a series of three workshops called “Improv for Parkinson’s” at Vancouver Theatre SportsImprov Comedy Institute, which concluded with a live performance. For me, performing on stage was such a rush, it triggered a bloody nose as soon as I stepped on stage and heard the applause and roar of the crowd. I had to excuse myself before introductions. I quickly shoved tissue up my nostril and clamped my nostrils shut and returned to the stage. After all, they show must go, but more importantly, improv training taught us to roll with the punches. With Parkinson’s, improv and life, the more you can be in the present moment and react to what is right in front of you, the easier it all becomes.

Improvisational comedy and Parkinson’s was the focus of journal.com/article/S1353-8020(16)30432-1/fulltext">a first-of-its-kind research projectat North Western University in 2017 in conjunction with the Second City School of Improvisation in Chicago. The results show that despite common amotivation and symptomatic apathy and unlike therapies and exercise classes, the improv workshops were well attended and enjoyed among patients of PD of varying ages and disease severity. In regards to measures of efficacy, the only variable that improved significantly was the change in UPDRS part II, which focuses on how difficult the activities of daily living are for people with Parkinson’s. Researchers believe this preliminary finding may be a result of the humor and games that aimed at improving communications skills, stigma, anxiety and quality of life. More research will need to be done before the positive impacts of improv on Parkinson’s are confirmed.

Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Follow me, Larry Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Follow Co-host and Producer Niki Reitmeyer

Twitter: @Niki_Reitmayer

Thank you to…

Vancouver TheatreSports Improv Comedy

Dan Dumsha Improv performer, instructorand executive coachhas a website www.dandumsha.comand can be found on Facebook @Dan.Dumsha, twitter@dandumshaand Instagram @dandumsha

Johnny Kerrigan is in the Vancouver TheatreSports rookie league.

My Improv Troupe

• Norm Blain
• Creston Froats
• Peter Jarvis
• Geoff Cohen
• Richard Froese
• John Hougan

Glenn Lurie is living in North Carolina. Here is a link to the articlethat first peaked my interest in Glenn. You can follow him on Facebook @Glennluriecomedianand twitter @GMLurie.

Kitty Fitton can be found at her website www.kittyfitton.comand you can follower her on twitter @kitty_fitton

Phil “Badger” Smith on twitter @phil_badger

Paul Mayhew-Archer has a website archer.com/">http://mayhew-archer.com/and is on twitter @mayhewarcher

Rebecca Gifford, my wife and partner in Parkinson’s, who always laughs at my jokes.

Our presenting partner is Parkinson Canada http://www.parkinson.ca/

The toll free hotline 1-800-565-3000

Or follow them on Twitter @ParkinsonCanada

Thanks also to our content and promotional partners

Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation

Spotlight YOPD– The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust. 

Credits

Dila Velazquez – Story Producer

Rob Johnston – Sound Design

In this episode, we discuss what it is like to a get a diagnosis of Parkinson’s in the prime of your life when you are happily married with four kids and had been anticipating a return to full time work after a tour of duty has a full time Mom.

On her website, www.kittyfitton.com , she says, “I am a comedian, Aviation fiend, Air-Scout leader, mother, wife, friend, and I have Parkinson’s Disease. It’s the last thing that’s the real kick in the guts, but also the thing that has helped to transform my life from humdrum to extraordinary.” What I like so much about Kitty is that she is real, authentic and vulnerable. I relate a lot to her story.

Kitty was diagnosed with Parkinson’s in early 2016. Originally, from North of England, Kitty and her husband Craig have been raising their four kids in New Zealand since 2011. When the diagnosis came, Kitty admits she cried for days. A visit from a Parkinson’s New Zealand associate gave her the information and inspiration she needed to move forward. Kitty admits though, she and Craig often say they like the taste of sand, because all too often they put their heads in the sand when it comes to the realities of Parkinson’s disease.

In the past year, if they are being honest with each other about the PD, Kitty and Craig have noticed changes. Her gait is more pronounced and she uses poles for tramping. They both also notice her face is a bit droopier and more masked than a year ago at this time.

Kitty remembers a time, pre-diagnosis; they used to sit out back, with a glass of wine, under the stars, planning grand tours of Europe. But, at some point that stopped dreaming about the future and now fear it or don’t discuss it at all. After all, when it comes to future planning, fears of disease progression can be paralyzing. In a recent conversation, Kitty says Craig lamented that because of the Parkinson’s they could not plan anymore. She argued, “I can still do stuff.” Admittedly, she is slower, but she still dreams, still plans and still has a lot of living to do.

That being said, Kitty does fear the days when she will need more assistance, “I’m terrified of losing cognitive ability and of not being independent.” However, she has warned her husband about one thing, “If you ever tell someone you are my carer in public, I will punch you.” 

These honest, tearful and hysterical moments of conversation between spouses, exchanging fears and assumptions, are happening with couples and families dealing with Parkinson’s around the world. I thank Kitty sharing her story and for giving us a peek inside her family life. No matter how different our journeys may be, the conversations couples and families have through tears and fears is universal and makes us all feel a bit more normal when we realize we aren’t the only ones who stopped dreaming about vacations or who’ve come to the conclusion that denial tastes a lot like sand.

If you have a comment or question about the podcast, you can email usparkinsonspod@curiouscast.ca

We invite you to add your voice to the show and leave a message for us here;https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Follow me, Larry Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Follow Co-host and Producer Niki Reitmayer

Twitter: @Niki_Reitmayer

Special thanks to… 

Niki Reitmayer for picking up the slack, while I recover from some random non-PD health stuff.

Kitty Fitton. Follow her on twitter @kitty_fitton, or go to her website https://www.kittyfitton.com/

The book from Parkinson’s New Zealand that Kitty referenced is available as a PDF download on the web. Just click here “Guide to Newly Diagnosed.”

For more info on our presenting partner Parkinson Canada head to http://www.parkinson.ca/Toll Free Hotline 1-800-565-3000 or follow them on Twitter @ParkinsonCanada

Thanks also to our content and promotional partners

Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation

Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease. 

This podcast and these show notes talk about suicide. If you are thinking about taking your own life or are worried about a friend or a loved one, call your suicide prevention hotline. It is available 24 hours a day, seven days a week in Canada. Call 1-833-456-4566. In the United States, it's 1-800-273-8255. Please ask for help. Reach out and talk to somebody. Your life is worth living.

A full list of suicide hotlines from around the world can be found here.

This is a special bonus episode of the When Life Gives You Parkinson’s podcast called “Extra Dosage.” Full episodes of Season 2 are available every other Wednesday.

On Monday, August 11, 2014 Robin Williams died by suicide. While he had has demons in drugs, alcohol and depression over the years, those are what killed him. Williams, diagnosed with Parkinson’s disease in May of 2014, was suffering from severe symptoms that would later be determined to be from Lewy Body Disease.

In this Extra Dosage episode of When Life Gives You Parkinson’s we discuss the life and death of Robin Williams. We discuss his roles, friends, diagnosis, symptoms, decline, suicide, and the impact he’s had on all of us.

His final year is details in a REELZ documentary in the U.S. called “When the Laughter Stops: Robin Williams.” Award winning Entertainment Reporter and the films Executive Producer, Dylan Thomas, is interviewed in this Extra Dosage episode of When Life Gives You Parkinson’s. We talked about how Robin created a mask so realistic no one knew he was suffering. “We never saw it. It wasn't in front of our eyes. And that's the great irony of the situation. Someone could achieve so much. He was a winner of an Academy Award, six Golden Globes, two Emmys, five Grammys, more than perhaps anyone could have ever imagined in a career. Yet at the same time, behind the scenes, there were issues in his private life that we didn't really know about. And that was, you know, his health condition, the fact that he had Parkinson's and that he had Lewy body syndrome.”

His widow, Susan Schneider Williams, penned a letter to Nuerology.org titled “The Terrorist Inside My Husband’s Brain.” In it, she details some of the darkness Robin was facing. “Robin was growing weary. The parkinsonian mask was ever present and his voice was weakened. His left hand tremor was continuous now and he had a slow, shuffling gait. He hated that he could not find the words he wanted in conversations. He would thrash at night and still had terrible insomnia. At times, he would find himself stuck in a frozen stance, unable to move, and frustrated when he came out of it. He was beginning to have trouble with visual and spatial abilities in the way of judging distance and depth. His loss of basic reasoning just added to his growing confusion.”

No one can bring Robin back. But his films and specials live on and make us laugh so hard it feels like exercise. That’s probably Robin’s last poke at Parkinson’s. Even in death, he produces as much natural dopamine in brains with and without Parkinson’s than anyone or anything else.

If you are thinking about taking your own life or are worried about a friend or a loved one, call your suicide prevention hotline. It is available 24 hours a day, seven days a week in Canada. Call 1-833-456-4566. In the United States, it's 1-800-273-8255. Please ask for help. Reach out and talk to somebody. Your life is worth living.

A full list of suicide hotlines from around the world can be found here.

If you have a comment or question about the podcast, you can email us: parkinsonspod@curiouscast.ca

We invite you to add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Follow me, Larry Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Follow Co-host and Producer Niki Reitmayer

Twitter: @Niki_Reitmayer

Special thanks to…

Paul Mayhew Archer, writer & producer archer.com/">http://mayhew-archer.com/

Neurology.org – Read Susan Schneider Williams full letter “The Terrorist Inside My Husband’s Brain.”

https://n.neurology.org/content/87/13/1308.full

Dylan Howard, American Media

REELZ Channel

CBS News, NBC News, ABC News, CNN, Fox News

CBS This Morning

For more info on our presenting partner Parkinson Canada head to http://www.parkinson.ca/ Toll Free Hotline 1-800-565-3000 or follow them on Twitter @ParkinsonCanada

Thanks also to our content and promotional partners

Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation

Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease. 

In this episode of When Life Gives You Parkinson’s, Larry Gifford talks with three friends with Parkinson’s who set out to test the physical, mental, emotional, and spiritual limits of the human body after diagnosis. What they discovered was that challenges in life, no matter how extreme, are easier and more rewarding when you build a community of support around you and allow yourself to be vulnerable enough to ask for help.

For many people with Young Onset Parkinson’s Disease (YOPD), the Parkinson’s journey can start as a lonely, aimless, hopeless, and dark ride. It takes time to begin to see the light. 

A year after his diagnosis in 2011, Tim Hague, then 45, applied for the first season of Amazing Race Canada with his son and won. His life and advocacy since then is quite an unsolvable dichotomy for Tim,“Parkinson's has given me far more than it's taken,” Hague says. “I mean, Parkinson's gave me the Amazing Race, The Amazing Race gave us a huge financial payout in winning it, right? It was in winning the race that threw open the door to speaking and that threw open the door to writing a book. And I mean, Parkinson's has been a massive blessing in our life. And that's really difficult to wrap your head around because I hate Parkinson's. I hate it with a passion. There's not been a single day I've ever woke up and thought I was happy to have Parkinson's.” Tim is the founder of U-Turn Parkinson’s, a Canadian charity with a mission to empower people living with Parkinson’s in their pursuit of wellness.

Jimmy Choi was 27 when he was diagnosed. He spent eight years denying his Parkinson’s, before he began to take it seriously. He started with a walk around the block. That turned into a jog, a run and eventually he ran a 5K. In the 8 years that followed, he has competed in over 100 half-marathons, 15 marathons, an ultramarathon and raised over $250,000 for Parkinson’s research. His advocacy hit new heights when he appeared twice on the NBC TV show American Ninja Warrior. The further he gets along on his journey, the more realizes he is not alone, “I think for a person with Parkinson's, it all starts with being open, accepting, really comfortable telling their story and not afraid to ask for help. You know, don't be that stubborn person. Don't be Superman.”

Bret Parker, 54, is the Executive Director of the New York Bar Association. He’s also known as the guy with Parkinson’s who ran seven marathons on seven continents, in seven days. “You know, it really, really was tough. I mean, it was really tough at times.” Parker painfully remembers struggle to finish the races. However, he did have an epiphany through it all, “I also realized that there's a point when relying on people is okay. I'm a very independent person. All of these events that I've done have been a part of: individual races and individual activities. You know, I'm not much of a team sports player, but it's okay to have people supporting you and cheering you on and leaning on them.” Parker’s personal mantra is “Do epic shit!” And he does. Each year, he raises money for Parkinson’s research by competing in extreme physical activities from skydiving and triathons to 100 mile bike rides in severe conditions. He’s personally raised more than $500,000 for the Michael J Fox Foundation.

Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Follow me, Larry Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Follow Co-host and Producer Niki Reitmeyer

Twitter: @Niki_Reitmayer

Thank you to…

Tim Hague can be found at www.TimSr.ca and on Facebook, Twitter and Instagram, he is @timhaguesr. He is also the founder of U-Turn Parkinson’s charity based in Winnipeg, Manitoba in Canada. 

Sheryl Hague, Tim’s amazing wife and partner in Parkinson’s.

Jimmy Choi is on The Michael J. Fox Foundation for Parkinson’s Research Patient Council. Follow him on Twitter @JCThr33, check out his Facebook page or follow him in Instagram @JCFoxNinja.

Bret Parker is the Co-Chair of The Michael J. Fox Foundation for Parkinson’s Research Patient Council. He’s @bretparker on Twitter. ,

Rebecca Gifford, my amazing wife and partner in Parkinson’s.

Our presenting partner is Parkinson Canada http://www.parkinson.ca/

The toll free hotline 1-800-565-3000

Or follow them on Twitter @ParkinsonCanada

Thanks also to our content and promotional partners

Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation

Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust. 

This is a special bonus episode of the When Life Gives You Parkinson’s podcast called “Extra Dosage.” Full episodes of Season 2 are available every other Wednesday.

In this episode of When Life Gives You Parkinson’s I visit Jillian Carson, 59, at her new Parkinson’s Wellness Centre in Victoria, British Columbia.

It’s a dream that I thought would never happen.” Carson, a retired physiotherapist and nine-years into her Parkinson’s diagnosis, knows how important the centre is for people, “Everyone deserves to have the care they need. I see it now. I watch them come from their classes. They are smiling, sweating and there is lots of laughter. It’s beautiful.”

The door into the centre reads “Jillian’s Gym” and there is no doubt she is the queen bee of this hive of activity. The centre is buzzing with people: coaches, volunteers and dozens of people with Parkinson’s. They take turns with heavy bags, speed bags, and other boxing equipment, stepping through giant tires, riding exercise bikes, stretching, jumping and running. While there, Jillian challenged me to a “yellie” competition. We both got down on all fours and counted by two as loud as we could. Our voices propelled a small toy forward and we followed behind racing against each other to see who’s “yellie” would cross the finish line first. That exercise worked on our cognitive skills, vocal expression and physical ability. And we laughed and laughed and laughed. 

Jillian preaches the importance of having a lot of support for your PD journey, “With Parkinson’s you need a life raft. Not one person, but at least eight. Because, if one of them is not available you need someone else. Your life raft needs to be full.”

The centre, which opened in September 2019, is a life raft for an entire community of people with Parkinson’s and it’s staying afloat thanks in a large part to a $500,000 anonymous donation. Visitors to the centre do not have to pay to take part. Donations, however, are accepted.

Jillian is hopeful Parkinson’s Wellness Project becomes as much of a place of support as it is for exercise. She remembers the dark days in her own life after her diagnosis just three weeks before her 50th birthday. “It was hard. I was in denial for those years. What really changed it was really meeting everyone else at World Parkinson Congress. You look around see all these people living well with Parkinson’s, they’re laughing and I thought, I can do that too.”

Despite the progression of Parkinson’s, which has affected her ability to cook and is causing more falls, she is full of energy and positivity. The secret is she benefits from seeing so many people benefit from the centre as they do using it.

If you have a comment or question about the podcast, you can email us: parkinsonspod@curiouscast.ca

We invite you to add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Follow me, Larry Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Follow Co-host and Producer Niki Reitmayer

Twitter: @Niki_Reitmayer

Special thanks to…

Jillian Carson, founder of Parkinson’s Wellness Project https://parkinsonwellnessproject.org/ Visit Parkinson Wellness Project at 202-2680 Blanshard Street, Victoria BC V8T 5E1 (250) 360-6800 To support the centre, donate here https://support.parkinsonwellnessproject.org/

For more info on our presenting partner Parkinson Canada head to http://www.parkinson.ca/

The toll free hotline 1-800-565-3000

Or follow them on Twitter @ParkinsonCanada

Thanks also to our content and promotional partners

Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation

Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease. 

Credits

Dila Velazquez – Story Producer

Rob Johnston – Senior Audio Producer

In this episode of When Life Gives You Parkinson’s I talk with three friends about Deep Brain Stimulation. Becca Miller is contemplating it, David Sangster just had it and Jim Smerdon had it five years ago.

“You hear everything,” said Jim Smerdon of Vancouver, B.C. when I asked what he heard when doctors drilled a hole through his skull and into his brain. “It was the clearest memory I’ve ever had of anything of my life.”

Jim was awake for the first five hours of Deep Brain Stimulation to treat his Parkinson’s disease.

My neurologist told my wife and I that if my motor symptoms and dyskinesia from carbidopa-levodopa do not level off in six months, we will add my name to the DBS evaluation list. The wait time for evaluation in British Columbia is three years and currently there is just one doctor who performs surgery here.

“Deep Brain Stimulation is considered the most commonly performed surgical treatment for Parkinson’s disease,” said Jamie Hamilton, senior associate director of research programs for the Michael J Fox Foundation. Hamilton explains that DBS is an invasive procedure which implants electrodes deep in the brain. The electrodes are controlled by a neurostimulator which is surgically implanted into his chest and sends electric impulses to specific targets in the brain.

Becca is a single mom of a 7-year old. She is scared to have DBS while her daughter is so young. But, she understands the benefits, “…that sounds just amazing. It feels like in some ways, you know, in some ways it's like a last resort and in other ways it feels like a reset. And a gift of time.”  

For David, it has been life changing. He’s back to playing with his kids, being an equal partner to his wife and playing piano. “It’s amazing,” says David. “I can be there when my kids need me - every time. (I can) take them to school, drive the car, and make them cereal. It’s also being there for my wife and being more of a person than I used to be.”

Jim was able to completely come off the carbidopa-levodopa for a year. But, his wife Deana Grinnell says he’s back up to 8 or 9 pills per day. That’s fewer than the 20 or so he was on prior to surgery by the dyskinesia is back. “His disease is progressing,” Deana said. “It’s effecting his balance. His speech is getting softer. It’s just marching on.”

Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Follow me, Larry Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Follow Co-host and Producer Niki Reitmeyer

Twitter: @Niki_Reitmayer

Thank you to…

Becca Miller

Jim Smerdon and Deana Grinnell

David and Jane Sangster

Jamie Hamilton, Senior Associate Director of research programs for the Michael J. Fox Foundation www.michaeljfox.org

Rebecca Gifford, my amazing wife.

Henry Gifford, Captain Awesome (Our son).

Our presenting partner Parkinson Canada offers more information on DBS and advanced srugerycal therapies for Parkinson’s here https://www.parkinson.ca/event/advanced-surgical-therapies-dbs-and-duodopa/ or  head to http://www.parkinson.ca/

The toll free hotline 1-800-565-3000

Or follow them on Twitter

Parkinson Canada           @ParkinsonCanada

Thanks also to our content and promotional partners

Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation

Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust. 

This is a special bonus episode of the When Life Gives You Parkinson’s podcast which we are calling “Extra Dosage.” Full episodes of Season 2 are available every other Wednesday.

Every six months, I visit Dr. Jonathon Squires at UBC’s Djavad Mowafaghian Centre for Brain Health. He is my neurologist and movement disorder specialist. Last week, my wife Rebecca and I sat down with him after our examination and interviewed him for the podcast. We talk about my symptom progression, my medicine regiment, DBS, biomarkers, what a cure will likely look like, stem cells, and the role stress might play in disease progression and symptom management.

Even though my motor symptoms are beginning to appear on both my right and left side, in general the tremor and gate issues are stabilized year over year. I am however collecting non-motor symptoms with gusto including exhaustion, anxiety, active dreaming, insomnia, hot flashes, excessive sweating, constipation and bladder urgency. I regularly have difficulty recalling proper nouns and names or short-term instructions, weekend plans, etc. Rebecca noted to Dr. Squires that when I’m “off,” I often will be in a zone or bubble completely unaware of what’s happening around me and not hearing what she says. I am also dealing with neuropathy, dystonia and dyskinesia.

In an effort to tackle a few of the more annoying symptoms, Dr. Squires increased my carbidopa-levodopa again. I am now taking five times a day, every four hours, with an optional sixth time in the middle of the night. He also added a sedative, an anti-depressant, a laxative, and Vitamin B Complex. All in – vitamins, supplements, medications and probiotics, I am swallowing more than 200 pills and capsules a week. The good news is medicine works and allows me to be a husband and ad, work, advocate and live life. 

Due to the increased meds and dyskinesia, we begin to talk about deep brain stimulation (DBS) with Dr. Squires, what the time line is for me before needing DBS, and what risks I may have.

If you have a comment or question about the podcast, you can email us: parkinsonspod@curiouscast.ca

We invite you to add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Follow me, Larry Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Follow Co-host and Producer Niki Reitmayer

Twitter: @Niki_Reitmayer

Special thanks to…

Dr. Jonathon Squires, Movement Disorder Specialist, Djavad Mowafaghian Centre for Brain Health at University of British Columbia

Rebecca Gifford, my wife.

For more info on our presenting partner Parkinson Canada head to http://www.parkinson.ca/

The toll free hotline 1-800-565-3000

Or follow them on Twitter @ParkinsonCanada

Thanks also to our content and promotional partners

Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation

Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease. 

When Joy was 16-years old, she fell in love with Leslie. Back then, he smelled good. “He had a wonderful male musk smell,” she says. Dr. and Mrs. Leslie and Joy Milne were later married. Les became a consultant anesthetist and she was a nurse practitioner.

Sixteen years later, his body odor changed – for the worse. He smelled off, overly musky and unpleasant. Joy even nudged him to wash more. Twelve years after that, he was diagnosed with Parkinson’s disease. At their first support group meeting, Joy realized the other people with PD smelled just like Les.

Bravely, Joy asked researcher Tilo Kunath why no one had researched the smell of Parkinson’s. Tilo was shocked. He had never heard anyone talk about an odor of the disease. Neither had anyone else.

Six months after that encounter, a colleague told Tilo that many cancers have smells, which made him think Joy maybe on to something.

Tilo teamed up with Perdita Barran, a professor of mass spectrometry at the University of Manchester, and started to test Joy’s super smeller. They discovered she was smelling sebum, an oily secretion on everyone’s skin that is over-produced in people with Parkinson’s disease. Next, they focused on the molecules within the sebum. “We found, if we compared the samples from people with Parkinson’s with the people without, there were significant differences.” Barren says they found 17 compounds that were different, “Of those, four were significantly different and they always varied in the same way.” Barren and Kunath used that information to create a model which allows them to test anyone’s sebum at any time and predict, with 90% accuracy, if that person has Parkinson’s.

The novelty of “The woman who smells Parkinson’s” initially brought ridicule and doubt from others in the scientific community, but as more and more research is being conducted, supporters are coming out of the closet. Joy feels some vindication, but knows there’s more work to be done on convincing the medical community that diseases have distinct odors. “How do elephants in a tribe know an elephant is ill and they protect it? How does a wolf know who is in the pack and is ill? Animals smell when they are ill. Sharks do as well. They have a super sense of smell. We are sentient beings. So why are we not accepting of it?”

There currently are no biological tests or measurable indicators for Parkinson’s disease. Diagnosis of PD is a subjective call by a neurologist based on medical history, symptoms, a physical examination and neurological tests. It is imperfect at best. The research around the smell of Parkinson’s is an exciting and promising approach to finding that elusive biomarker. Additionally, testing sebum levels is quick, easy, cheap and painless making it a great option for monitoring disease progression and medication effectiveness, especially for people in rural areas who rarely see their neurologist.

Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Follow me, Larry Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Follow Co-host and Producer Niki Reitmeyer

Twitter: @Niki_Reitmayer

Thank you to…

Joy Milne, Super Smeller. On twitter she’s https://twitter.com/stumpw0rk50

Tilo Kunath, reader in regenerative Neurobiology, Centre for Regenerative Medicine. Follow Tilo’s lab on Twitter https://twitter.com/KunathLab. Follow the Centre for Regenerative Medicine on twitter https://twitter.com/crm_edinburgh  

Perdita Barran, a professor of mass spectrometry at the University of Manchester. Watch her TedX Palo Alto talk here.  Follow her on twitter https://twitter.com/perditab

APOPO, discover the miracle of hero rats here: https://www.apopo.org/en

Watch Founder of APOPO, Bart Weetjens give his Ted Talk here https://www.ted.com/talks/bart_weetjens_how_i_taught_rats_to_sniff_out_land_mines?language=en

Rebecca Gifford, my amazing wife.

Henry Gifford, Captain Awesome (Our son).

For more info on our presenting partner Parkinson Canada head to http://www.parkinson.ca/

The toll free hotline 1-800-565-3000

Or follow them on Twitter

Parkinson Canada           @ParkinsonCanada

Thanks also to our content and promotional partners

Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation

Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust. 

This is a special bonus episode of the When Life Gives You Parkinson’s podcast which we are calling “Extra Dosage.” Full episodes of Season 2 are available every other Wednesday.

At the first in a series of events called “Parkinson’s IQ + You” presented by The Michael J. Fox Foundation, hundreds of people gathered in Atlanta to learn how to take control of their health care, build their care team and advocate for themselves. Additionally, leading scientists, researchers and neurologists shared the latest information on exciting research being conducted for Parkinson’s disease.

Dr. Malu Tansey , professor of Neuro science and neurology at the University of Florida, helped to explain the role stress plays in Parkinson’s. “Stress is a bad player. Stress tends to immunosuppress you. Stress tends to create a situation in your body where all the normal pathways in your body are basically slowing down and they become sluggish. We think even removal of alpha-synuclein and other toxic species from your brain is critical, and stress really dampens those down.”

Dr. David Standaert, chair of neurology at university of Alabama at Birmingham, is excited about all the research going into stopping Parkinson’s in its tracks.

“Most of my patients, and I’ve asked them this question, ‘If I could tell you that I can’t fix your problems, but they won’t get any worse would you by happy?’ and they’d all be happy with that.” Staneard says there are a number of different ideas out there including treatments around synuclein. There are a couple of big clinical trials using antibodies to remove alpha synuclein from the brain. He’s not certain whether it will work or not, but we are going to find out because those trials are underway. 

If you live in the United States, The Michael J. Fox Foundation’s “Parkinson’s IQ + You”, I hope to see you soon! These daylong, educational and empowering events for people with Parkinson’s and their care partners are free. See the full schedule and register for free here.

Saturday, December 14, 2019, Anaheim, California.

Saturday, January 11, 2019, Phoenix, Arizona.

Other sites recently announced include South Florida, Chicago, Oakland, and Houston.

If you have a comment or question about the podcast, you can email us: parkinsonspod@curiouscast.ca

We invite you to add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Follow me, Larry Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Follow Co-host and Producer Niki Reitmayer

Twitter: @Niki_Reitmayer

 Special thanks to…

Todd Sherrer, CEO of the Michael J. Fox Foundation.                           

Dr. Malu Tansey, professor of Neuro science and neurology at the University of Florida

Dr. David Standaert, chair of neurology at university of Alabama at Birmingham

Michael Fitts, Michael J Fox Patient Council

Dr. Stuart Factor, movement disorder specialist, professor of neurology at Emory University and program director at movement disorders

Drew Burke, Person with Parkinson’s

Elaine Bookman, Person with Parkinson’s. Follow her blog.  

For more info on our presenting partner Parkinson Canada head to http://www.parkinson.ca/

The toll free hotline 1-800-565-3000

Or follow them on Twitter @ParkinsonCanada

Thanks also to our content and promotional partners

Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation

Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease. 

Guest writer Rebecca Gifford, the wife of Larry Gifford

In this episode of When Life Gives You Parkinson’s, Larry and I explore how we keep the magic alive in the bedroom and beyond when there is always an elephant (a.k.a Parkinson’s disease) in there with us eating peanuts and taking up a lot of space.

Your bed. It’s your private space. It’s restful, probably even peaceful sometimes, and hopefully happy. It can be a safe place to feel and even grieve. If you’re fortunate enough to have someone to share it with, it’s a place for communication, intimacy and excitement.Larry and I have our most important conversations in bed. Since he was diagnosed with Parkinson’s these conversations happen regularly. We talk, share triumphs of the day — sometimes big successes and sometimes simply a hilarious moment with our son. We complain, cry, say things we probably shouldn’t, unconsciously avoid saying some things we probably should. Sometimes we have sex (but we’ll talk about that a lot more in this week’s podcast).And we sleep.All the things that happen in our bed are the most important things for our relationship, and for our well-being. It makes sense to pay attention to it.

That’s why Larry and I sought advice from nurse and sex health educator, Maureen McGrath.

“This is new for you, Parkinson’s disease, and it is different for every patient,” she said.

McGrath told us 70% to 80% of the couples she counsels are also dealing with medical conditions that impact intimacy in their relationship. We had a lot of questions.

Do we have a bedroom that is conducive to sleep and wellness?

“Sleep is critical.” McGrath said, “Make sure you don’t have a television in your room, or an iPad or bring a phone to bed. Dedicate your room to sleeping and/or sex.”

Have we created a space that is as safe and nurturing as it was before Parkinsons entered our life?

McGrath suggested, “Make your room an oasis.” We made plans to use our aromatherapy diffuser more frequently and make sure our bed is plush and comfortable for us both. Be sure to listen to snippets from our bed shopping excursion.Are we still affectionate with each other, even though nothing is as effortless as it used to be?

“You have a need to be close, you have sexual desire, but you may have a little bit of fear around it,” she said. McGrath recommended not overthinking it, returning to what you know and making it a priority appointment in our life.By acknowledging Parkinson’s has changed how we sleep, connect, and show affection for each other, we are learning to look the PD elephant in the eye, smile at it and thrive on all levels. Including in bed.

Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Follow me, Larry Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Follow Co-host and Producer Niki Reitmeyer

Twitter: @Niki_Reitmayer

Thank you to…

Deana Grinnell

Maureen McGrath, Nurse and Sexual Health Educator. Her website is backtothebedroom.ca. Follow her on twitter @back2thebedroom. Check out her Ted X Stanley Park talk “No Sex Marriage – Masturbation, Loneliness, Cheating and Shame” Gila Bronner, founder and former Director of the Sex Therapy Service at Sheba Medical Center in Israel

Rebecca Gifford, my amazing wife.

Henry Gifford, Captain Awesome (Our son).

For more info on our presenting partner Parkinson Canada head to http://www.parkinson.ca/

The toll free hotline 1-800-565-3000

Or follow them on Twitter

Parkinson Canada           @ParkinsonCanada

Thanks also to our content and promotional partners

Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation

Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust. 

After my diagnosis with Parkinson’s disease, my first call was to the Parkinson Society of British Columbia. They were quick to offer information on support groups and mailed a packet of brochures, handouts and relevant information that immediately made me feel less anxious and more informed. That is why each year my family raises money and walks in the Parkinson SuperWalk in Vancouver. This year we had a team of 12 walkers on our “When Life Gives You Parkinson’s” team and my 10-year-old son Henry went door to door in our neighbourhood to help raise funds. His efforts contributed $160 to our team.

In 1990, a small group of volunteers in Toronto decided to walk up Yonge Street to raise awareness for Parkinson’s disease and they called it “SuperWalk” due to the long distance. This year, Parkinson Canada held more than 82 SuperWalks across Canada with 10,000 participants and exceeded its goal of raising more than $2.4 million. While that seems like a great amount of funding, Jon Collins, Associate Director of Events and Partnerships for Parkinson Canada says, “The reality is, with 25 Canadians diagnosed every day, with our population aging, and (the number of people with) Parkinson’s expected to double by 2031, we are anticipating growing needs.”

Organizations like Parkinson Canada are privately funding, there are no government dollars, and they rely on individual donations to maintain their programs and advocacy. 

Parkinson’s IQ + You

I want to thank the great people in Atlanta for their hospitality as the Michael J. Fox Foundation’s “Parkinson’s IQ + You” blew through town earlier this month. Each event will be highlighted in upcoming Extra Dosage episodes. If you live in the United States, I hope to see you soon! These daylong, educational and empowering events for people with Parkinson’s and their care partners are free. See the full schedule and register for free here.

Saturday, December 14, 2019, Anaheim, California.

Saturday, January 11, 2019, Phoenix, Arizona.

Other sites recently announced include South Florida, Chicago, Oakland, and Houston.

If you have a comment or question about the podcast, you can email us: parkinsonspod@curiouscast.ca

 We invite you to add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Follow me, Larry Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Follow Co-host and Producer Niki Reitmayer

Twitter: @Niki_Reitmayer

Special thanks to…

Andrew Davenport, Chairman of the Board of the Parkinson Society of British Columbia

Caroline Wiggins, Education & Support Services Senior Coordinator for Parkinson Society of British Columbia

Jon Collins, Associate Director, Events and Partnerships , Parkinson Canada

Henry Gifford

Our generous neighbours

and my loving wife Rebecca Gifford

For more info on our presenting partner Parkinson Canada head to http://www.parkinson.ca/

The toll free hotline 1-800-565-3000

Or follow them on Twitter @ParkinsonCanada

Thanks also to our content and promotional partners

Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation

Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease. 

Around the world there continues to be a worldwide cry for help in the Parkinson’s community. Since October 2018, there has been a global shortage of SINEMET®®®. This is the brand name version of levodopa-carbidopa, the gold-standard drug, used to treat Parkinson’s disease, which Merck packages and sells. It started with a supply shortage, which lead to a third-party manufacturer change. Anytime you change production of pharmaceuticals, the manufacturer has to re-ratify the entire production cycle. Merck now says SINEMET®IR®, Instant Release, will not be available until July 2020 and production has ceased altogether on the continuous release versions including SINEMET®CR 100/25 and 200/50.

In this episode of the podcast, I talk to folks around the world who were taking SINEMET®to great effect only for it to be unavailable one day and replaced by a less effective, generic version of the drug.

The U.S. Food and Drug Administration first approved SINEMET® in 1975. Nothing in the last 44-years comes as close to normalizing the lives of people with Parkinson’s as it does.

David Ashford Jones was diagnosed with Parkinson’s at 40 years of age after more than a decade in marketing and sales for pharmaceutical companies. He says people with Parkinson’s easily notice the difference between the brand name version of SINEMET® and the generic. The difference between SINEMET® and the generic versions is not in the active ingredients, but in the absorption rate of the levodopa into the body in order to have an active effect on Parkinson’s symptoms. 

He offers this advice to other people with Parkinson’s, “If you can get a consistent version (of a generic), that minimizes the potential for that swapping of levels.” The goal for maximum effectiveness of any form of levodopa-carbidopa is to keep the gaps between peaks and valleys of levodopa in your body to a minimum.

Merck has stated that there is not a shortage of levodopa-carbidopa in Canada, because 90% of the people with Parkinson’s are on generic versions. Worldwide, others have estimated 80% of people are on a generic, but Merck did not address the global supply even when requested. The reality is 10-20% of the people with Parkinson is who are taking SINEMET® amounts to somewhere between 700,000 and two million people worldwide. After Merck ceased production, it appears the generic drug suppliers could not ramp up production to meet the expanded hole in the market. 

Merck agreed to offer written responses to some of the questions from When Life Gives You Parkinson’s,

WLGYP: Why is there a shortage [of SINEMET®]? Why couldn’t it be anticipated?

MERCK: (...) It is important to note that there are no current shortages of either formulations of carbidopa-levodopa in Canada as various generic manufacturers have made them available to Canadian patients. Currently, approximately 90% of the market of levodopa-carbidopa in Canada is supplied by generic formulations. (Source: IQVIA: CompuScript June DM, 2019)

Based on current demand, depletion of the current inventory of SINEMET®CR 100/25 MG is expected in September 2019. SINEMET®CR 200/50 MG is no longer available.

Despite the availability of generic alternatives in Canada, Merck understands that the situation may be disruptive for patients and is working to identify solutions to ensure a more stable source of supply is available for the SINEMET®IR® formulation. Based on our current information, we are hopeful to be able to rely on a more stable source of supply for the SINEMET®(IR formulation). However, for the time being, the supply disruption for SINEMET®(IR formulation) will continue until mid-2020 in the Canadian market.

Merck is committed to continue to provide regular updates on the situation to Health Canada and Parkinson’s Canada. For the most up to date information regarding SINEMET®supply availability Canadian patients can consult www.drugshortagescanada.ca.

WLGYP: What are the differences differences between SINEMET® and generic forms

MERCK: As defined by Health Authorities, a generic drug is a copy of a brand name drug. The generic drug is pharmaceutically equivalent to the brand name drug: it contains the identical medicinal ingredients, in the same amounts and in a similar dosage form. Generic medications may have different non-medicinal ingredients than the brand name drug, but the company must show that these do not affect the safety, efficacy, or quality of the drug compared to the brand name drug.[i]

Currently, approximately 90% of the market of levodopa-carbidopa in Canada is supplied by generic formulations. (Source: IQVIA: CompuScript June DM, 2019)

WLGYP: What is the timeline for SINEMET®IR to be available in Canada, U.S., U.K, and around the world?

MERCK: We expect that the supply disruption for SINEMET®IR will continue until mid-2020 in the Canadian market. Merck Canada Inc. remains committed to finding solutions to provide this product to Canadian patients as quickly as possible. The most up to date information regarding SINEMET®supply availability is regularly updated on www.drugshortagescanada.ca. It is important to note that currently, approximately 90% of the market of levodopa-carbidopa in Canada is supplied by generic formulations. (Source: IQVIA: CompuScript June DM, 2019)

We have been in contact with Parkinson Canada and Health Canada and continue to provide them with frequent updates on the situation as additional information becomes available.

Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Follow me, Larry Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Follow Co-host and Producer Niki Reitmeyer

Twitter: @Niki_Reitmayer

Thank you to…

Sandy Jones, Parkinson Canada

Nadia Stewart, Global News – watch her October 2018 report on SINEMET®

David Sangster, person with Parkinson’s, creator of Parkinson’s WorldTV, follow him on twitter @1and20Parkinsons

John Hougan, person with Parkinson’s

Gary Harysom, person with Parkinson’s

Kitty Fitton, person with Parkinson’s, observational comic at https://www.kittyfitton.com, follow her on twitter @kitty_fitton 

Rasheda Ali, author, speaker, advocate at http://rashedaali.net/, follow her on twitter @rashedaali

David Ashford Jones, read his blog https://phoenixrisingmyquestforchange.wordpress.com/pharmacology-basics/

Paul Mayhew Archer, author, producer, comedian archer.com/">http://mayhew-archer.com/

Eric Chapman, contributor, in the role of “Mark-Merck”

Rebecca Gifford, my amazing wife.

Merck, Merck.com, follow on twitter @merck, 1-800-444-2080, outside the US & Canada Merck is known as MSD 908-740-4000.

For more info on our presenting partner Parkinson Canada head to http://www.parkinson.ca/

The toll free hotline 1-800-565-3000

Or follow them on Twitter

Parkinson Canada           @ParkinsonCanada

Thanks also to our content and promotional partners

Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation

Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust. 

This is a special bonus episode of the When Life Gives You Parkinson’s podcast which we are calling “Extra Dosage.” Full episodes of Season 2 are available every other Wednesday.

This Extra Dosage is about a young man and his family, using their passion for running, to help raise funds for Parkinson’s research.

Anthony Kerkman, 32, lives in Pickerington, Ohio in an idyllic neighbourhood with sprawling manicured lawns, multi-tiered back decks, and driveways that are three cars wide. 

In September 2018, Anthony emailed me directly for the first time in his life.

A month later, he emailed again. I was the one fighting back tears.

Over the next 10 months, Anthony, Lesley and daughters Hannah, 15, and Sophia, 11, worked with the Michael J Fox Foundation and the Columbus Running Company to organize a family friendly 5k walk/run.

Anthony met with city officials, fire chiefs, and school administrators. He filed for permits, ordered t-shirts, found sponsors and rallied his family and friends from all sides.

I flew to Ohio for the August 24th Tremor Trot. Anthony, his family and I showed up before the sunrise to hang banners, greet volunteers and set up tables so his grandmas could run registration. Family friends staffed the water stations. It was a family affair from top to bottom. Even Hannah was instrumental in the event, she drew the very cool logo of an orange fox in sunglasses, running a race.

Before too long the crowds arrived. I immediately recognized many faces in the crowd. It was a mix of childhood friends, fraternity brothers, and my parent’s friends for 60-some years. They were there to support Anthony and his efforts to raise money for Parkinson’s research as much as they were there to support me and my journey with PD. Anthony wasn’t surprised, “We are down here watching you do all this advocacy in Canada and we’re not in Canada. We’re here. This was something we could do to show our support.”

By the time the whistle blew to start the 5k, 175 participants had signed up which far exceeded Anthony’s goal of 75. The event raise $8,000 for the Michael J. Fox Foundation, 100% of which will go directly to high-impact Parkinson’s research.

What I have learned through Anthony’s efforts is that everyone can do something to help raise funds or awareness of Parkinson’s. I host a podcast, speak on radio and TV and host events. That is my super power, while running in 5ks for charity is Anthony and Lesley’s. Use what comes natural to you to help make a difference in the lives of people with Parkinson’s disease. Go ahead, take the first step.

Parkinson’s IQ + You

In the coming months, I will be traveling with the Michael J. Fox Foundation’s to host a series of live, free, day-long educational events called “Parkinson’s IQ + You.” We will be featuring highlights of each event in upcoming Extra Dosage episodes. If you live in the United States, I hope to see you soon! See the full schedule and register for free here.

Saturday, September 14, 2019, the series kicks off in Atlanta, Georgia.

Saturday, December 14, 2019, Anaheim, California.

Saturday, January 11, 2019, Phoenix, Arizona.

Other sites recently announced include South Florida, Chicago, Oakland, and Houston.

If you have a comment or question about the podcast, you can email us: parkinsonspod@curiouscast.ca

 We invite you to add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Follow me, Larry Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Follow Co-host and Producer Niki Reitmayer

Twitter: @Niki_Reitmayer

Special thanks to…

Anthony Kerkman, Lesley Kerkman, Hannah and Sophia, Marty Gifford, Dan Gifford, Dee Gifford, Tracy Cherry, Debi Brooks, Columbus Running Company, and the city of Pickerington, Ohio.

For more info on our presenting partner Parkinson Canada head to http://www.parkinson.ca/

The toll free hotline 1-800-565-3000

Or follow them on Twitter @ParkinsonCanada

Thanks also to our content and promotional partners

Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation

Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease. 

A year ago, I started the podcast When Life Gives You Parkinson’s. I had been diagnosed a year earlier, on August 17, 2017, with Young Onset Parkinson’s Disease at the age of 45. I can feel the disease progressing.

I update my co-host Niki Reitmayer on my symptoms. In the last six months, I continue to have trouble getting a good night’s sleep, I’m now battling day time fatigue. I have long stretches of numbness and pain from neuropathy in my feet, increased body pains, anxiety, hot flashes, and unplanned weight loss. Maybe most concerning for me is that my wife Rebecca has noticed my personality is changing.

As I talk to others with Parkinson’s, “shift in personality” is not an uncommon observation. The spouses of BBC TV and radio writer, producer and comedian Paul Mayhew Archer, American Ninja Warrior Jimmy Choi and Amazing Race Canada winner Tim Hague all noticed personality shifts. 

Personality shifts in people with Parkinson’s can be triggered by many different things including; increased fears and loss of control of one’s life, medication side effects, depression, pain, anxiety, fatigue and missed or incorrect dosages of medication.

Our partners at Parkinson Canada offer the following advice when a person with Parkinson’s begins demonstrating more aggressive behavior, which occurs more subtly in the initial years and is more pronounced in late stages of Parkinson’s especially when accompanies by dementia.

• Stay calm.
• Review the PD medication schedule to see if a dose has been missed or taken incorrectly.
• Give the person space to cool down. Try to leave about 5 feet between you.
• Ask what is troubling the person so that you can identify the cause of the emotion and behaviour. • Listen to the person. Resist arguing or being confrontational, but provide reassurance. For example, “I know it is really frustrating when you can’t control what is happening…”
• Speak slowly, and in a clear, confident, and reassuring voice. Raising your voice may escalate the situation.
• Redirect the person to focus away from the issue causing aggression. Offer to take a walk, or do a calming activity together.
• If your safety is threatened, leave the situation, and return after a few minutes.

Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons

Follow me, Larry Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Follow Co-host and Producer Niki Reitmeyer

Twitter: @Niki_Reitmayer

Thank you to…

Paul Mayhew Archer archer.com/">http://mayhew-archer.com/

Tim & Sheryl Hague http://uturnparkinsons.org/

Jimmy Choi https://www.facebook.com/jcfoxninja/

Naomi Casiro BSc. (Kin), MPT, Certified PWR      https://www.neurofitbc.com/

Henry Gifford

Rebecca Gifford

For more info on our presenting partner Parkinson Canada head to http://www.parkinson.ca/

The toll free hotline 1-800-565-3000

Or follow them on Twitter

Parkinson Canada           @ParkinsonCanada

Thanks also to our content and promotional partners

Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation

Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust. 

Larry Gifford is a 47 years old husband and dad with a great career and a degenerative brain disorder without a cure. Join him, his wife Rebecca and their son Henry as they share with you, and co-host Niki Reitmayer, the journey into what it’s like to live and work with the disease. Season 2 launches Wednesday September 4th.

This is a special bonus episode of When Life Gives You Parkinson’s which we are calling “Extra Dosage.” Full episodes of Season 2 of the podcast will be released every other Wednesday beginning in September 2019.  

If you were to imagine Michael J. Fox in your mind right now. You probably are picturing the guy from Back to the Future or The Good Wife. Think about when you’ve seen him interviewed on TVnews programs or when he testified before congress. Those uncontrolled, involuntary movements Michael J. Fox is known for are not symptoms of Parkinson’s. It’s called dyskinesia. It’s a reaction to long-term levodopa use. Yes, the gold standard drug treatment for Parkinson’s, when taken over a long period of time, will effectively treat some of your PD symptoms like tremor, slowness and stiffness, but cause you to move uncontrollably. The Michael J. Fox Foundation describes it as fidgeting, writhing, wriggling, head bobbing or body swaying. It is important to note that not everyone with Parkinson’s will develop this complication. It is more common with people who are diagnosed with Young Onset Parkinson’s Disease (YOPD) or under the age of 50. There was no guarantee I would experience dyskinesia. I didn’t particularly want it. And in the end, I didn’t really have a vote.   

After my family returned from World Parkinson Congress in Japan in mid-June, I was jet lagged and my med times and dosages were a bit out of whack. That’s when dyskinesia took hold. It had only ever really happened once before. About six months ago. I do sometimes sway and jerk a bit here and there, but I am a relative stranger to experiencing a full-on, dyskinesia episode.   

It was Saturday night, my family was at the dinner table and I started to sway and rock. Slowly at first and then gradually faster and more erratic. My head started to go to the right, my shoulder popped to the left, my neck jerked back and forth. And it repeated over and over again.  

About 5 minutes into the dyskinesia, I asked my wife Rebecca to record a video.

The dyskinesia lasted 45 minutes. I posted the video on Facebook, Twitter and Instagram accounts. For friends and family who’ve not witnessed many physical symptoms of my Parkinson’s, this came as a shock. For people familiar with PD, my episode was rather mild.

Two days later, I was at a manager’s off-site meeting with 18 of my colleagues and dyskinesia set in again. It lasted an hour. And then it happened a day later during my exercise class. I was doing a bear crawl and it was as if the bear was drunk. I couldn’t tell my feel what to do anymore. It lasted 30 minutes.      

In this Extra Dosage episode, I turn to friends and fellow people with Parkinson’s who’ve been dealing with dyskinesia longer than I have. Becca Miller, 45, is a psychologist at a community mental health center in New Haven, Connecticut. She was diagnosed with Parkinson’s disease six years ago. She began to have dyskinesia two years ago.  Jim Smerdon, 45, has been living in Vancouver, B.C., with Parkinson’s since 2007. His dyskinesia was so severe he opted for Deep Brain Stimulation (DBS) surgery in 2014 in search of relief. I wanted to get them to answer some questions I had about dyskinesia and some that my friends and family posed to me after watching the video.

Also in this Extra Dosage episode, the Michael J. Fox Foundation (MJFF) has announced a series of free, daylong, live events called “Parkinson’s IQ + You.” MJFF Deputy CEO Sohini Chowdhury joined the podcast to chat about it, “the goal is to create a forum where we can share information with Parkinson’s patients, family members, friends, all with the goal of empowering people with Parkinson’s and care  partners so they can optimally manage their disease and learn more about participating in research.”

The “Parkinson’s IQ + You” series exciting for a number of reasons, but most relevant to me is that I have been asked to travel with the Michael J. Fox Foundation and be the host and moderator of these events across America. You can get more information at www.michaeljfox.org/PDIQ.

There are other events I will be attending in the coming months that were mentioned in this episode.

Saturday, August 15, 2019 – Join me at Tour de Fox Pacific Northwest in Port Coquitlam, British Columbia. Details here: https://tourdefox.michaeljfox.org/pacificnorthwest

Saturday, August 24, 2019 – Join me inin Pickerington Ohio for the inaugural Tremor Trot. My nephew Anthony and his family are working with Team Fox on this family friendly 5k. You can join us or donate to the cause. Race details here:   You can also donate to the When Life Gives You Parkinson’s Team here:

Sunday, September 8, 2019 – I am the emcee and a walker for the Parkinson Superwalkin Vancouver.  Society of British Columbia. Funds raised in BC through this event help to provide valuable support services and education offered by Parkinson Society British Columbia in BC as well as fund research efforts. You can also donate to the When Life Gives You Parkinson’s Team here.

Saturday, September 14, 2019 – I will be in Atlanta, Georgia for the first “Parkinson’s IQ + You” event. Register for free here.

If you have a comment or question about the podcast, you can email us: parkinsonspod@curiouscast.ca

Follow me, Larry Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Follow Co-host and Producer Niki Reitmayer

Twitter: @Niki_Reitmayer

 Special thanks to…

 Becca Miller, Jim Smerdon, Emma Lane, Sohini Chowdury, Rebecca Gifford and Henry Gifford.

Credits

Dila Velazquez – Story Producer

Rob Johnston – Senior Audio Producer

I am in Kyoto, Japan for the 5th World Parkinson Congress (WPC). WPC is a global Parkinson's event, which is held every three years and it opens its doors to all members of the Parkinson's community, from neurologists and researchers to those living with the disease.   

The WPC wrapped up the fourth and final day by announcing Barcelona, Spain as the next destination for the World Parkinson Congress in 2022. In this episode of the pod, my wife Rebecca and I sit down with Amazing Race Canada Season One winner Tim Hauge and his wife Cheryl to talk about the gifts Parkinson’s have given our families.

There’s also a roundtable discussion where participants of WPC2019 share thoughts on what they’ll take away after four days of meetings, workshops and socialization.

Eli Pollard, Executive Director of World Parkinson Coalition which organizes the World Parkinson Congress gets the final word on the podcast declaring it quite a success with a few themes bubbling up to the surface. Families and Parkinson’s is really a hot topic and there were more kids of parents with Parkinson’s were at this WPC than ever before and for the first time actually participated as speakers in a workshop. The other notably theme was the rising interest in more programming geared towards the Young Onset Parkinson’s Disease (YOPD) contingent.

Follow me, Larry Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspodirt

For more info on the World Parkinson Congress head to www.WPC2019.org

Facebook: Facebook.com/WorldPDCongress/

Twitter: @WorldPDCongress

YouTube: WorldPDcongress

Instagram: @worldpdcongress

Thank you to:

Tim & Sheryl Hauge

Andy Butler, partner in Parkinson’s

Vicki Dillon, person with Parkinson’s

Benjamin Stetcher, https://tmrwedition.com/

Anne Cohn Donnelly D.P.H., Michael J. Fox Foundation Patient Council

David Murray, Cure Parkinson’s Trust

Eli Pollard, Executive Director of World Parkinson Coalition

I am in Kyoto, Japan for the 5th World Parkinson Congress (WPC). WPC is a global Parkinson's event, which is held every three years and it opens its doors to all members of the Parkinson's community, from neurologists and researchers to those living with the disease.   

Parkinson’s has often been described as an old, white man’s disease. The truth is Parkinson’s is not that exclusive of a club. In fact, three things are very clear in Kyoto as the WPC wraps up day three: young people, women and people of all colours are being diagnosed with Parkinson’s disease.

During a roundtable discussion on this episode of the podcast, Jim Smerdon, a person with Parkinson’s from Vancouver, B.C., noticed how indiscriminate PD is on the first day. “My question to all of these researchers, and I’ve yet to receive a decent answer, is what does it mean to them that when you looked around at the opening ceremonies and there is such a diversity. This disease covers every ethnicity, every geography, every demographic, every age core, and almost appears equally.”  

A perfect example of just how diverse people with Parkinson’s can be. One of Omotola Thomas’ doctors in South Africa told her, “I think you have a form of Parkinsonism, but it’s hard for me to diagnose you with it because you are a young, black, female and this is an old, white man’s disease.” Thomas was born and raised in Nigeria. She lived in the United States, South Africa and now the United Kingdom. She began to have symptoms while in America at the age of 29. They took blood and ran every test they could think of, but because she the opposite of old, white and male Parkinson’s wasn’t initially considered. It took six years, seemingly endless tests, a move to South Africa and then to the U.K., before she was diagnosed with Young Onset Parkinson’s disease (YOPD) at the age of 35.  

The time has come for a new narrative around Parkinson’s. Perhaps it could begin with an update to the old, white man sketched by neurologist Sir William Richard Gowers in 1886 to illustrate some physical symptoms of PD. It appears in Wikipedia and anytime anyone Google’s Parkinson’s disease. Another suggestion, which was a Hot Topic in the morning session, is to begin to address the needs and differences that exist between woman and men with Parkinson’s. Thomas, and women like her, have a different Parkinson’s experience. For instance, their Levodopa-Carbidopa to control Parkinson’s symptoms only works about three weeks out of every four. “Men don’t tend to suffer the same hormonal fluctuations that we do. We have certain times of the month where our medications don’t work at all. And that is very difficult to deal with.” Thomas adds, “I don’t think that’s something you experience.” She’s right. I don’t.

The frustrations concerning the old, white, male stereotypes are real. Treating PD the same way, with the same drugs, no matter your gender, age or ethnicity – let alone your dominate symptoms – leads to delayed diagnosis and to prescribing inadequate pharmaceuticals. A 2019 attitude and individualized approach to each person’s Parkinson’s is desperately needed. And the whispers of past WPC’s are becoming a roar that the PD community will soon be unable to ignore any longer. 

Also on this episode, kids and care partners play a prominent role in the topics and discussions at World Parkinson Congress. 

Follow me, Larry Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspodirt

For more info on the World Parkinson Congress head to www.WPC2019.org

Facebook: Facebook.com/WorldPDCongress/

Twitter: @WorldPDCongress

YouTube: WorldPDcongress

Instagram: @worldpdcongress

Thank you to:

Omotola Thomas, person with Parkinson’s from United Kingdom

Jim Smerdon, person with Parkinson’s from Vancouver, B.C.

Andy McDowell, person with Parkinson’s from Auckland, New Zealand

Lily & Pearl McDowell, children of Andy

Ardrew Davenport, Board Member, Parkinson Society of British Columbia

Rebecca Gifford, partner in Parkinson’s from Vancouver, British Columbia

I am in Kyoto, Japan for the 5th World Parkinson Congress (WPC). WPC is a global Parkinson's event, which is held every three years and it opens its doors to all members of the Parkinson's community, from neurologists and researchers to those living with the disease.

Joy Milne of Perth, Scotland fell in love with Les Milne when they were 16 years old. They married, had three kids, he was a doctor and she was a nurse. They lived a good life. Sometime in their 30’s, Joy noticed her husband started to smell different; more musky and unpleasant. She didn’t realize at the time she was smelling Parkinson’s. It was twelve years later, her husband was diagnosed at the age of 45. Over the years, while attending support groups and other functions she realized other people with Parkinson’s had a scent like her husband’s. Nearly two decades on, she began to ask why no one was using the smell of Parkinson’s as a bio marker.

 The answer? No one else seemed to have noticed.

 After testing her over and over again. Science won out. It turns out Joy can smell the over production of sebum. Her work is detailed on a poster at World Parkinson Congress titled “Parkinson’s smell levels, symptom management and empowerment; when Joy met Allison.” In this episode of When Life Gives You Parkinson’s, Milne and Allison Williams talk about how Joy’s ability to smell different levels of Parkinson’s has empowered Allison and improved her PD symptoms.

 Joy Milne also joins 50-year old Matt Eagles, who has had Parkinson’s since age 7, and Jonny Acheson who is three years passed diagnosis to chat about what they’ve learned at day two of the WPC. From patient advocacy, the importance of care partners and important discussions around compulsive behavior side effects of certain drugs to the absolute shock one gets when he first uses a Japanese toilet.

Geneticist Matt Farrer of UBC and Yoshio Tsuboi, M.D., Ph.D. of Fukuoka University provide an interesting peek inside the complicated world of genetic research. They share what they believe is their next most promising result they have for treating Parkinson’s based on genetics.

 Follow me, Larry Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspodirt

For more info on the World Parkinson Congress head to www.WPC2019.org

Facebook: Facebook.com/WorldPDCongress/

Twitter: @WorldPDCongress

YouTube: WorldPDcongress

Instagram: @worldpdcongress

Thank you to:

Joy Milne, Allison Williams, Matt Eagles of https://parkylife.com/, Jonny Acheson, Matt Farrer, and Dr. Yoshio Tsuboi.

I am in Kyoto, Japan for the 5th World Parkinson Congress (WPC). WPC is a global Parkinson's event, which is held every three years and it opens its doors to all members of the Parkinson's community, from neurologists and researchers to those living with the disease.   

 Opening ceremonies were held on June 4, 2019 at the Kyoto International Conference Center. More than 2,600 registrants are in attendance from 65 different countries. The keynote of the opening ceremonies was reserved for the widow and care partner of one of the great Parkinson’s advocates of all time. Tom Isaacs was full of hope, humour and optimism, despite his Parkinson’s diagnosis. He died suddenly in 2017. His wife, Lindsey Isaacs, offered a real and raw insight into the care partners’ plight.

“As Tom’s Parkinson’s progressed life got harder for everyone involved.” She continued, “For me, hope, humour and optimism were no longer enough. I became irritable and anxious about everything. I felt like a complete failure. I was his wife. I had been a trained nurse. And I am an acupuncturist. I believed I should’ve been able to cope with whatever our life through at us.” It was in that dark moment that she realized it was okay to get help. And she did. It’s was a message that seemed to resonate with care partners in attendance and one that deserved the spotlight at WPC.

Prior to opening ceremonies, there was a pre-congress course on activism and advocacy. In the podcast I sit down with the course leader Tim Hague. Hague and his son won the first season of Amazing Race Canada after his diagnosis. He’s authored the book Perseverance: The Seven Skills You Need to Survive, Thrive, and Accomplish More Than You Ever Imagined and he’s the founder of U-Turn Parkinson’s in Canada. In addition, I invited four attendees to the discussion patient advocate and blogger Heather Kennedy  from San Francisco, Dr. Sarah King, PT, DPT of Austin, Texas is founder of Invigorate Physical Therapy, Dr. Siva Shanthipriya is a person with Parkinson’s from India, and Brian Toronyi is a person with Parkinson’s from Grand Rapids, Michigan . We discussed the role of advocacy in Parkinson’s especially as it relates to wellness and research. Toronyi made an impassioned pleas during the course and again on the podcast, that we need to change narrative around Parkinson’s. As a community, we’re quick say Parkinson’s isn’t going to kill us. Toronyi and others like him suggest the opposite is true. Parkinson’s is killing us, slowly, methodically, and degenerately. He says, “We don’t know when we’re going to die, but it’s like a ticking time bomb.”

Follow me, Larry Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspodirt

For more info on the World Parkinson Congress head to www.WPC2019.org

Facebook: Facebook.com/WorldPDCongress/

Twitter: @WorldPDCongress

In June, I will be traveling to Kyoto, Japan for the 5thWorld Parkinson Congress(WPC). WPC is a global Parkinson's event that opens its doors to all members of the Parkinson's community, from neurologists and researchers to those living with the disease.  Since my diagnosis in August 2017, I’ve launched the podcast When Life Gives You Parkinson’s. As an extension of that podcast, I have teamed up with the World Parkinson Coalition to help preview WPC2019. 

Etienne Hirsch is Director of the French National Institute for Neuro Science, neurology and psychiatry. He’s a board member and chair for the basic science program committee for this year’s WPC. In his plenary talk, Hirsch will be examining the question, “Are we moving towards personalize medicine?” Hirsch isn’t hiding his passion for the topic, “I think that it is the most important challenge these days for Parkinson's disease.” He adds, “By the way I should not say Parkinson's disease, I should say Parkinson's diseaseswith an “s.” The concept is that everyone diagnosed with Parkinson’s is not dealing with the same disease, but different diseases that deserve different treatments.

Much of Hirsch’s work revolves his belief that inflammation may actually trigger the events that lead to the death of the dopamine producing brain cells. He recalls that, until recently, it was a controversial theory, “Some people were even laughing saying that neuro inflammation is a consequence of neuron degeneration. And now we know that in fact the neuro inflammatory processes are not just a consequence of neuron degeneration. These events really participate to the cascade of events leading to degeneration in the past.” In his workshop, Hirsch will help lead a discussion around why some cells degenerate in people with Parkinson’s and some do not.

Eli Pollard, Executive Director of the World Parkinson Coalition, which is the organization that hosts the triennial World Parkinson Congress is expecting just over 3,000 people to attend the event in Kyoto. She encourages participants to check out “Wellness Way” which features free fitness and exercises classes in the renewal room, complimentary massage and Raiki, the Care Partner Lounge, there is a Quiet Room for people who might need to escape the crowds or take a quick nap.

There’s also a clinical research village sponsored by the Michael J. Fox Foundation and with in-kind support from the Cure Parkinson's Trust. “It is a space for just people to learn about clinical research clinical trials what you should ask if you want to engage in a clinical trial.” Pollard continues, “What are your rights as a participant in a clinical trial? What do you need to know before you sign on the dotted line?” The research village will be open all the hours that the exhibit halls.

Finally, Pollard has some last minute packing tips. She recommends you pack comfortable clothes and a rain coat, because it’s going to be hot and it is the rainy season in Kyoto. While some attendees will be wearing shorts, there will be air conditioning in the conference center, so pants may be more appropriate if you tend to be cold. Do not forget to bring a pen and pad of paper to take notes and trade information with other attendees, unless you are using your phone or tablet. Most importantly, if you are a person with Parkinson’s, Pollard urges you to pack at least twice the amount of medication you think you will need and better yet, pack three times the amount. She recommends you spread it out between your carry on, your checked luggage and your travel companion.

Each episode of the WPC2019 Podcast, I check in with James Heron, the Executive Director of the Japanese-Canadian Cultural Centre. This week, we wrap up our Japanese tutorial with a hodge-podge of tips and insights. Key among them is to speak directly and clearly. In North America, we tend to use idioms like “pulling-your-leg,” “bite-the-bullet,” and “dime a dozen.” When literally translated by a Japanese speaker, these phrases can be confusing. Heron uses “pulling-your-leg” as an example, “There is an expression in Japanese, ashi o hipparu,which means you have to pull someone's leg which actually means to purposefully hold someone back, to make them fail, almost to sabotage someone.”

Follow me, Larry Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

For more info on the World Parkinson Congress head to www.WPC2019.org

Facebook: Facebook.com/WorldPDCongress/

Twitter: @WorldPDCongress

YouTube: WorldPDcongress

Instagram: @worldpdcongress

Thank you to:

Etienne Hirsch, Director French National Institutes of neurosciences, cognitive sciences, neurology and psychiatry.

Eli Pollard, Executive Director World Parkinson Coalition

James Heron, Executive Director of Japanese Canadian Cultural Centre  

Credits

Dila Velazquez – Story Producer

Rob Johnston – Senior Audio Producer

In June, I will be traveling to Kyoto, Japan for the 5th World Parkinson Congress(WPC). WPC is a global Parkinson's event that opens its doors to all members of the Parkinson's community, from neurologists and researchers to those living with the disease.  Since my diagnosis in August 2017, I’ve launched the podcast When Life Gives YouParkinson’s. As an extension of that podcast, I have teamed up with the World Parkinson Coalition to help preview WPC2019. 

At the congress, there will be many sessions, workshops and round tables focused on issues unique to people with Young Onset Parkinson’s Disease (YOPD). A person is typically diagnosed with Parkinson’s at the age of 60. If you are diagnosed under the age of 50, you are considered YOPD. Reports vary, but the Michael J. Fox Foundation says somewhere around 10% of Parkinson’s patients fall into this category. On the podcast, fellow YOPD patients Emma Lawton and Rebecca Miller share their experiences living with the disease and offer tips around finding happiness, parenting and working with PD. Both were diagnosed at the age of 29 and will be speaking at WPC2019.

Three months after her diagnosis in 2013, Emma Lawton suddenly stopped going out and doing anything, because she didn’t know how to talk about it. “I was making my life worse by letting Parkinson's make me feel the way I was letting it feel,” said Lawton. “I was actually letting it win and it was stopping me from going out and doing stuff.” 

Upon reflection, Lawton believes she gave in too easily at the beginning and now realizes she’s in control of her life, her happiness and how she deals with PD. In January, in an effort to make up for lost days of happiness, she started seeking daily adventures through her “itlist.com/">F--- it List.”

Every day of 2019, Lawton is trying a new activity. She’s already been to a gun range, learned how to arrange flowers, and was shown how to be a crime scene investigator. The adventures are documented on YouTubeand her itlist.com/">website. “I'm kind of hoping at the end of it to have something which shows me as a person what makes me happy, but also along the route might kind of inspire others to try and take control of their own happiness. Actually having something that makes me work on my own happiness and work my own well-being is actually really important to me.”

Rebecca Miller has earned her PhD, is an assistant professor in the department of psychology of Yale School of Medicine, a single mother of a Kindergartener, and trying to juggle all of that with the progressing symptoms of Parkinson’s. “I really worried that I would have to stop working and that I wouldn't be able to do my job. Ironically, it's sort of actually in some ways at least for now propelled me further in my career.” Prior to PD, Miller’s goals didn’t include working her way along the faculty tract. Now she is working towards a promotion of Associate Professor and she’s writing more than she ever has.

How does she balance it all? “Oh, I think maybe the idea of a balance is a myth,” she said. “Iguess I do my best to do the juggle. So, it’s really about staying flexible, accepting help, asking for help -- that is a real challenge for me.” Miller also focuses on prioritizing activities, “I know that I may not have so much energy during the day and at certain times of day.” In those moments, Miller says there is a decision to make, “What's more important; going on my daughter's field trip or working today? And just thinking, you know what? She's never going to be in kindergarten again.”

Miller, like many parents with PD, feels guilty about not being able to always do the things her daughter wants her to do. She is beginning to chat about PD with her five-year-old, but just the very basics as she tries to match the conversation with where her child is developmentally, using language she understands and reassuring her at every step of the way.

Each episode of the WPC2019 Podcast, I check in with James Heron, the Executive Director of the Japanese-Canadian Cultural Centre. He teaches us words and phrases that will come in handy in Japan. This episode, Heron teaches us the phrase Nihon-go ga hanase masen, which means, “I can’t speak Japanese.”

 Follow me, Larry Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

For more info on the World Parkinson Congress head to www.WPC2019.org

Facebook: Facebook.com/WorldPDCongress/

Twitter: @WorldPDCongress

YouTube: WorldPDcongress

Instagram: @worldpdcongress

Thank you to:

Emma Lawton. Follow her adventures here itlist.com/">https://www.thef---itlist.com/, on YouTubeand Twitter

Rebecca Miller, PhD Assistant professor in the department of psychology of Yale School of Medicine 

James Heron, Executive Director of Japanese Canadian Cultural Centre  

In June, I will be traveling to Kyoto, Japan for the 5thWorld Parkinson Congress(WPC). WPC is a global Parkinson's event that opens its doors to all members of the Parkinson's community, from neurologists and researchers to those living with the disease.  Since my diagnosis in August 2017, I’ve launched the podcast When Life Gives YouParkinson’s. As an extension of that podcast, I have teamed up with the World Parkinson Coalition to help preview WPC2019. 

Since my diagnosis, the most unsolicited advice I’ve received is about my diet. As a change of pace, I’m actually asking for advice today from Dr. Laurie Mischley, a naturopathic physician and nutritional neuro-epidemiologist. For the past seven years, she has been tracking 2,000 people with Parkinson’s to determine how foods, vitamins and minerals are impacting the rate of progression.

In this episode, Dr. Mischley comments on the positives and negatives of many diets that have been recommended to me including Keto, Gluten-Free, 7:1, and the 24 eggs a day diet. 

Based on her research, Mischley finds the people with Parkinson’s that are doing the best overtime, post-diagnosis, are eating fresh fruits, fresh vegetables, non-fried fish, nuts, seeds, olive oil, coconut oil, wine, fresh herbs and spices. She notes that this is closely resembles the Mediterranean diet. As important as what to eat, is what not to eat. Mischley has identified several foods associated with statistically-significant, faster than average Parkinson’s progression including dairy, beef, fried foods, soda, canned fruits, and canned vegetables.

Organic and local foods matter too. In a true or false question in her study, people who said TRUE to the statement, “I try to eat organically grown foods when possible” are doing significantly better than people who do not go out of their way to eat organic. The same thing is true for the statement, “I shop at local farmers markets, co-ops and try to eat locally and seasonally.”

It is because of research and people with Parkinson’s willing to participate in that research that there are best practices, better treatments, and continuing hope for a bio-marker and a cure. Dr. Soania Mathur is a family physician who has been living with Parkinson’s for 21-years. She is speaking at WPC2019 about advocacy and research.

“I think there are a lot of myths and misconceptions about clinical trials,” says Mathur on When Life Gives You Parkinson’s. “I think some of the barriers are probably logistical. It’s hard sometimes to fit into our schedules especially when you have Young Onset and you maybe work or raising a young family. Some of the clinical trials can be quite involved in terms of time. Some of it is that people just don’t know how to find trials they would qualify for and be in their geographical area.”

During our discussion, Dr. Mathur also outlined some key misconceptions. She notes that some people like the idea of clinical trials, but are fearful that they will lose their current medical care. Others fear they will be subjected to tests that will be painful or inconvenient. And some are concerned that they are being used as a guinea pig for potentially dangerous medication or treatment plan. The reality is while there are invasive clinical trials, there are also observational clinical trials where you fill out questionnaires, there are genetic clinical trials where you simply provide a spit sample, and there are a lot of trials where you have to go in one time and you’re not subjected to long follow up.  Without all of these types of clinical trials the science cannot progress, our understanding of the disease won’t progress, and certainly the development of new treatments won’t occur.

When you ready to participate in research, Dr. Mathur suggests you look into data bases like Fox Trial Finder, which she describes as Match.com for clinical trials. These data bases ask for your demographic information and Parkinson’s history and then suggest clinical trials near you which best suit your situation.

Each episode of the WPC2019 Podcast, I’m going to check in with James Heron, the Executive Director of the Japanese-Canadian Cultural Centre to teach us a new word or phrase and help us better understand the culture so we can avoid embarrassing ourselves or offending our hosts. This episode Heron teaches us the phrase Toire wa doko desu ka?Which translates to “where is the washroom?”

When you enter a Japanese washroom, Heron cautions that there are three types of toilets you may encounter. There is a traditional Japanese toilet. This toilet features a long porcelain trough that you squat over. You’re likely to only encounter this in the countryside and not in the cities. You might encounter a traditional western toilet. This a toilet much like we have here in North America. One difference is that when you flush, water comes out of a fountain for hand washing before being used to flush any liquids or solids. And then there is a modern or “space age” toilet. These toilets can feature lights, a seat warmer and many options for spray cleaning and drying. Heron notes there is no need to be intimidated, because there are pictures clearly identifying where water will be sprayed depending on your needs and that it is quite pleasant and hygienic. 

Follow me, Larry Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

For more info on the World Parkinson Congress head to www.WPC2019.org

Facebook: Facebook.com/WorldPDCongress/

Twitter: @WorldPDCongress

YouTube: WorldPDcongress

Instagram: @worldpdcongress

Thank you to:

Soania Mathur, MD and author of Shaky Hands: A Kids Guide to Parkinson’s Disease,My GrandPa’s Shaky Handsand the blog, “Designing a Cure; Living Well with Parkinson’s Disease.” Follow Soania on Twitter: @SoaniaMathur

Laurie Meschley, ND, MPH, PhD(c). You can follow Laurie’s research on her website “Education is Medicine” on her Facebook pageand on Twitter: @NatNeuro

James Heron, Executive Director of Japanese Canadian Cultural Centre  

Credits

Dila Velazquez – Story Producer

Rob Johnston – Senior Audio Producer

In June, I will be traveling to Kyoto, Japan for the 5thWorld Parkinson Congress(WPC). WPC is a global Parkinson's event that opens its doors to all members of the Parkinson's community, from neurologists and researchers to those living with the disease.  Since my diagnosis in August 2017, I’ve launched the podcast When Life Gives YouParkinson’s. As an extension of that podcast, I have teamed up with the World Parkinson Coalition to help preview WPC2019. 

Traveling to a foreign country can be difficult and intimidating whether you have Parkinson’s disease or not. In this episode of the WPC2019 podcast, we concentrate on learning some basic Japanese vocabulary and learn about the cultural nuances and expectations. James Heron, Executive Director of the Japanese Canadian Cultural Centre, offers proper pronunciation and explains the translation to more than a dozen useful Japanese words and phrases from how to introduce yourself and what to say before a meal and how to ask where the washroom can be found.

Heron also helps us better understand the Japanese culture. Ambiguity, for instance, is one of the traits you’ll encounter while interacting with Japanese people. He says, “It can be difficult to sometimes draw out opinions or get a clear ‘yes’ or ‘no.’” Ambiguity is driven by one of the most fundamental Japanese cultural concepts called wa, which is the Japanese word for harmony. According to Heron, “It’s very central to the Japanese psyche. As is the need to not put your opinions out there until group consensus has been reached.” Additionally, in Japan, things don’t always need to be said to be understood. Heron uses the Haiku poem to illustrate this idea, “While it’s only 17 syllables, there can be cultural markers in those very, very short poems that can open up huge swaths of meaning to the Japanese.” It’s really important when communicating with Japanese people you should be a little more patient than you might be in everyday life and avoid pushing for an opinion or answer.

When it comes to eating, Heron offers a menu full of insights. For instance, never stick chopsticks upright in your rice, because that is part of the funeral ritual. Also, if you can’t use chopsticks you can ask for a spoon or fork and in Japan sushi is a hand food, so you can eat it with your hands.

There are many other lessons tucked inside this episode including what to know about the “Japanese smile,” what to expect when you enter a Japanese washroom, where you can go to get quick cash, and what to know about slurping noodles.

Follow me, Larry Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

For more info on the World Parkinson Congress head to www.WPC2019.org

Facebook: Facebook.com/WorldPDCongress/

Twitter: @WorldPDCongress

YouTube: WorldPDcongress

Instagram: @worldpdcongress

Thank you to:

James Heron, Executive Director of Japanese Canadian Cultural Centre  

Credits

Dila Velazquez – Story Producer

Rob Johnston – Senior Audio Producer

In this episode I speak with Gila Bronner, founder and former Director of the Sex Therapy Service at Sheba Medical Center in Israel. She is also a sex therapist at the Movement Disorders Institute of the medical center. She tells me Neurologists, nurses, and other health professionals, in general, are not taught about sexual issues patients may have, where to refer them when issues arise, or how to talk to patients about it.

Bronner has proven there is an association between Parkinson’s and sexuality. In her research, Bronner discovered nearly three of every four people she studied with Parkinson’s had some sort of sexual problem. Aging and challenges from Parkinson’s both contribute to the issues, but people with Parkinson’s were still 30% to 50% more likely to have problems compared to people of the same age who did not have PD. Parkinson’s effects desire, arousal and the ability to orgasm. Bronner finds the issues are often significant enough that couples stop being intimate all together.

In Kyoto and in this episode of the podcast, she outlines the various sexual problems associated with Parkinson’s disease, various treatments, communication issues, and how to keep intimacy with your partner. 

Each episode of the WPC2019 Podcast, I’m going to check in with James Heron, the Executive Director of the Japanese-Canadian Cultural Centre to teach us a new word or phrase and help us better understand the culture so we can avoid embarrassing ourselves or offending our hosts. This episode, Heron explains how to introduce yourself. Hajimemashite Watashi wa Larry desu loosely translated means (It is a beginning) (Hi!) (I am) (Larry) (to be).

Follow me, Larry Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

For more info on the World Parkinson Congress head to www.WPC2019.org

Facebook: Facebook.com/WorldPDCongress/

Twitter: @WorldPDCongress

YouTube: WorldPDcongress

Instagram: @worldpdcongress

Thank you to:

Gila Bronner, ,

James Heron, Executive Director of Japanese Canadian Cultural Centre  

In this special episode of When Life Gives You Parkinson’s, the Parkinson’s community from around the world come together to share what they believe you should know about this disease. I also interview Matt Eagles. He was diagnosed with Parkinson’s when he was 8-years-old. He just helped to create and launch a new initiative called “Parky Life.”

Follow me, Larry Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Follow Co-host and Producer Niki Reitmeyer

Twitter: @Niki_Reitmayer

Thank you to Matt Eagles of ParkyLife https://parkylife.com/ and everyone who contributed to this episode.

For more info on our partner Parkinson Canada head to http://www.parkinson.ca/

The toll free hotline is 1-800-565-3000

Or follow them on Twitter

Parkinson Canada            @ParkinsonCanada

Parkinson Society BC      @ParkinsonsBC

In this episode, I talk with Dr. Aleksander Videnovic, a neurologist specializing is movement disorders and sleep medicine at Massachusetts General Hospital and Harvard Medical School. Dr. Videnovic will be speaking at WPC and hosting a roundtable, both of which will focus on Tips and Tricks to Managing Sleep Disorders in Parkinson’s. This link will take you to the full program schedule. The first tip he shares is to report poor sleep to your neurologist and general practitioner. He says sleep disorders are widely under-reported.

The most common issue for people with Parkinson’s is sleep fragmentation. It’s a Parkinson’s specific insomnia that makes it difficult to stay asleep through the night. Dr. Videnovic preaches the importance of a good night’s sleep, “We need sleep to reset our system, we need sleep to consolidate our memories and even more recently it has been discovered that sleep is the stage during which toxic metabolites get eliminated from our brain and from our nerve cells.”  If that toxic waste is not expelled from our brain, Dr. Videnovic notes it can cause negative effects on person’s performance, safety, alertness, exacerbate symptoms of Parkinson’s disease or keep Parkinson’s medications from working effectively.

Each episode of the WPC2019 Podcast, I’m going to check in with James Heron, the Executive Director of the Japanese-Canadian Cultural Centre to teach us a new word or phrase and help us better understand the culture so we can avoid embarrassing ourselves or offending our hosts. This episode, Heron explains the Japanese people deal in a lot of ambiguity. It is difficult at times to draw out opinions or get a definitive yes or no answer. Culturally, Heron says this is tied to the important and fundamental Japanese concept of harmony or “Wa.” The word Wa is often used in the Japanese language to give a connotation of something’s Japanese-ness. For instance, Washoku, is Japanese food and Wafuku is Japanese clothing. You can Google the words to hear proper pronunciations.

Super Awesome Science Show (SASS) talks with Larry Gifford about his journey with Parkinson's and find out how he manages to cope both physically and emotionally. His story is both compelling and also inspiring and will reveal why his podcast has been designated at one of Apple Podcast’s best of 2018.  

In our SASS class, we’re going to explore the efforts to find answers to help those with Parkinson’s Disease. We speak with Rachel Dolhun, the Vice-President of Medical Communications with the Michael J. Fox Foundation. She reveals how the foundation is working to improve awareness and research into this disease. We also learn of her personal story as both a researcher in movement disorders and also as a communicator at the Foundation. She reveals that working to help those with Parkinson’s is truly a vocation.     

If you enjoy The Super Awesome Science Show, please take a minute to rate it on Apple Podcasts and be sure to tell a friend about the show. Thanks to you, we’ve been nominated for a Canadian Podcast Award as Outstanding Science and Medicine Series. Let’s keep the awesome momentum going together!  

Twitter: @JATetro

Email: thegermguy@gmail.com

David Sangster is an Ambassador for World Parkinson Congress. On April 3, 2019 David is having Deep Brain Stimulation (DBS) surgery. It’s a treatment used for late-stage Parkinson’s disease that involves surgically implanting electrodes into the brain. The electrodes deliver small electric pulses which help reduce slow movement, tremor and stiffness. David was diagnosed in 2011 and lives with severe tremoring and twitching, dyskinesia, rigidity and more.  He chatted with me on the podcast a couple weeks before surgery. I asked if he was nervous, “No. I just feel ready, I think. I know the risks. It’s worth it.” He’s documented his journey to DBS on his YouTube channel. His coming out party after the surgery will be attending the WPC2019 in Kyoto.

There will be a lot of researchers at the congress too and for good reason according to Dr. Simon Stott, “There is never a good time to have Parkinson’s, but now is the most dynamic time for Parkinson’s research.”

Stott is Deputy Director of Research at The Cure Parkinson's Trust in the UK and his website “Science of Parkinson’s” is plain English information about the research conducted on Parkinson’s. He’s been researching for the last 15 years, “When I first got into Parkinson’s research, there was one or two clinical trials that were looking at disease modification of Parkinson’s. That is slow, stop or reverse the condition. And now there is just dozens and dozens.” While he gets excited about the research, Stott is weary about expressing it too much, because he doesn’t want to raise people’s expectations. He explains that high expectations can impact research results by triggering a placebo effect and cause the group not getting the treatment to think the treatment is having beneficial effects. Additionally, Stott notes that 95% of everything that’s gone into clinical trials thus far have failed, so it’s prudent to approach whatever you’re testing with an assumption that it is going to fail. 

In this episode, James Heron teaches us the Japanese toast, “Kanpai!” It’s really means “dry cup” and is the equivalent to “bottom’s up!” or “cheers!” You can hear the proper pronunciation if you google the phrase online.

The Japanese often remove their shoes when entering a home or restaurant. Heron says when it is expected to remove your shoes, it will be apparent. When you do take your shoes off there is usually a set of slippers they’ll give you. Heron notes that in a traditional restaurant this will get you from the entrance to the tatami mats where you will remove your slippers before sitting down in your socked feet. Most of these restaurants will also have a second set of slippers for the washrooms. Be sure to remove the washroom slippers and put your restaurant slippers back on before returning to your tatami mat.

Follow me, Larry Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

For more info on the World Parkinson Congress head to www.WPC2019.org

Facebook: Facebook.com/WorldPDCongress/

Twitter: @WorldPDCongress

YouTube: WorldPDcongress

Instagram: @worldpdcongress

Thank you to:

David Sangster, Ambassador to WPC2019

Dr. Simon Stott, Deputy Director of Research at The Cure Parkinson's Trust and Science of Parkinson’s

James Heron, Executive Director of Japanese Canadian Cultural Centre

One of the exciting areas of research as it pertains to understanding Parkinson’s disease is in genetics.

Dr. Matt Farrer is a Geneticist at the Djavad Mowafaghian Centre for Brain Health. In 2004, he found the first genetic connection to Parkinson’s, LRRK2, and his team has sincee identified about dozen others. Dr. Farrer is the first to admit Parkinson’s is not a genetic condition, but as with everything biological there is a genetic component, “The genetic component in Parkinson’s is 27%. That’s the variability in the condition that can be attributed to a genetic cause.” He explains that most people don’t have a clear cut passing of inheritance down the family line from their parents to them, for example. It does happen sometimes, but those families are pretty rare. Dr. Farrer is looking for unequivocal answers. He wants to know what the issue is from a molecular point of view down to a single protein. Once that is determined, Farrer and his team work backs to find out what that protein is doing in a cell, what that cell is doing in a brain and how the mutation discovered leads to disease. “The whole goal is to predict and prevent,” Dr. Farrer says when asked about the chances of a cure. “Cure is a difficult term. I would like to prevent symptoms from progressing. I would like to slow down or halt the disease in people who already have a diagnosis. I would like to prevent it in subjects who may be destined, for example, because of their genetics.”

In Kyoto, Dr. Farrer will be discussing new insights into the function of LRRK2 from a genetic point of view. The information may be a bit heady for folks who aren’t researchers, but if you’re interested, Dr. Farrer encourages you not to be intimidated by esoteric terms he may use. Farrer concludes, “Everyone’s coming to Kyoto anyway, it is a strange place for many, but it’s a wonderful place. Get immersed in it.” 

There are quite a few shout-outs to how beautiful Kyoto is. accessible.com/city/kyoto.htm">Here is a list of attractions that are listed by level of accessibility, which will help you plan which sites might be a best fit for your ability to get around the city.

There is a magazine called Fokus. It’s like Sweden’s Time Magazine. riggare-is-swede-of-the-year-in-medicine.html">Fokus’ 2018 Swede of the year in medicine was Sara Riggare. She was diagnosed with Parkinson’s in 2003. 18-years after her first symptoms first appeared. Riggare, co-chair of the Patients Advocate Committee for WPC2019, is self-described as a Parkinson’s “im”-patient. A chemical engineer by trade, she returned to school and is a PhD candidate researching digital self-care for Parkinson’s. Riggare is a proponent of making use of the possibilities of technology and the World Wide Web to benefit individuals with Parkinson’s and empower them with knowledge. “From doing that,” Riggare says, “I learned to observe my body more consciously and I think I’m more attuned to how my body works and the medication effects it.”

Each episode of the WPC2019 Podcast, I’m going to check in with James Heron, the Executive Director of the Japanese-Canadian Cultural Centre to teach us a new word or phrase and help us better understand the culture so we can avoid embarrassing ourselves or offending our hosts.  

When you are sitting down to eat or just before you eat, Heron explains that Japanese people will say, “itadakimasu” which is comparable to “Let’s eat” or “Bon appétit.” A pronunciation can be listened to if you google these phrases online.  When it comes to chop sticks, Heron suggests you practice before arriving, but if you are having troubles it is perfectly acceptable to ask for a spoon or a fork. “The important thing with chop sticks,” Heron cautions, “is not to stick them upright in your rice. That is something that is actually part of the funeral ritual.” Also, you should never pass food with your chop sticks and only use the ends of chop sticks that are not going in your mouth to take food off a shared plate. Heron also shared some notes regarding specific foods. When eating noodles, he says, it is okay to slurp. Sushi can be eaten with chopsticks, but is often a hand food. He says the Japanese do not pour soy sauce over anything and they only dip the fish side of the sushi into it, never the rice.

Follow me, Larry Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

For more info on the World Parkinson Congress head to www.WPC2019.org

Facebook: Facebook.com/WorldPDCongress/

Twitter: @WorldPDCongress

YouTube: WorldPDcongress

Instagram: @worldpdcongress

Thank you to:

Dr. Matt Farrer, Geneticist at Djavad Mowafaghian Centre for Brain Health

Sara Riggare, co-chair of the Patients Advocate Committee for WPC2019. She’s blogging here.

James Heron, Executive Director of Japanese Canadian Cultural Centre  

After he was diagnosed with Parkinson’s, Tim Hague Sr. won the first season of “The Amazing Race Canada” and wrote a book called Perseverance: The Seven Skills You Need to Survive, Thrive and Accomplish More Than You Ever Imagined. In this episode, Tim and I chat about diagnosis, acceptance, finding balance, asking for help, building a community and why it is important for people with Parkinson’s to have a mindset of an athlete.

Then we talk to Elaine Book, a social worker at the Pacific Parkinson’s Research Centre in Vancouver, BC. She’s involved with the Care Partner Lounge and will be speaking at the WPC about the impacts of Parkinson’s on children in the house.

Then I check in with James Heron, the Executive Director of the Japanese-Canadian Cultural Centre to teach us the phrase Yoroshiku onegaishimasu, which means please treat me in a favorable manner. But, it can also mean ‘how are you?” It’s used particularly in a first meeting or when asking someone for a favour. A key thing to keep in mind when saying phrases in Japanese is to be sincere, speak slowly, and be polite. Simply making the attempt to speak Japanese will be appreciated.

You can read more info in this Global News article https://globalnews.ca/news/5048608/when-life-gives-you-parkinsons-podcast-positive-impacts/ 

Follow me, Larry Gifford Twitter: @ParkinsonsPodFacebook: Facebook.com/ParkinsonsPodInstagram: @parkinsonspodFor more info on the World Parkinson Congress head to www.WPC2019.orgFacebook: Facebook.com/WorldPDCongress/ Twitter: @WorldPDCongressYouTube: WorldPDcongress Instagram: @worldpdcongress Thank you to:Tim Hauge Sr., Author of Perseverance: The Seven Skills You Need to Survive, Thrive and Accomplish More Than You Ever ImaginedElaine Book, Social worker at Pacific Parkinson’s Research CentreJames Heron, Executive Director of Japanese Canadian Cultural Centre  

In June, I will be traveling to Kyoto, Japan for the 5th World Parkinson Congress (WPC). WPC is a global Parkinson's event that opens its doors to all members of the Parkinson's community, from neurologists and researchers to those living with the disease.  Since my diagnosis in August 2017, I’ve launched the podcast When Life Gives You Parkinson’s. As an extension of that podcast, I have teamed up with the World Parkinson Coalition to help preview WPC2019. 

In this episode, Jill Ames-Carson, the co-chair of the ambassadors program, can’t say enough good things about the congress, “The World Parkinson Congress changed my whole life and how I live with Parkinson’s. It gets everybody ‘Parkinsons’ in the same room together. Which is an absolutely amazing feeling, because you know you’re not alone.” She suggests those planning to attend review the program online or download it, before landing in Kyoto. The thermometer next to each session indicates the level of scientific discussion. The other symbols let you know whether it's a basic science, clinical science, or comprehensive care “As a person with Parkinson’s I would really advise you to attend things you’re interested in.”

Dr. A Jon Stoessl, the co-chair of WPC2019, agrees noting some of the presentations will be very scientific, “It’s important for the meeting to be a top-notch scientific meeting and we truly believe that it is and so there are sessions that are targeted really only towards scientists.”  This year, among the world renowned researchers and neurologists there will be a Nobel Prize winner.

In our discussion, Dr. Stoessl mentioned the Pre-Congress Courses. These are full day courses that take place Tuesday, June 4. You can see what is being offered by visiting this page on WPC2019.org website.

Both, Dr. Stoessl and Ms. Ames-Carson talked about pacing yourself. There is a lot to do, but if you have Parkinson’s, you will want to build in down time. If you need a break from sitting through educational sessions, the WPC has a variety of spaces where you can recharge or get some exercise. You can learn more about that on the wellness page of the website. 

As you prepare for your trip, Ames-Carson suggests you pack a pen, a pad of paper, and some small gifts from your home country to offer to new friends you’ll meet. The WPC offers other tips in its online Travel Tool Kit.

Each episode of the WPC2019 Podcast, I’m going to check in with James Heron, the Executive Director of the Japanese-Canadian Cultural Centre to teach us a new word or phrase and help us better understand the culture so we can avoid embarrassing ourselves or offending our hosts. This week we start with a simple hello. But, it’s not so simple. Depending on the time of day, the Japanese have three different greetings.

In the morning until around 11a, the full formal greeting is Ohayô gozaimasu. Informally you can also use Ohayô. In the midday from about 10a-5p, the appropriate greeting is Konnichiwa. In the evening, Konbanwa, is the greeting that is most invoked.

Pronunciations can listened to if you google these phrases online. A key thing to keep in mind when saying phrases in Japanese is to be sincere, speak slowly, and be polite. Simply making the attempt to speak Japanese will be appreciated.

Heron also notes that silence is an important part of the communication approach. The Japanese have a saying that goes, “words separate and silence unifies.” Citing studies by other linguists, Heron cautions us that North Americans are less comfortable with the amount of silence we allow to pass in conversation before feeling a need to fill the void. In Japan, the acceptable amount of silence is over four seconds, but for North Americans after three-quarters of a second we begin to feel a sense that the communication is dying and we need to say something. If we fill those silences too quickly, we muddy the communication waters.

Follow me, Larry Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

For more info on the World Parkinson Congress head to www.WPC2019.org

Facebook: Facebook.com/WorldPDCongress/

Twitter: @WorldPDCongress

YouTube: WorldPDcongress

Instagram: @worldpdcongress

Thank you to:

Jill Ames Carson, co-chair of World Parkinson Congress Ambassador’s Program 2019

Dr. A. Jon Stoessl, co-chair of World Parkinson Congress 2019   

James Heron, Executive Director of Japanese Canadian Cultural Centre  

Credits

Dila Velazquez – Story Producer

Rob Johnston – Senior Audio Producer

John O’Dowd – Content Producer

I’m a fairly hopeful guy. Sure, I have dark moments as we all do but, hope wins out more often than not. You might be wondering how I can have hope or be hopeful while dealing with an incurable, progressive brain disease like Parkinson’s. It’s a fair question. I don’t know that I have the answers, but in this episode I go about searching for a better understanding of the role that hope plays in the Parkinson’s community. What I discover is that hope is the one driving force that binds us all together. No matter if you are a person with Parkinson’s, a caregiver, a nurse, neurologist, physiotherapist, counselor, general practitioner or a support group leader we are all dealing in hope.

Dr. Matt Farrer is a Professor of Medical Genetics and Molecular Neuroscience at Pacific Parkinson’s Research Centre at the University of British Columbia. He is agenetic researcher who hopes his work will eradicate Parkinson’s. Last year, he mapped my genome and is set to reveal the results of those tests in this episode of the podcast. I also talk to Wendy Edey, a facilitator of Hope at “Hope Studies Central” at the University of Alberta, who has studied the impacts of hope as it relates to Parkinson’s disease. She says, “When you have hope you have the capacity to think about the future and be okay.”

Someone who embodies the power of hope in my eyes is the Reverend Dixie Black. The Deacon of Christ Church Cathedral in Vancouver has been living with a Parkinson’s diagnosis since 2013. “Hope means to me trust. Trust that however it goes, I’m not alone and I’ll be taken care of.”

In the episode we talk about hope as a common denominator to science and spirituality, we explore the concept of hope, where to find hope, how to keep it and the role it plays in the living our best lives despite the Parkinson’s diagnosis.

I hope you listen.

Follow me, Larry Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Follow Co-host and Producer Niki Reitmeyer

Twitter: @Niki_Reitmayer

Thank you toDrMatt Farrer and the staff at the Djavad Mowafaghian Centre for Brain Health https://www.centreforbrainhealth.ca/. Follow the Centre for Brain Health on Twitter at @DMCBrainHealth. 

Wendy Edey, Facilitor of Hope at “Hope Studies Central” https://sites.google.com/a/ualberta.ca/hope-studies/home

Reverend Dixie Black, Deacon of Christ Church Cathedral in Vancouver. Read and listen to her sermons here.

And special thanks to my wife Rebecca Gifford.

For more info on our partner Parkinson Canada head to http://www.parkinson.ca/

The toll free hotline is 1-800-565-3000

Or follow them on Twitter

Parkinson Canada            @ParkinsonCanada

Parkinson Society BC      @ParkinsonsBC

Credits

Dila Velazquez – Story Producer

Rob Johnston – Senior Audio Producer

This is a special bonus episode of When Life Gives You Parkinson’s which we are calling “Extra Dosage.” Full episodes will be release every other Wednesday. In between, Niki and I will share new information, original interviews and extra material that provide more context to topics raised in the previous episodes of the podcast. We’ll also answer your questions. Feel free to write us with questions at parkinsonspod@curiouscast.ca.

I was diagnosed with Parkinson’s in August 2017. I haven’t seen my brothers Bruce and Dan or my sister Tracy since I received the news. That changed on January 31, 2019. Our Mom, who lives in Florida, invited us all down to stay in a beach house on Anna Marie Island on the Gulf Coast near Tampa. My siblings arrived separately along with some of their kids who now have their own kids. There were 18 of us in total.

I was nervous.

We haven’t vacationed together in 20 years. When we do get together for holidays or special events it is separated by years and we’re only together for a few hours at a time. And still, inevitably, someone ends up crying.

But even before the family reunion part, I was nervous about flying. Vancouver B.C. to Tampa, Florida with a stop in Minneapolis, Minnesota is a long stretch of flying. I was concerned about timing my medication correctly as we skipped through time zones. I was certain my feet and legs would cramp and stiffen on the flight. This would be my first time traveling with walking sticks. And what if I start to tremor? What if I have an anxiety attack in the airport? What if…

Deep breath.

I can tell you now the anticipation was far more anxious than the trip. Everything was great.

Here’s how I handled the airport.

I wanted to be comfortable and confident, so I wore layers of loose fitting clothing including a shirt with a pocket for easy access to my passport and boarding pass. I used a backpack for carry-on items including a book, phone chargers, water, healthy snacks, and lots of Levodopa. (Do not pack your meds in checked baggage. I was happy to have it with me when we ran into seven hours of delays on our return trip.) Anytime I am in crowds, I use my walking sticks, so they came along for the ride too.

When we checked in at the airline counter, I alerted them that I have Parkinson’s and would like to have a wheel chair or golf cart assistance at my layover in Minneapolis. I wanted to make sure I made the connection and didn’t exhaust myself traversing through four concourses. I also traveled with my wife and son, which gave me extra eyes and ears and peace of mind if I lost focus or became disoriented maneuvering the airport hallways and crowds. We always opted to pre-board to take extra time to get on board and get settled.

Once on the plane, I sat in the aisle seat to give myself quick access to stand up if I started to feel cramping or an urgent need to use the facilities. I collapsed my walking sticks and put them in the overhead storage. I stretched my feet and legs as much as possible during the flight and drank water to stay hydrated. The days we flew were long days, and my pill schedule was out of whack a bit, but I was able to take it in stride and slept like a baby each of those nights.

The reunion was great. Lots of stories, laughter and reconnecting. On this episode, you’ll hear more of my journey to Florida including a stop at Universal Studios and our attempt to get an Attraction Assistance Pass (AAP) to avoid long lines and a discussion with my brothers, sister and me. I ask them what it’s like seeing me in the flesh with Parkinson’s, how PD has impacted them and their families, and we try to recalibrate our relationships with each other. They also pepper me with a couple behind the scenes podcast questions you might enjoy. 

If you have a comment or question about the podcast, you can email us:parkinsonspod@curiouscast.ca

Follow me, Larry Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Follow Co-host and Producer Niki Reitmayer

Twitter: @Niki_Reitmayer

Special thanks to Bruce Gifford, Dan Gifford, Tracy Cherry, Marty Gifford, and Rebecca Gifford

For more info on our partner Parkinson Canada head to http://www.parkinson.ca/

The toll free hotline 1-800-565-3000

Or follow them on Twitter

Parkinson Canada            @ParkinsonCanada

Parkinson Society BC      @ParkinsonsBC

Credits

Dila Velazquez – Story Producer

Rob Johnston – Senior Audio Producer

In this episode of When Life Gives You Parkinson’s we explore the role of the caregiver. Seeing as I’m a person with Parkinson’s and not a caregiver, my caregiver and wife Rebecca is featured prominently along with my co-host Niki Reitmayer and other caregivers Noel MacDonald and John Parkhurst. At the end of the episode, I chime in with a quick interview with Dr. Robert Duff about what caregivers need to do to make sure they’re taking care of themselves. At the end of the episode, Niki mentions a few resources for caregivers from Parkinson Canada which can be found here:

Caregiving Webinar https://vimeo.com/168664929

Caregiver “Am I in Balance?” worksheet I-in-balance-taking-care.pdf">https://www.parkinson.ca/wp-content/uploads/Am-I-in-balance-taking-care.pdf

Aside from being a wife, caregiver, mom, home school teacher, family chef and chauffeur, Rebecca is a writer. In fact, she’s a great writer. This week, for the podcast notes, I invited her to put pen to paper to express in her own words what it means to be a caregiver to someone with Parkinson’s.

The following is written by Rebecca Gifford, caregiver and wife of Larry Gifford

It happens all the time, all over the world. Two people love each other. You build a relationship, a partnership, and ultimately share a commitment and a life. You grow and make plans, hopeful for the future. Somewhere in the back of your head you know that something could happen that feels like the universe having a good chuckle at your expectations. It’s easy to dismiss these thoughts as “not right now” or “perhaps when we’re older.”

Then one day you hear a faint belly laugh.

One of you is diagnosed with something frightening, and everything changes. Of course everything shifts for the person with the disease, but the changes are as profound for those closest to them.

Just as all families who are faced with a diagnosis do, we discovered a new path the day Larry was diagnosed with Parkinson’s disease. As his partner and wife, when it appeared before me I took his hand so we can walk it together.

Sometimes it is joyful and beautiful—the opportunity to tell our story, to make a difference and connect with a remarkable community; the opportunity to offer life-shaping lessons to our son; a chance to clarify, simplify and rebalance our life.

Sometimes it is sad or infuriating or frightening—grieving our pre-PD life, seeking balance in an ever-changing situation, adjusting to Larry’s uneven physical and energetic capacities, shifting the balance of our parenting roles, and facing endless uncertainty. Larry and I are reexamining and redefining our roles in our marriage, knowing we likely will need to do this again and again as the disease progresses. We are re-prioritizing our daily lives, while also discovering that often self-care means we can’t meet the expectations of those around us, including each other. And on and on.

Those who have been partners of people with Parkinson’s for much longer than I have know that the above lists will get much longer before the food truck pulls away. For us and so many, the growing pains are real.

We all know that everyone’s journey is different. But as partners and most trusted caregivers, we have a front row seat for our loved one’s experience. We may not be experiencing the disease directly, but we have an important role. We aren’t just helpers, healers and emotional support. We are the witnesses, the observers. We see their highs and lows, are inspired by their strength and humor, and are empathetic to their worries and grief. We are sitting beside them as they drive the rollercoaster, an extra pair of eyes and ears on the track. This can be just as challenging, but also just as enlightening.

We can and are supporting them and choosing the spot beside our dear ones. Our journey isn’t easy, but it’s full of all the thrills and lessons that a rich life brings.

Follow me, Larry Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Follow Co-host and Producer Niki Reitmeyer

Twitter: @Niki_Reitmayer

Thank you to Noel MacDonald, Marty Gifford, John Parkhurst,

Dr. Robert Duff from The Hardcore Self Help Podcast

Website: https://www.duffthepsych.com

You Tube: https://www.youtube.com/duffthepsych

Twitter:https://twitter.com/DuffThePsych

Facebook: https://www.facebook.com/duffthepsych/

Instagram: http://www.instagram.com/duffthepsych

And special thanks to my wife and caregiver Rebecca Gifford.

For more info on our partner Parkinson Canada head to http://www.parkinson.ca/

The toll free hotline is 1-800-565-3000

Or follow them on Twitter

Parkinson Canada            @ParkinsonCanada

Parkinson Society BC      @ParkinsonsBC

Credits

Dila Velazquez – Story Producer

Rob Johnston – Senior Audio Producer

This is a special bonus episode of When Life Gives You Parkinson’s which we are calling “Extra Dosage.” Full episodes will be release every other Wednesday. In between, Niki and I will share new information, original interviews and extra material that provide more context to topics raised in the previous episodes of the podcast. We’ll also answer your questions. Feel free to write us with questions at parkinsonspod@curiouscast.ca.  

Parkinson’s doesn’t necessarily lead to cognitive impairment, but it can. The threat alone though makes  think that every time I forget a word, have trouble with complex issues or can’t complete my Sudoku that I might be leaking brain power. Likely, I’m just freaking myself out. However, for peace of mind, there are ways to monitor and test cognitive function. I know in one my less grounded moments of perceived cognition erosion, my neurologist ran me through a battery of memory exercises. I checked out fine.

Additionally, there neuropsychologists who work with neurologists to help evaluate cognitive abilities. Dr. Robert Duff, host of the Hard Core Self Help podcast, is a neuropsychologist who works with Parkinson’s patients on a regular basis. In this Extra Dosage, Dr. Duff and I speak candidly about Parkinson’s possible impact on the brain, mental health issues with Parkinson’s, what people can expect if going through a battery of neuropsych tests, and what he’s learned about PD after treating hundreds of patients. Additionally, he explains why it might be beneficial for everyone with Parkinson’s to take up a new hobby.  

If you have a comment or question about the podcast, you can email us: parkinsonspod@curiouscast.ca

Follow me, Larry Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Follow Co-host and Producer Niki Reitmeyer

Twitter: @Niki_Reitmayer

Special thanks to Dr. Robert Duff from The Hardcore Self Help Podcast

Website: https://www.duffthepsych.com

You Tube: https://www.youtube.com/duffthepsych

Twitter: https://twitter.com/DuffThePsych

Facebook: https://www.facebook.com/duffthepsych/

Instagram: http://www.instagram.com/duffthepsych

For more info on our partner Parkinson Canada head to http://www.parkinson.ca/

The toll free hotline 1-800-565-3000

Or follow them on Twitter

Parkinson Canada            @ParkinsonCanada

Parkinson Society BC      @ParkinsonsBC

Credits

Dila Velazquez – Story Producer

Rob Johnston – Senior Audio Producer

In this episode, Niki and I talk to my colleagues and bosses about how their adjusting to my PD diagnosis, get advice from my neurologist Dr. Jonathon Squires, Neuropsychologist Dr. Robert Duff, and employment lawyer Lior Samfiru. I also chat with Jim Redmond about being a teacher with PD and Jonny Acheson about adjustments he’s had to make as an emergency room doctor who was diagnosed with Parkinson’s.

Follow me, Larry Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Follow Co-host and Producer Niki Reitmeyer

Twitter: @Niki_Reitmayer

Thank you to Kathryn Stewart, Dustin Collins, Dr. Jonathon Squires, Jim Redmond, Jonny Acheson, and Troy Reeb.

Also Thank you to @SickboyPodcast – check them out here http://sickboypodcast.com/

Follow them on Twitter

Brian Stever                     @SteverBrian

Taylor MacGillvary           @Taymacgillivary

Jeremie Saunders           @JeremieSaunders

Dr. Robert Duff from The Hardcore Self Help Podcast

Website: https://www.duffthepsych.com

You Tube: https://www.youtube.com/duffthepsych

Twitter:https://twitter.com/DuffThePsych

Facebook: https://www.facebook.com/duffthepsych/

Instagram: http://www.instagram.com/duffthepsych

Lior Samfiru B. A. (hons.), LL.B., partner Samfiru Tumarkin LLP

Website: www.stlawyers.ca  

Twitter: https://twitter.com/stlawyers

And special thanks to my wife Rebecca Gifford.

For more info on our partner Parkinson Canada head to http://www.parkinson.ca/

Here is a link to an article about Young Onset Parkinson’s which also discusses employment

The toll free hotline is 1-800-565-3000

Or follow them on Twitter

Parkinson Canada            @ParkinsonCanada

Parkinson Society BC      @ParkinsonsBC

Credits

Dila Velazquez – Story Producer

Rob Johnston – Senior Audio Producer

This is a special bonus episode of When Life Gives You Parkinson’s which we are calling “Extra Dosage.” Full episodes will be release every other Wednesday. In between, Niki and I will share new information, original interviews and extra material that provide more context to topics raised in the previous episodes of the podcast. We’ll also answer your questions. Feel free to write us with questions at parkinsonspod@curiouscast.ca.

One of the main intentions behind this podcast was to demystify the Parkinson’s experience by sharing my story, the stories of people I meet along my journey and encourage others to share their Parkinson’s stories.  When we share stories, we raise awareness of Parkinson’s, which attracts more donor dollars, to do more research, which hopefully one day will lead to finding a cure. I am encouraged from the responses I have received and am happy to report that as a community, those of us with Parkinson’s are sharing more of what we’re going through.

To that end, in this Extra Dosage episode, I want to introduce you to Jim Richmond. Jim, 47, is a high school teacher and volleyball coach. He was diagnosed three years ago. Even though we are the same age and have some similar experiences, our stories are uniquely our own. I chat with Jim about symptoms, treatments, lifestyle changes, and everyday efforts to keep the disease from taking hold. After our conversation, Jim emailed to say he thought in our discussion he came across as more negative than his typical positive self. To me his story is authentic, honest and like most of us with Parkinson’s an ever adjusting mix of hope, fear, frustration and Levodopa.    

If you have a comment or question about the podcast, you can email us: parkinsonspod@curiouscast.ca

Follow me, Larry Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Follow Co-host and Producer Niki Reitmeyer

Twitter: @Niki_Reitmayer

Thank you to Jim Redmond.

For more info on our partner Parkinson Canada head to http://www.parkinson.ca/

The toll free hotline 1-800-565-3000

Or follow them on Twitter

Parkinson Canada            @ParkinsonCanada

Parkinson Society BC      @ParkinsonsBC

Credits

Dila Velazquez – Story Producer

Rob Johnston – Senior Audio Producer

In this episode, you will meet my 9-year old son Henry, hear his infectious laugh and find out the one burning question he has about Parkinson’s. I think Henry might just want a normal Dad, not one with Parkinson's , my co-host Niki Reitmayer and my wife Rebecca try to convince me otherwise.

On Saturdays,  Henry and I go on adventures. We hang out, run errands, laugh, talk, and just spend time together. Father-son time means even more for me since my Parkinson’s diagnosis. I don’t always have the energy or ability to do the things we used to do and that will only get worse over time, so when we get the chance to connect, I relish it.

Parenting is hard regardless if you have Parkinson’s or not. Parky can make things harder, however, it also allows me to demonstrate how I deal with adversity, teaches Henry empathy, the importance of philanthropy, and the value of quality time over quantity time.

You will also hear from fellow father with PD Jonny Acheson about how he talks to his kids about Parkinson’s and how PD has changed how he approaches parenting. Singer Songwriter Emily Chambers was 12-years old when her dad was diagnosed and TeaParky.com creator Michael Chueng was 11. They both talk about what it was like to grow up with a Dad who has Parkinson’s and offer advice to my son Henry.

Wondering how to talk to kids about Parkinson's? Check this link out to-Children.pdf">https://www.parkinson.ca/wp-content/uploads/Talking-to-Children.pdf 

Follow me, Larry Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Follow Co-host and Producer Niki Reitmeyer

Twitter: @Niki_Reitmayer

Thank you to Dan Gifford, Tracy Cherry, Jonny Acheson, and…

Emily Chambers. You can check out her music at www.emilychambers.caand follow her for future alerts about “Shake, Shake, Shake.”

You Tube: https://www.youtube.com/emilychambersmusic

Twitter: https://twitter.com/em_chambers

Facebook: https://www.facebook.com/emilychambersmusic

Instagram: https://www.instagram.com/em_chambers/

Michael Chueng. Check out his site www.teaparky.comand follow him.

Twitter: https://www.instagram.com/teaparkydotcom/

Facebook: https://www.facebook.com/TeaParky/

Instagram: https://www.instagram.com/teaparkydotcom/

And special thanks to my son Henry and to my wife Rebecca Gifford.

For more info on our partner Parkinson Canada head to http://www.parkinson.ca/

The toll free hotline is 1-800-565-3000

Or follow them on Twitter

Parkinson Canada            @ParkinsonCanada

Parkinson Society BC      @ParkinsonsBC

Credits

Dila Velazquez – Story Producer

Rob Johnston – Senior Audio Producer

This is a special bonus episode of When Life Gives You Parkinson’s which we are calling “Extra Dosage.” Full episodes will be release every other Wednesday. In between, Niki and I will share new information, original interviews and extra material that provide more context to topics raised in the previous episodes of the podcast. We’ll also answer your questions. Feel free to write us with questions at parkinsonspod@curiouscast.ca.

‘Twas the night before Christmas and all through the home

One creature was stirring, it was Dad on his phone.

Alone in the living room at half past three,

Parkinson’s awoke him with an urge to pee.

The kid was restless and then crashed in his bed,

Visions of new race cars zoomed through his head.

Mom awoke to a clatter, in bed all alone,

She recognized the noise as Dad’s cramping foot moan. 

He tremored and shook down his arms and his legs,

Anticipating breakfast and Christmas casserole eggs.

Levodopa was downed and he stretched to the sky.

He exercised reluctantly and let out a big sigh.

While he was distracted, Santa sneaked in.

Gifts were distributed by the tree with a grin.

And then, after breakfast, they begin to unwrap

Dad looks off in the distance, ready to nap.  

Christmas is full of love and tradition,

Enjoyable for all, despite Dad’s Parkinson condition.

A heartfelt Merry Christmas from the whole gang at When Life Gives You Parkinson’s. We’ll be back on January 8th will a new full episode of the podcast focusing on Parkinson’s and Fatherhood.

If you have Parkinson’s there are few things our friends at The Michael J. Fox Foundation and Parkinson Canada recommend you consider over the holidays.

• Do not forget to exercise. Keeping active will help boost your spirits and keep your sleep schedule intact.
• Take your medication as prescribed. This is especially difficult and confusing when you cross time zones. When traveling take an updated copy of your medication list and bring medications in their bottles in your carry-on when flying.
• Mind your diet. A healthy Parkinson’s diet is full of fruit and vegetables. Candy and cookies are tempting treats, and family dinners make is easy to overdo it on food and wine. As with everything, moderation is the key. Drink lots of water and remember your balance issues will only increase with alcohol consumption.

If you have a comment or question about the podcast, you can email us: parkinsonspod@curiouscast.ca

Follow me, Larry Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Follow Co-host and Producer Niki Reitmeyer

Twitter: @Niki_Reitmayer

Thank you to my wife Rebecca and son Henry.

For more info on our partner Parkinson Canada head to http://www.parkinson.ca/

The toll free hotline 1-800-565-3000

Or follow them on Twitter

Parkinson Canada            @ParkinsonCanada

Parkinson Society BC      @ParkinsonsBC

Credits

Dila Velazquez – Story Producer

Rob Johnston – Senior Audio Producer

In this episode of When Life Gives You Parkinson’s, I talk to people behind several Parkinson’s fundraisers, learn about their experiences with the disease and meet the researchers who benefit from the funds raised. I also let you follow me into Dr. Farrer’s lab as I donate my DNA.

Follow me, Larry Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Follow Co-host and Producer Niki Reitmeyer

Twitter: @Niki_Reitmayer

Thank you to:

Emily Chambers. You can check out her music at www.emilychambers.ca and follow her for future alerts about “Shake, Shake, Shake.”

You Tube: https://www.youtube.com/emilychambersmusic

Twitter: https://twitter.com/em_chambers

Facebook: https://www.facebook.com/emilychambersmusic

Instagram: https://www.instagram.com/em_chambers/

Michael Chueng. Check out his site www.teaparky.com and follow him.

Twitter: https://www.instagram.com/teaparkydotcom/

Facebook: https://www.facebook.com/TeaParky/

Instagram: https://www.instagram.com/teaparkydotcom/

For details on Porridge for Parkinson’s and The Pacific Parkinson’s Research Institute www.pacificparkinsons.org and follow them.

Twitter: https://twitter.com/PPRI__

Facebook: https://www.facebook.com/PacificParkinsons/

Drs. Matthew Farrer, Silke Cresswell, and A. Jon Stoessl at the Djavad Mowafaghian Centre for Brain Health https://www.centreforbrainhealth.ca/. Follow the Centre for Brain Health on Twitter at @DMCBrainHealth. 

Dr. Farrer’s researchers Jesse Fox and Emil Gustavason.

And special thanks as always to my wife Rebecca Gifford.

For more info on our partner Parkinson Canada head to http://www.parkinson.ca/

The toll free hotline is 1-800-565-3000

Or follow them on Twitter

Parkinson Canada            @ParkinsonCanada

Parkinson Society BC      @ParkinsonsBC

Credits

Dila Velazquez – Story Producer

Rob Johnston – Senior Audio Producer

This is a special bonus episode of When Life Gives You Parkinson’s which we are calling “Extra Dosage.” Full episodes will be release every other Wednesday. In between, Niki and I will share new information, original interviews and extra material that provide more context to topics raised in the previous episodes of the podcast. We’ll also answer your questions. Feel free to write us with questions at parkinsonspod@curiouscast.ca.

The appendix. Until November 1, 2018, I didn’t know it served a purpose in the human body.  Global Newsand other news outlets around the world reported on an exciting research discoverythat people who had their appendix removed early in life had a lower risk of getting Parkinson’s later in life.

After some research of my own I discovered the appendix actually helps the immune system detect and eliminate harmful microorganisms, while regulating gut bacteria.

What’s the connection to Parkinson’s? Well, it turns out a healthy appendix contains alpha-synuclein. Alpha-synuclein is the key protein that builds up in the brains of people with Parkinson’s.

The news about the appendix and Parkinson’s further confirms much discussed theories that there is a direct connection between gut health and brain health.

One of the researchers focused on better understanding the importance of gut health and our microbiome as it relates to Parkinson’s disease is Dr. Silke Cresswell. She is an assistant professor in the division of Neurology at UBC. In this Extra Dosage episode of When Life Gives You Parkinson’s I sat down with her at the Djavad Mowfaghian Centre for Brain Health at UBC for the Pacific Parkinson’s Research Centre. We discuss microbiome, the appendix, diets, constipation and what she’s uncovered in her research.

If you have a comment or question about the podcast, you can email us: parkinsonspod@curiouscast.ca

Follow me, Larry Gifford 

Twitter: @ParkinsonsPod

Facebook: Facebook.com/ParkinsonsPod

Instagram: @parkinsonspod

Follow Co-host and Producer Niki Reitmeyer

Twitter: @Niki_Reitmayer

Thank you to Dr. Silke Cresswell and the Djavad Mowfaghian Centre for Brain Health at UBChttps://www.centreforbrainhealth.ca/. Follow the Centre for Brain Health on Twitter at @DMCBrainHealth. 

For more info on our partner Parkinson Canada head to http://www.parkinson.ca/

The toll free hotline 1-800-565-3000

Or follow them on Twitter

Parkinson Canada            @ParkinsonCanada

Parkinson Society BC      @ParkinsonsBC

Credits

Dila Velazquez – Story Producer

Rob Johnston – Senior Audio Producer