Those who have been gracious enough to read my previous posts may know I suffer from a number of debilitating physical, neurological, and (I am not ashamed to acknowledge) psychiatric ailments. One suffering chronic pain will become rather depressed after years have passed without relief. There’s no way around that.
The chronic headaches began well over five years ago, and are themselves a byproduct of two brain surgeries I underwent over thirty years ago. At just seven years old I needed a VP shunt placement which remains to this day. As it happens, sometimes when you’re a small child and the doctors need to open your head up twice, first to implant the device, and then again very soon thereafter because it wasn’t working; your skull and cranial nerves as an adult can be affected. None of my doctors warned me of that. Perhaps they did. The old memory’s not great either.
The last few years my doctors have focused primarily on that. Treating my pain and little else. Meanwhile, more issues are accruing under the surface. Beneath the medicinal haze, things are changing that I know have nothing to do with the pains in my head.
Over the past two years or so I began having a persistent, rolling tremor in my right hand, left leg, a marked change in my walking speed and gait, among a handful of other symptoms I won’t bother to list here. These new symptoms, my brutally to-the-point neurologist casually told us (as if he were examining a bug bite) “It looks like Parkinson’s disease to me,” before signing my prescription refills and forgetting my name again on his way out the door. For reasons I can’t understand, that matter-of-fact prognosis primarily bothered me because it was delivered like a sucker punch, not because of what it could potentially mean for my life going forward.
Given the way that was handled, we opted NOT to ask Dr. Ice Enema for a referral to a specialist, as any friend of his…is probably a real charmer. Instead, we were fortunate that my wife works closely with a doctor who referred us to a highly respected specialist.
I had my initial appointment with Dr. LeWitt six months ago. During this exam, the doctor was very kind, thorough, and clear with us about each step of the exam and what he was doing. His assessment, sadly, was ultimately the same as my neurologist. He could not rule out Parkinson’s disease based on our exam.
The next step was a medication trial. This is how Parkinson’s disease is diagnosed; through combined assessments of multiple neurologists, and a drug trial. If after the medication has been used for a number of months a patient notices a marked improvement of the symptoms, the initial prognosis is considered confirmed. Particularly if symptoms resume when a dose is missed or late. Other factors may also cause symptoms to flair in spite of the medication.
Dr. LeWitt and his colleague each examined me again yesterday (as I write this), and were each in agreement that I do, indeed, have Parkinson’s disease. Dr. LeWitt was very reassuring and kind as he told us this, though I noticed he seemed to have a difficult time saying the words himself, sadness in his eyes. I am now free to panic, but I didn’t. Perhaps it’s the meds, or perhaps I already knew. In either case, panic was not my reaction to the “news” at all. I simply wanted to know what we do now. What we do now is increase the meds a little and begin speech therapy. Step one: figured out.
At 36 years old, my diagnosis is considered early-on-set. It puts me in the same age range as two people I’ve admired all my life for who they were long before they were diagnosed with PD. Michael J. Fox was a childhood hero to me. Despite being only 5 or 6 years old, if I could not watch cartoons, I was always happy to watch ‘Family Ties.’ Alex P. Keaton was, for whatever reason, to my tiny mind, the definition of cool. He was the most grown-up kid I’d ever seen and I strove to become as smart as I could as fast as possible if I were to be so grown-up at his age. Soon the ‘Back to the Future’ films came out, and my awe of what that “grown-up kid” was doing went for a quantum leap. Marty McFly is very much responsible for the noise I would later make in my parents’ garage with my own electric guitar.
My fascination and admiration for Muhammad Ali began a little later on, as I grew interested in boxing. My interest in boxing (like football) began because the doctors forbade me from participating in either sport. The Greatest of All Time became a dual hero to me as time went on because of his own defiance of authority. The more I learned about him, the more I wanted to know (imagine my disappointment at the Will Smith movie). The more I knew, the more I admired him. Besides being the baddest man in the world, his eagerness to proclaim himself so very much inspired me. It taught me never to hesitate to make my confidence clear when faced with someone who is simply wrong. To never back down.
With his recent passing, I felt uplifted in a strange way. Because Muhammad Ali did NOT die of Parkinson’s disease. He LIVED with it. Like a champ. Just like McFly is, and just as I shall. When the book is closed on my life, I will be said to have LIVED with it. For my part, I will cherish every moment that I do. Beginning…now.