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
Follow Co-host and Producer Niki Reitmeyer
Thank you to our special guests:
Jeanette Fisher 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.
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.