On this episode of When Life Gives You Parkinson’s, I will introduce you to Jeanette and Barry Pynn, who 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 travelling 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 orthopedics and creams. Three years later, the whole left side of her body shut down 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 10 years after the onset of symptoms — 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?'” Jeanette said.
“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 travelled 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 that likely wouldn’t survive the next decade.
When 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 Djavad Mowafaghian Centre for Brain Health at UBC.
“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 per cent had the correct diagnosis at death.
As it relates to Parkinson’s disease, a new Parkinson’s UK study shows 25 per cent of people with Parkinson’s are misdiagnosed. A third of those were given medication for an illness they didn’t have and 10 per cent 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.
If you have a comment or question about the podcast, you can email us: parkinsonspod@curiouscast.ca
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Twitter: @Niki_Reitmayer
Special thanks to…
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
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.
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