BY LINDA STARKE
“You have Parkinson’s Disease.” Four words that no one wants to hear. And quite often, a diagnosis that is a complete surprise to the person receiving it. It is a life-changing diagnosis, but not a life-threatening one.
Many people are shocked for some time after getting this news. The doctor who said I had Parkinson’s told me to go home, read all about it, and come back to see him in one year. One year! He nearly patted me on the head and said, “There’s a good girl,” as I stumbled from his office. One year? Surely I could do something about this sooner than that.
So I quickly found a monthly support group in Sidney. Comparing diagnoses, symptoms, medications and reliable information sources was a reassuring start down the Parkinson’s road. And I got the name of a highly recommended movement disorder specialist, so I never saw Dr. Condescending again.
In June 2019 someone on Salt Spring called to see if there were enough Parkys, so to speak, to start a support group here. About 25 people showed up for the initial meeting, and I volunteered to coordinate the group. Ellie Parks of Island Health has helpfully identified local professionals willing to meet with us.
The Salt Spring Parkinson’s Support Group is nearly six years old. We meet nine months of the year (skipping the summer and December), and the mailing list now has 40 names, although some people have not yet been to a meeting. But February set a new record, 19 attendees.
The meetings are for anyone living with Parkinson’s — people who have the disease as well as those who care for them. The group includes people who got diagnosed a month ago as well as a woman who was diagnosed 30 years ago. It also includes author Kathy Page, whose new book will be published by Penguin Random House in September. In This Faulty Machine is a memoir of loss and transformation due to this disease.
At our monthly meetings we share as much info as we can for newcomers. In an email entitled Gratitude, a new member just wrote to say that “the level of compassion I felt coming from the group towards me was like nothing I had felt before and that’s a lot of years. It carried me all the way home and then some.”
At the moment there is no cure for Parkinson’s, but rigorous exercise has been shown to slow the progression of the disease. One nearby group that can help with that is the nonprofit Parkinson Wellness Projects (PWP) in Victoria. PWP offers 25 in-person and Zoom exercise classes a week, counselling, education and emotional support. Classes are free, as the group is supported by donations and from grants and contributions from local businesses and foundations.
For a bigger picture, plenty of organizations, foundations and government bodies have websites full of information. The Michael J. Fox Foundation is probably the best known source. Others helping people grapple with a new diagnosis are the Parkinson Society British Columbia, the Parkinson’s Foundation and the Davis Phinney Foundation.
One of the most interesting and humorously named sources is moversandshakerspodcast.com, which started in London a few years ago. Six well-known Brits — minor celebrities, they say — got together to trade experiences with their Parkinson’s. Several of them had extensive media experience in the BBC. Also involved was a retired high court judge. They agreed to meet once a week at a pub in western London and to start a podcast with guest experts. They have already proposed a Charter for Parkinson’s Disease, which they hand-delivered to 10 Downing Street with much media attention.
The next big event for movers and shakers everywhere is World Parkinson’s Day on Friday, April 11 — the birthday of Dr. James Parkinson, who wrote about “Shaking Palsy” in 1817. Various groups will hold special events on that day and throughout April to raise awareness of the disease. This in turn should make people feel less alone when they hear those four life-changing words: “You have Parkinson’s Disease.”