When Life Gives You Parkinson’s podcast: Shaking stereotypes

I am in Kyoto, Japan for the 5th World Parkinson Congress (WPC). WPC is a global Parkinson’s event that 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 3: young people, women and people of all colours are being diagnosed with Parkinson’s disease.

In this special on-location episode of When Life Gives You Parkinson’s, we have a roundtable discussion surrounding the frustrations concerning the old, white, male stereotypes.

Treating Parkinson’s the same way with the same drugs no matter your gender, age or ethnicity — let alone your dominate symptoms — leads to delayed diagnosis and prescribing inadequate pharmaceuticals. A 2019 attitude and individualized approach to each person’s Parkinson’s is desperately needed, and the whispers of past WPCs are becoming a roar that the Parkinson’s community will soon be unable to ignore any longer.

Jim Smerdon, a person with Parkinson’s from Vancouver, B.C., noticed how indiscriminate the disease 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,” Smerdon says.

Tweet This Click to share quote on Twitter: "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," Smerdon says.

A perfect example of just how diverse Parkinson’s patients can be was highlighted by one of Omotola Thomas’ doctors in South Africa.

According to Thomas, doctors 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 has 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. Doctors took blood and ran every test they could think of, but because she was the opposite of old, white and male, Parkinson’s wasn’t initially considered. It took six years, seemingly endless tests and a move to South Africa and then to the U.K. before she was diagnosed with Young Onset Parkinson’s disease 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 Parkinson’s. It appears in Wikipedia and pops up anytime anyone googles “Parkinson’s disease.”

Another suggestion, which was a hot topic in the morning session at WPC, is to begin to address the needs and differences that exist between women and men with Parkinson’s. Thomas, and women like her, have a different Parkinson’s experience. For instance, their Levodopa-Carbidopa medications to control Parkinson’s symptoms only work 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 says. “I don’t think that’s something you experience.”

She’s right — I don’t.

Also on this episode, kids and care partners play a prominent role in the topics and discussions at World Parkinson Congress.

Thank you to our guests this week:

Omotola Thomas, person with Parkinson’s from the United Kingdom

Jim Smerdon, person with Parkinson’s from Vancouver, B.C.

Andy McDowell, person with Parkinson’s from Auckland, New Zealand

Lily and Pearl McDowell, children of Andy

Andrew Davenport, board member, Parkinson Society of British Columbia

Rebecca Gifford, partner in Parkinson’s from Vancouver, B.C.

Contact 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

When Life Gives You Parkinson’s was selected as one of Apple’s best podcasts of 2018. 

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