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.
In this special on-location episode of When Life Gives You Parkinson’s, we discuss the role of advocacy in Parkinson’s, especially as it relates to wellness and research.
Opening ceremonies for the World Parkinson Congress 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. Isaacs was full of hope, humour and optimism despite his Parkinson’s diagnosis. He died suddenly in 2017. His wife, Lyndsey Isaacs, offered a real and raw insight into the care partner’s plight.
“As Tom’s Parkinson’s progressed, life got harder for everyone involved,” she said. “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 threw at us.”
It was in that dark moment that she realized it was OK to get help, and she did. It was a message that seemed to resonate with care partners in attendance and one that deserved the spotlight at WPC.
Prior to the opening ceremonies, there was a pre-congress course on activism and advocacy. In the podcast, I sit down with 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 joined the conversation, as did Invigorate Physical Therapy founder Dr. Sarah King of Austin, Texas. Two people living with Parkinson’s — Dr. Siva Shanthipriya from India and Brian Toronyi from Grand Rapids, Mich. — were also part of the discussion.
Toronyi made an impassioned plea during the course — and again on the podcast — to change the narrative around Parkinson’s. As a community, we’re quick to 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 degeneratively.
“We don’t know when we’re going to die, but it’s like a ticking time bomb,” he says.
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
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