My PD Story

It was like skiing with a wooden leg.

It was January 29, 2011, and I was competing in the 50-km Noquemanon Ski Marathon. I was only 5 or 10 km into the course when the wooden-leg effect struck. It affected me every time I climbed a hill or pushed my pace. If I relaxed for a minute or two it would go away, but it always returned.

The hopes I had for a podium finish in my age group were clearly not to be fulfilled.

I was seen by regional sports medicine doctors and the Mayo Clinic at that time, but no one could provide a definitive diagnosis. I strongly suspect that this was an early indication of Parkinson’s disease (PD). Other symptoms appeared over time. I knew that something was wrong and that it was getting worse.

It wasn’t until February of 2019 that the diagnosis of Parkinson’s disease became evident. It is a diagnosis that was too familiar: my wife, Sally, also lives with PD.

Excellent medical care, a very active lifestyle, and good social connections have all helped me cope with my diagnosis and live well with PD.

In 2020, another outlet for dealing with Parkinson’s found me: music.

I was wide awake, at 3 AM in October of 2020, with the strains of Dolly Parton’s “9-to-5” running through my brain like an earworm. As I lay there, words started to come into my head —words about Parkinson’s — that fit the 9-to-5 tune. I soon realized that I needed to get up and write it all down or I would forget it.

I got up and turned on the computer.

Sally heard me talking to myself and singing and called out to ask what was going on. “I’m composing!” I called back. Over the next several weeks the entire song came together, but I had no idea what to do with it.

In November 2020, Sally and I had our semiannual appointments with our neurologist at the University of Michigan. At the end of my visit, I suggested that if my doctor had 3 minutes and 35 seconds to waste, I would sing him a song about Parkinson’s that I had written. He agreed, and I played a karaoke version of 9-to-5 and sang along. He got a kick out of it and asked me if I would send him the lyrics! He shared them with some of his colleagues, who forwarded them on to others.

About three weeks later the Parkinson’s Foundation reached out and asked if I could send a video of me singing the song!

I decided if I was going to make a video, I needed a band.

I found a talented local rock group that was interested in working with me. After weekly rehearsals for several months and the band’s patient guidance, we were ready.

We secured an auditorium (no small task in the middle of the pandemic) a videographer and a sound and lighting technician, and recorded We’ve got Parkinson’s, along with a second song that I had written to the tune of Stevie Ray Vaughn’s “Pride and Joy.”

After months of post-production, we finally had our music video! I sincerely hope it brings joy and laughter to others who are dealing with PD.

My Parkinson’s is well managed. I believe that exercise, especially mountain biking, has helped tremendously. I am fortunate to live in a place like Marquette, Michigan where I can ride my road bike and mountain bike on a nationally recognized trail system. There is something magical about the mountain bike. Riding involves balance, coordination, concentration and quick decision making. When I get on the bike, my balance issues disappear and everything is fine.

I strongly encourage others with PD to keep pursuing their passions and their creativity – even in the most unexpected ways!

Videography by Nick Slattery
Editing by Nick Jensen and Nick Slattery
Music performed by Maynards and Friends
Words and vocal by Bruce Closser