What a Difference a Quarter Century Makes 

When I was diagnosed in January of 2002, I would have never predicted the change that has been wrought in the Parkinson’s landscape in the years since that dread-filled day.  

I genuinely expected to be in serious shape by now, or even dead. When we finally forced my doctor to give us his prediction of how long it would take me to reach total incapacitation his reluctant best guess was 10 years.  

The fact that we hadn’t gotten around to curing PD in time for me to avoid it seemed like a terrible oversight on the part of the powers that be. Didn’t they know I had a family to provide for? A career that I loved? Artwork to create? Weren’t there new drugs or operations that could spare me this nasty affliction? 

No. There were not. 

Parkinson’s was coming for my ability to speak and write, to walk and run, to play the guitar and sing, even my ability to smell and taste. Instead of tending to my family and career, I could expect to be choking on my own saliva, racked with tremors, uncontrollably drooling, bedridden and hunched. I was told I could look forward to a time when my medication’s side-effects were more problematic than the disease itself, that my body would be knotted with dyskinesia, and I would lose control of my movement as gross and fine motor control went to Hell. There seemed to be no facet of life exempt from the disease. 

Needless to say, this cast a pall over my view of the future, which was taking on a drearily forbidding aspect at best. 

It just goes to show how wrong a guy can be. Instead of a bleak, dystopian future the PD community is coming alive with new ideas, scientific advances and political advocacy. The future, dare I say it, looks surprisingly bright. 

New pathways in the brain are being explored yielding possibilities for treatments beyond the well-trodden dopamine-based systems. And even those well-trodden paths are yielding promising new possibilities. For instance, the just-approved-by-the-FDA agonist Tavapadon approaches its targets in a novel way, animating receptors in cells that were untouched by previous dopamine agonists. There is evidence this will lead to dyskinesia-free performance. And how about the Parkinson’s vaccine that targets renegade proteins and removes them from the brain? Good thinking! Whoever came up with that idea deserves a raise! Just don’t tell RFK Jr. that it’s a vaccine. 

New theories about where and when the disease originates in our bodies will stimulate new thinking about ways to derail Parkinson’s as it progresses down its destructive path. New insights will be gained into how PD operates and will in turn suggest new avenues for treatment.  

My sense is there is real change in the way those of us who have PD think about what it means to have this malady, and how to react to it. People are taking their care into their own hands in ways we haven’t seen before. They are responding to the promise of exercise as a way of managing the disease, organizing boxing clubs and bicycle events. They are banding together to take on the political/industrial complex in hopes of controlling or outright banning hazardous chemicals associated with the development of Parkinson’s. 

There are still struggles ahead for those of us who suffer this arbitrary and mean-spirited malady, but it feels to me like momentum has shifted. After centuries on top, Parkinson’s is starting to topple. The sooner, the better. 

by Peter Dunlap-Shohl
NW Parkinson’s Blogger and Person with Parkinson’s

“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.