Trouble With The Curve

Through the first part of a rather inauspicious Little League career, I struggled to hit straight fastballs and was fortunate that young pitchers back then were discouraged from throwing the curve. When I graduated to Babe Ruth League, the first two curveballs I ever saw knocked me on my backside despite both being called strikes right over the center of the plate. The pitcher was an older kid from my neighborhood, and I will never forget the cocky look on his face as he wound up on the mound and delivered what I figured to be my third curve. Now if that kid had been Greg Maddux smart, I would still have a fastball stuck in my ear 40 years later. But the Fates were kind to me that day, and when I closed my eyes and swung through the middle of the strike zone, the ball rifled through the box for a single (or maybe it was a bloop hit just beyond the infielder’s grasp–who can remember for sure?). I like to say I have never backed away from a curveball since, but truth be told I never saw another curveball until I was diagnosed with Parkinson’s disease in 2010 at age 50.

The diagnosis didn’t floor me like my first two curves, but I let a few pitches go by before I started to swing. Parkinson’s disease is a progressively debilitating neurological disease that as of yet has no cure. My primary symptom was a tremor in my right hand that was first diagnosed as benign and then as Parkinson’s as it became increasingly suspicious. My doctors were slow to make the diagnosis because, in their view, there wasn’t much that could be done even if I had PD, so when they finally did get around to making the diagnosis I did what was expected–nothing. I kept writing. I didn’t get depressed. I just waited for the symptoms to progress until I was ready to medicate, a decision that is not critical because the drugs only mask symptoms, they don’t actually slow disease progression. It was–and still is–like living with a clock nestled in a corner of your mind, each tick marching you closer to a new symptom that will pop up like a nasty jack-in-the-box one day, only to disappear a few days later. But you know it’s going to come back and, eventually, linger. Tick, tock. You just don’t know when. You know the next symptom to emerge might be worse–but you don’t know which ones you’ll get because PD is a smorgasbord of symptoms and everybody’s plate looks different. Is that ankle cramp an early sign of painful dystonia or do you just need to eat a banana to boost your potassium levels? Is that right foot starting to drag or did you just trip because you were glancing through the latest issue of…Sports Illustrated while walking? Tick, tock. Time will tell.

So I let a few pitches go by; never even lifted the bat off my shoulder.

And that was a mistake.

There are thousands of developments in the medical community every year, and it takes time for consensus to build in the research community and time for word to trickle down to specialists and more time for generalists to learn the latest and greatest. Over the past decade, the evidence has been mounting that vigorous exercise may slow the progression of Parkinson’s disease. I heard this for the first time almost two years after first diagnosis, at a PD conference here in Atlanta. A renowned physical therapist urged us all to not just exercise, but to exercise at an intensity out of our comfort zone.

A reason to step up to the plate, right? So I took a swing, ratcheting up my normal exercise routine on my elliptical from “just get me through this Seinfeld re-run” to “sweat like a pig, you lazy…bum.” I felt better within three weeks. Not just physically fit better–my PD symptoms improved. The tremor took a few steps backwards. From time to time I’ve had to cut back my routine, and within a few days my tremor gets worse.  Not exactly scientific proof, but good enough for me when you combine it with the results of hundreds of clinical studies that are mostly pointing in the same direction.

So I spent the next year or so adding to my exercise routine and joining the many voices in the PD community touting the benefits of vigorous exercise, be it on social media or through my local support group. But it struck me that we were, for the most part, preaching to the choir. The folks in support groups and on Facebook groups devoted to Parkinson’s are the motivated patients who are out there swinging the bat. Many of them share the same story–it took them a while to find the PD community because their neurologists focused primarily on medicine and were not telling newly diagnosed patients about the things they could do now to live better with PD.

So now I’m ready to take a bigger swing at the curve I know is coming. For the moment, I’ve set aside a great idea for a third novel and have turned my attention to Parkinson’s advocacy. While many other good people are leading the charge for a cure, I am focused on helping newly diagnosed people with Parkinson’s learn how to live better with the disease, primarily by making community-based exercise programs available to people with PD. I’ll be absent from these pages except for the occasional rant, but you can learn more about my latest cause on the PD Gladiators website, where I will be blogging on a more regular basis. Thank you for your support of my writing endeavors, to which I one day hope to return.