April 2024 – 15 Minute of Fame

15 minutes of Fame

“Troubles overcome are good to tell” ~ Italian proverb

April is Parkinson’s Disease awareness month, so it’s fitting that a new documentary about our fastest-growing neurological disease will be broadcast April 8th. The documentary, entitled “Matter of Mind, My Parkinson’s” is part of the PBS series “Independent Lens”. I would say it’s a boffo, big-hearted, documentary about three individuals and their families meeting a serious threat with resilience and grace. A story suffused with hope that will bring a smile to the coldest critic. I would say that, but if I did it would look suspect and self-serving, as I am one of the documentary’s featured patients.

Why would we invite perfect strangers into our home to ask us personal questions about a deeply private matter, and share with them intimate thoughts about something most of us would just as soon not talk about? Because, ultimately, we have a hopeful tale to tell, and where we can spread credible, realistic hope, we should do so. Besides, experiencing novel situations is good for the brain, so this counts as therapy.

It’s hard to be patient with the pace of the search for a cure or even just more effective treatment for Parkinson’s Disease. But that search has sped up dramatically in my lifetime. Three major avenues of PD treatment have all been introduced in the last 65 or so years, two of them in just the last twenty. Levodopa therapy, Deep Brain Stimulation and the discovery of the benefits of exercise are all of relatively recent vintage, and you can see them at work in the film’s featured patients.

Especially dramatic are the moments when Juan, the owner of an optical shop, gets his Deep Brain Stimulator activated for the first time, and the images of Veronica, a petite woman, pounding the snot out of a heavy boxing bag. I do my part, riding my bicycle through the scenic hills of Eastern Washington and hooting and strutting through a snowy Alaska forest. We make having Parkinson’s look like fun!

Well… it’s not exactly all fun and games. The movie shows Veronica when her meds wear off, unable to walk, and forced to ride piggyback on her husband. And Juan, who proudly built a successful and beloved business, worries that his disease will force him to give it up and sell out.

Boxing and biking are not the normal images we carry in our heads of people with PD. The images that spring to mind associated with Parkinson’s patients are of frail, helpless people in wheelchairs, shaking with tremor and drooling. The good news is that with a little luck and a great deal of discipline and support, this doesn’t have to be your immediate or even mid-term future. Instead, you can look forward to an acceptable quality of life that lasts for years, or decades with Parkinson’s Disease. As mortal humans, this is as much as we can reasonably ask.

You didn’t choose to be stricken with PD, but you can choose how you respond to it. We now, for the first time in human history, have a suite of effective tools to cope fairly effectively with the depredations of this disease. It’s not a cure, but past generations of Parkinson’s patients would surely envy us.

by Peter Dunlap-Shohl
NW Parkinson’s Blogger

“It is the work of the creative to be a prosthetic imagination for the distracted and the dull”
– Maxwell Hubert Maxwell, playwright, butterfly collector, amateur surgeon and snob.