Lucky Man (20 page)

What I now understand only too well is this: the reason that the symptoms were presenting in such a gradual (my own characterization would be
insidious
) fashion had to do with the effect of the disorder on the mechanics of the central nervous system. A part of the brain known as the
substantia nigra
contains a group of cells that produce a chemical called dopamine, which acts as a messenger, transmitting signals within the brain. When, for whatever reason, these cells begin to die, the result is a gradual reduction in the amount of dopamine manufactured. The messages aren't being delivered properly, if at all, to certain nerve cells in the brain, or neurons, critical to motor function, and they start to fire out of control. As a result, the brain's owner (in this case, me) is no longer the final authority over the movement of his body. Like a car without motor oil, a brain without dopamine is going to slowly but inevitably break down. The physical changes I had failed to recognize as symptoms were like the red light on the dashboard, but who knew to look? Come to think of it, I'd always ignored all those little red lights on the dashboard—much to my father's chagrin.

It's possible that I'd actually had Parkinson's for five or even ten years before I noticed the twitching in my pinkie that morning in Florida. Scientists believe that by the time a patient notices even the tiniest tremor—the blinking red light, if you will—as much as eighty percent of the dopamine-producing cells in the substan-tia nigra are already dead, totally lost without any possibility of recovery.

Which brings me to the final sentence of the paragraph: “It is usually a shaking tremor of the hands . . . that finally brings the patient to a physician.” It was bad enough that I might have a chronic progressively degenerative brain disease, but did I have to be so
goddamn
predictable on top of everything else? This predictability was no small part of the entire horror show. One of the things I'd be losing here was
freedom
, and I don't just mean loss of physical freedom as a result of the demise of thousands of tiny brain cells. If this diagnosis was correct, if I had this disease, then I would forever be locked into a prognosis, and with that, an identity I'd had no part in creating. I'd be tracked and studied, compared against others
just like me
, and the findings would be scrutinized to see if or how I varied from the
norm
, in what way my progress differed from
projections
. And all the while, I could be counted upon to go through a by-the-book coping process: Elisabeth Kübler-Ross's five stages of grief (denial/isolation, anger, bargaining, depression, and acceptance); my most trying personal experience reduced to a common laundry list by some Swiss woman I'd never even met.

I can't overemphasize what a blow this prospect of being so unfailingly predictable was to my sense of myself as an individual. And further, if my diagnosis got out, it wouldn't be simply a matter of my employer knowing and perhaps judging me differently. Or Mrs. Jones, the neighbor across the backyard fence, gossiping with the other parents in the carpool. No, the
whole world
would know. After my wedding and my father's funeral, I knew full well how the tabloid press would run with a story like this—possess it and thereby possess a greater part of me than I was willing to let go of. I wasn't just losing my brain, I was losing my
franchise
.

Back to that very first sentence: “Parkinson's disease, sometimes called shaking palsy, usually begins between 50 and 65 years of age.” Here was the escape clause I clung to like a life raft; my only hope for salvation. Like the doctor said, it was very unlikely that a fellow my age could have Parkinson's.

At Mount Sinai Hospital, even as I was finishing the last of my finger taps and nose touches for the great doctor, the ultimate authority on Parkinson's disease, I knew I had failed miserably. So it came as no surprise when, after dressing and stepping into his private office, he asked me to sit down in the chair across from his desk.

“I'm very sorry,” he said, his earlier impatience giving way to sympathy. “But it's clear to me that you do, in fact, have Young Onset Parkinson's disease.”

Now what?

THE ESCAPE ARTIST—REDUX

Once Dr. Muckety Muck had rendered his verdict, I had little choice but to go with the consensus that I was in the early stages of Young Onset Parkinson's disease.
Go with
, mind you, is a long way from
accept
—as Ms. Kübler-Ross could tell you, I'd have a great distance to travel before I finally reached
acceptance
. Sure, I understood that the medical facts all pointed toward a confirmed diagnosis; that I would have to at least behave as if I really had this disease, research the proper medications, take whichever one was indicated, and so on. But I hadn't really fully surrendered my denial.

Stubbornly, I clung to fantasies of escape, hoping against hope that somehow my diagnosis would turn out to be a mistake. Or, better yet, having defied the odds by being one of a tiny population of young adults with Parkinson's, I would further defy the odds by being the only reported case of the condition magically disappearing. I'd have a couple of symptom-free days, let's say, then Tracy would casually drop that she'd switched toothpastes—did I notice the difference?—and I'd slap my forehead and say, “
Jesus, honey
, the toothpaste! That was it! You've cured me!” I know it sounds nuts, but hey, you've read the first half of the book.

Exasperation, frustration, and fear were my constant companions in those early days, but I never once found myself resorting to blame. Who was there to blame? God? My notion of spirituality was different then than it is now, but even if I'd been the most fundamentalist of believers, I would have assumed that God had better things to do than arbitrarily smite me with the shaking palsy. I was no Job.

Blame assumes causation and, in that respect, Parkinson's remains a murky matter. Researchers have not yet found the exact cause of Parkinson's disease. Most believe a combination of genetic and environmental factors are involved, but no definitive data exist. There was no history of Parkinson's in my family, for example, but that doesn't mean there wasn't a genetic predisposition toward developing Parkinson's if exposed to certain environmental pollutants such as pesticides.

It's come to my attention, all these many years later, that at least three other people who worked with me at CBC's Vancouver Studios, where we taped
Leo & Me
in the mid-seventies, have all been diagnosed with Parkinson's at an age that would put them in the Young Onset category. Was this mini-cluster a coincidence, or evidence of a common environmental cause—a “sick building” or chemical exposure? The last I heard, an investigation by research scientists was under way, and I have an obvious investment in their results. I'm curious about what they conclude, though not because I'm looking for someone to blame, a bad guy on whom to vent my anger by means of a well-lawyered class action suit. The real reason I'm curious is that their findings may provide one more clue in solving the mystery of causation, and discovering the cause is the surest road to a cure.

The doctors had asked me if I'd ever worked with or been exposed to a litany of metallic-based chemicals or abused any opiate-based drugs such as heroin, laudanum, or morphine compounds; some young heroin addicts have developed advanced Parkinsonism after using a synthetic version of the drug containing the chemical compound MPTP. The answer to all of these questions was no. There was also the possibility a head injury had been responsible; I'd suffered several concussions playing hockey, and I couldn't help thinking of Muhammad Ali, whose Parkinson's I assumed, perhaps falsely, may be related to the countless punishing blows he received in the ring. But the doctors all seemed quick to dismiss head trauma as a factor in the development of my symptoms.

Even if I hadn't knowingly done something stupid to put me at risk, there were times when I did fault myself. My culpability, as I saw it, had to do with my failure to anticipate this calamity. For all the fretting I'd done about the ultimate No—the looming disaster that would offset all my halcyon fun house years—I'd never prepared myself for anything quite this bleak, this
perfectly
shitty. Why me? Why
not
me? It's human nature to search for meaning, and I was sorely tempted to see my illness as a metaphor (a tendency Susan Sontag brilliantly dissected in her book
Illness as Metaphor
). My Parkinson's represented the dropping of the other shoe. It was payback. It was the bill being brought to a sloppy table after an ill-deserved and underappreciated banquet. Such a turnabout I had no choice but to consider fair play. I should have seen it coming. In a way, this was my father talking, but there were times when the sentiment was mine.

Angry or not, my only immediate recourse was to just get on with it until I could figure out some way to get out of it. I wouldn't begin regularly seeing a neurologist for several more years, but the original diagnosing physician had given me prescriptions for two different P.D. medications: Sinemet, the brand name version of levodopa or L-dopa, and another called Eldepryl (generically known as selegiline hydrochloride). Each acts differently within the brain to help mitigate symptoms, and they are just two among an ever-increasing number of commonly administered pharmaceutical therapies that include: Comtan (entacapone), Parlodel (bromocriptine), Requip (ropinirole), Permax (pergolide), and Mirapex (pramipexole dihydrochloride), Artane (trihexyphenidyl), Cogentin (benztropine), and Symmetrel (amantadine). Some of these work better than others, some not at all, depending on the patient and the severity or idiosyncrasies of what is, for all practical purposes, his or her own personal disease. Over the years, at one time or another and in various combinations, I'd take a turn on the dance floor with almost all of these drugs. None is, of course, a
cure
. There is, at this writing, no such thing.

The doctor wanted me to start on Eldepryl, which can ease symptoms by delaying the breakdown of what dopamine the brain still produces. I took Eldepryl for a while, maybe a week, and found it had only a minor effect on the escalating tremor in my left hand. Again, it's important to emphasize that every patient experiences a unique manifestation of the constellation of symptoms that fit under the general umbrella of
Parkinsonism.
By the same token, every patient reacts differently to treatment, so it's crucial that he or she work closely with a neurologist to find the most effective way to manage the disease, not to mention strike a tolerable balance between the benefits and side effects of the various drugs. If I had followed this sensible advice, my experience with Eldepryl might have been more successful, but I was looking for more immediate results. Basically, I just wanted the symptoms to go away so I could forget about the whole mess for as long as possible, and, even more important, keep anyone else from noticing. So it was on to the next drug for me.

The first drug approved specifically for Parkinson's (in 1970)—and still the most often prescribed P.D. medication—is Sinemet (levodopa). Sinemet is taken up by the brain and changed into dopamine, the neurotransmitter that a Parkinson's patient can no longer produce in sufficient quantities. In most patients, Sinemet significantly improves mobility and allows them to function almost normally. As Parkinson's disease progresses, however, the drug often proves less effective, making it necessary to take larger doses, thus heightening the risk of debilitating side effects like dyskinesias—involuntary movements and tics. For this reason some doctors try to postpone their patients' use of Sinemet for as long as possible. It's also an accepted truth that if Sinemet succeeds in relieving your symptoms, that removes any doubt you have full-fledged Parkinson's disease. So I had decidedly mixed feelings the day I first took a half a Sinemet pill and, after approximately thirty minutes, found that the tremor had vanished, and didn't return for almost five hours. The bad news was obvious: here was yet another confirmation I had Parkinson's disease. The good news was, now I could
hide
it.

Given what I do for a living, the very notion of hiding seems, on the face of it, ludicrous—the expression “hide in plain sight” pushed to the extreme. But, I never gave a second's thought to sharing my diagnosis with anyone outside of my inner circle of family, close friends, and trusted associates. I saw absolutely no compelling reason to do so. I didn't, and still don't, feel as though I was
deceiving
anyone by not immediately going public—this was my problem, I'd deal with it. With Sinemet, I now had the means to completely mask symptoms. If my employers didn't notice any difference in the way I performed my job—and, for the time being anyway, there really was none—then I had no compunctions that I was somehow peddling damaged goods.

Since I didn't yet have a neurologist (I didn't even have a regular internist in New York, where I was living most of the time), I had my general practitioner from California prescribe Sinemet whenever I needed refills. I carried them around, loose and broken in the pockets of my shirts, coats, and trousers, popping them in an admittedly haphazard fashion until I achieved the desired result. I was a young man with a brand-new family, I had work to do, and I intended to pretend as if none of this was actually happening to me. Although, knowing what I knew, my life now could hardly go on business as usual.

Following his surprise pronouncement that I had P.D., that very first diagnosing neuro offered what I assume he considered an upbeat prognosis. “With proper treatment,” he promised, “I see no reason why you can't have another ten good years of work ahead of you.”

Ten years
? I had just turned thirty.

There was a rueful irony in the prospect of having to retire at forty. Jokingly, I had been announcing for years to disbelieving friends that forty was the age at which I intended to pack it all in, retreat with my family to our farm in Vermont, and pursue other interests. We'd all share a laugh. It was, of course, an idle threat, a fantasy of seizing control over the vagaries of show business:
I can quit and live life on my own terms
. But now, confronted with terms far harsher than those dictated by a fickle public or the box office bottom line, what had been a hypothetical and voluntary fallback position was suddenly my fate. Forget
abdication
, this was a
coup
, and in my panic I decided to break out the pillowcases, loot the palace, and escape with whatever I could carry.