I was adamant about not writing a book about having Parkinson’s Disease. I fended off friends who put the pressure on to undertake the challenge of creating a worthwhile contribution to the overstuffed shelves of PD memoirs. I protested that, in the words of guitarist Marc Ribot, I didn’t want to throw more rubbish on the trash heap of culture. 

This wisdom notwithstanding, friends continued to try to convince me that I owed the world a book and that I should stop monkeying around and get going on the manuscript while I could still draw and type.

Finally, my friend Steve Aufrecht hit on the formula that disarmed me. “You treat Parkinson’s as an adventure” he said. This idea inspired me to go forward with the project, daunting as it was.

But how does the beguiling phrase “Parkinson’s as an adventure” hold up when put to a reality check? Someone, okay it was me, once pointed out that “true adventures are involuntary.”

If the hero can decline to pick up the sword, or take on the journey, or enter the creepy broken-down mansion, there is no adventure. It is the same with Parkinson’s, it is involuntary. If Odysseus had his way, he would have taken an Uber straight home to his wife and dog after the Trojan war instead of wasting precious years having adventures with the cyclops, Circe, and the Sirens. But like those of us who have PD, there was never an opportunity for him to decline the honor. 

Another overlapping characteristic of Parkinson’s and adventure? Suffering. We endure all kinds of pain, physical and mental, and soldier bravely on. We do this despite what we cheerfully minimize as “nothing, not bothering me a bit” while our aching muscles scream for mercy, and our weary souls quail at the idea of taking another goddam festinating step. 

To go with suffering, there is always danger, ready to swoop down on us as we strive not to lose our balance and suffer a catastrophic fall while walking the dog or mingling with a crowd. 

Is there any other aspect that could qualify Parkinson’s Disease as an adventure? I can think of one more, and it’s the most important. The people, mostly allies, and some antagonists, that you will be thrown in with along the way. I would never otherwise have come in contact with Alec, the dedicated motion disorders specialist who helped me arrange my DBS operation. Likewise, it’s highly unlikely I would have met Olympic bicycle racing gold medalist Connie Carpenter Phinney, whose husband, fellow champion cyclist Davis Phinney, has Parkinson’s. I never would have become friends with my Parkinson’s guru, the wise and witty Dave Heydrick. Dave is a neurologist with PD who surveyed all the promising approaching Parkinson’s therapies and became an early advocate of exercise for treating it. He has probably added years to my life; not merely extra years but quality years. And what about the one-of-a-kind Chris Sparks? Chris, with no training or experience, but boundless energy, has raised hundreds of thousands of dollars for PD research in honor of his cherished friend, the late cartoonist Richard Thompson. 

Bless them. These people have not only made the way easier, they have made the trouble worth the going.

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.