September 2022

Beating the Odds: Ganging up on Parkinson’s Disease

My movement disorders specialist was a touch annoyed with me. I can see why. I was balking at following some advice she had given me, advice which was informed by years of experience and training, advice which I was, in fact, paying her to give me. But it wasn’t advice I was ready to follow, I didn’t think I had arrived at the stage when I needed to implement it. She saw this as pride on my part, and it probably was. 

Okay, it definitely was. 

This would account for the note of frustration in her voice when she told me “You’ve already beaten the odds.”

For a brief moment, I felt a glow of achievement, but when I thought about it, I realized what I was congratulating myself for was not vanquishing Parkinson’s, (nobody does that) but for doing better than many of my fellow sufferers in contending with this disease. Not only was this ignoble, it was mistaken. 

I haven’t beaten the odds. The odds have been beaten for me. I owe the fact that I am still relatively functional 20 years after diagnosis to things which are out of my control. In other words, luck. Among the shapes that luck took, the most significant forms were the good will and hard work of smart, compassionate people. People who have made it their mission to help me, and others like me, who struggle with this disease. Most of these people are strangers to me, but they nevertheless have benefitted me in ways that are significant and substantial. 

The first group of these people would be the doctors who have committed to the demanding care of neurological patients. I know they are just doing their job, but neurology is an emotionally draining field where doctors manage decline rather than see patients get better. And see above, where patients don’t always cooperate.

Next would be the researchers who find medications that help me approximate the outward signs of normal human behavior. Also included: the discoverers of Deep Brain Stimulation, and the team of techno wizards at UCSF who performed that operation on me. And let’s not forget the ingenious physical therapists and speech pathologists who have found ways to recapture some of what we have lost, and patiently restore it to us.

I also owe much of my sustained ability to function to my redoubtable wife and stalwart care-partner/caregiver Pam. Whenever I am asked for advice on dealing with Parkinson’s I am tempted to say “Marry Pam.” It’s a temptation is I am not prepared to give in to. I know it’s selfish, but I intend to hold on to her. The rest of you will have to make other arrangements.  

I also owe a huge debt of gratitude my friend and fellow person with Parkinson’s Doctor Dave Heydrick. Dave contacted me years ago with the question “Can you pedal a bike at a pedal cadence of 90 rpm?” I said I didn’t know and asked him why he was interested. He told me that researcher Jay Alberts of the Cleveland Clinic had established that pedaling a bike at a rate of 90 revolutions a minute for 40 minutes a day could reduce PD symptoms by a one-third and led to positive changes in the brain. Furthermore, the beneficial effects of this “forced exercise” lasted for weeks after the exercise was no longer engaged in. Did I manage to pedal at that cadence? You bet I did! And I have done for many years now.  Do I still have off times?  Yes, of course. There is no escaping Parkinson’s. Yet. But me and a bunch of other people together are giving it a run or more accurately, a pedal for the money.

by Peter Dunlap-Shohl
NW Parkinson’s Blogger