DIAGNOSIS: DENIAL
New York—October 1991
One morning, less than two years later, I found myself wandering the halls of New York City's Mount Sinai Hospital. The name of the doctor and his office number—listed on the directory in the building's giant atrium lobby—matched those on the scrap of paper I'd brought with me to the hospital and slipped into my left pocket. Now, after ten minutes of exploring the medical center's maze, I'd forgotten the room number altogether. No big deal, right? Just refer to the paper again.
Well, that was one of the things I was having a hard time getting used to: there were still times, particularly midmorning, when I was relatively free of symptoms, and could use my left hand much as I had for the first thirty years of my life to do things like, for example, casually tuck a slip of paper in my jeans pocket. But then, with no obvious cue, the symptoms would fire up again, my left hand would begin shaking uncontrollably, as it was now, and the process of retrieving that slip of paper from my left pocket was anything but casual. It required a right-handed cross-body grope that was awkward, at best, and, at worst, vaguely obscene.
White-jacketed nurses and doctors scurried back and forth through doorways and along the length of the corridor. Any one of them would have recognized the name of the physician I was looking for and been able to point me toward him, but that was the problem: as likely as they were to recognize his name, they were also just as likely to recognize me. I didn't want any water-cooler gossip about why Michael J. Fox was seeing one of the preeminent neurologists in North America, a renowned figure in the treatment of Parkinson's disease.
A week or two had passed since my initial diagnosis, and I'd still told very few people beyond my family. I didn't want anyone not directly involved in my care to associate me with the illness. I just needed Dr. Big Muckety-Muck to offer what would now be a third, and hopefully final, opinion so I could retreat once more to the privacy of my apartment.
After a few more minutes of slapping shoe leather against institutional floor tile, I arrived at the Department of Neurology, and finally the door of the doctor himself. His waiting room was empty—a relief. I was seconds away from the inner sanctum of his office and the protection of doctor-patient confidentiality.
The nurse/assistant at the front desk showed me into an examining room. She informed me that the doctor would be in shortly, and as I was shedding my coat and baseball cap, she noticed the shaking in my left hand.
“It's okay,” she said. “You don't have to be nervous.”
Confused for a second, I suddenly realized she was talking about the tremor.
“Oh,” I responded. “That . . . That's why I'm here. In a neurologist's office, I mean.”
After a second of mutual embarrassment, she left, closing the door behind her. Minutes later, it opened again, and in walked the legendary neurologist himself, just as wizened, curmudgeonly, and all-business as he'd been described to me.
“Says here you've been diagnosed with Parkinson's disease,” he grumbled with some incredulity. “How old are you?”
Thirty, I told him, and he shook his head as if he was pissed off at me for wasting his time.
“Well . . . I doubt you have P.D.,” he said. “Essential Tremor, maybe. Possibly something else. It's very unlikely that a fellow your age has Parkinson's. But you're here, so let's have a look.”
I would have hugged him if he hadn't immediately ordered me to drop my trousers and hop up on the examining table. He was about to lead me through the battery of tests that I knew so well by now that I could have conducted them myself. But I was hopeful. Finally, I thought, we're going to get to the bottom of this. This guy knows what he's talking about. This whole Parkinson's thing has been a colossal mistake.
In a practical sense, the initial diagnosis had been a nonevent. Telling Tracy, and then my mother and family, had been gut-wrenching—a lot of crying and hugging. But after that, how was I supposed to act on this information?—if, in fact, it was true and I chose to believe it. (Those were two very big ifs.) I played at being the patient, took to bed—as though putting a name to the physical sensations I'd been experiencing for over a year now suddenly made them ten times worse and demanded an entirely new protocol. But this didn't feel right. In fact, it felt downright silly.
In a classic case of shooting the messenger, I resisted following up with the diagnosing neurologist—never consulted with him again, in fact. Illogically and irrationally, I was just plain pissed off at the guy for having the balls to suggest such a fate was mine. In the short term, I would get a second opinion, and if that didn't put an end to this farce, I'd get a third.
During this time, it made sense to do a little personal research. But not with the purpose of finding facts about Parkinson's disease that I could relate to; more to find reasons to disqualify myself as a probable victim. The handiest resource was, of course, Tracy's Columbia School of Medicine Encyclopedia of Health. What the book had to say about P.D. was sandwiched between Stroke and Epilepsy. This is the entry's first paragraph:
Parkinson's disease, sometimes called shaking palsy, usually begins between 50 and 65 years of age. The disabling symptoms include muscular rigidity, slowness and poverty of movements, and tremor. Other signs of the disease may have been present, in retrospect, before the diagnosis is actually made. These include diminished blinking and reduced spontaneity of facial expression, stiff postures, loss of ease in changing positions (such as attempting to sit or stand), and a tendency to remain in a single position for unusually long periods of time. It is usually a shaking tremor of the hands, however, that finally brings the patient to a physician.
Contained in this first sentence was the one shining fact that I was pinning my hopes on: “. . . usually begins between 50 and 65 years of age.” My symptoms, if that's what they were, showed up in my late twenties. How could I possibly have this old person's disease?
In the days and weeks following my diagnosis, I observed what seemed like dozens of people with the symptoms of Parkinson's, all of them elderly. It's amazing I hadn't noticed so many before, although I'm sure my obliviousness could be attributed to what I call the Baby Effect. When I was single, babies were all but invisible to me. Then Tracy became pregnant with Sam, and all of a sudden everywhere I looked there were expectant mothers, mothers nursing newborns, pushing strollers, loading toddlers onto buses. Here was the same phenomenon, only infinitely more depressing. Those cardigan-wearing seniors I'd seen shuffling along Central Park West with their nurse-companions were often, I now understood, shuffling from the effects of Parkinson's disease. Courtesy had always taught me to allow old people to board elevators first, but I'd never realized that the reason it took so long for some to step inside, to find and push the proper button, was the debilitating hesitation of P.D. When I'd switch seats in a diner booth so I didn't have to watch the old woman across from me mismanaging her plate of eggs and bacon, not once did it ever occur to me that I might be turning away from the ravages of Parkinson's.
Chalk it up to the arrogance of youth, I guess. You might pay attention to this stuff if it's your grandparents—but otherwise, don't bother me. I'm young, I'm healthy, I've got other things to worry about.
Young Onset Parkinson's (the appearance of symptoms in people under forty), the diagnosing physician had explained, is rare. These patients make up less than ten percent of the overall Parkinson's population. This, I'd learn later, made me one of only a hundred thousand or so North Americans in my predicament. Just this once, though, I got no satisfaction from defying the odds.
I tried to remember if I'd ever met anyone under the age of seventy who might have been afflicted, and only one came to mind. A journalist—mid-forties maybe—who'd interviewed me for a magazine piece at a Greenwich Village coffee shop. The conversation was pleasant enough, but I remember feeling a guilty impatience with the distraction of her movements, the rattle of her sugar packet as she labored to open it and pour the contents into her coffee, and the irregular rhythm of her s
poon clinking in the cup—she wasn't actually stirring, just holding the utensil and allowing the shaking of her hand to blend in the cream and sugar. Like the neurologist's assistant, I assumed what I was witnessing was nervousness, and remember feeling mildly flattered that I might have that effect. But after a while I realized this wasn't a case of nerves. Nothing the writer said indicated that she was flustered in the least; to the contrary, she was all confidence and utterly professional. This was probably my first brush with Young Onset Parkinson's disease.
So, okay, obviously it was theoretically within the realm of possibility, but still . . . “usually . . . 50 and 65.” There could still be another explanation. Yet with each subsequent sentence, the Columbia Encyclopedia described a condition unmistakably like my own. “Symptoms include muscular rigidity, slowness and poverty of movements, and tremor.” All of these features were definitely present, predominantly in the left hemisphere of my body. The “poverty of movement” (I thought I'd left poverty behind back in the slums of Brentwood) was what had so shocked Tracy when she interrupted my Martha's Vineyard jog—the left arm barely swinging and out of sync with the rest of my body. There was also a rigidity in my hip, creating a barely noticeable hitch in my gait, plus I'd wake up in the morning with a stiffness in my neck and left shoulder, as well as my knee, wrist, and ankle joints.
“Other signs of the disease may have been present, in retrospect, before the diagnosis . . .” I reviewed my recent history for evidence that this might have been true and, regrettably, came up with quite a few hits. I considered the first example: diminished blinking and reduced spontaneity of facial expression. This could easily be confirmed through a review of my work by screening, in chronological order, a series of videotapes. I wasn't about to do that—only my mother could stomach that much of me—but the description of symptoms did resonate. I'd always thought, however, that my “diminished blinking” and “reduced spontaneity of facial expression” marked a growing comfort in front of the camera, less mugging, hamming it up—in general, an improvement as an actor. “No,” this book was telling me, in so many words, “you weren't getting better—just sicker.”
As for “stiff postures, loss of ease in changing positions (such as attempting to sit or stand),” my past work experience provided another clue. My favorite part of the original Back to the Future, filmed in 1985, was the Johnny B. Goode sequence during the “Enchantment Under the Sea” dance. As a frustrated musician, I was in my glory, learning the guitar chords and lead solo arrangements, as well as working with a choreographer to mimic and incorporate into the production number the signature styles and stage moves of my rock and roll heroes. Shooting this scene over the course of two days was sweaty, exhausting work, but I was young, in great shape (I thought), and it didn't feel especially grueling.
Four years later, for 1989's Back to the Future II, I had to reprise the Johnny B. Goode number, duplicate it right down to the tiniest detail. Not only did I find the moves much more difficult to pull off, but the physical toll was shocking. For weeks afterward, I was achy. At the time, I wrote this off to merely being four years older, but four years couldn't account for just how difficult it was for me to repeat the scene.
The last few words of the penultimate sentence in the encyclopedia's paragraph—“a tendency to remain in a single position for unusually long periods of time”—were also on the mark. They made me think of Tracy, or at least something she always kidded me about. Trying to reconcile the hyperactive blur I could sometimes be with the lumpen sloth I was at other times, she'd say, “You're the textbook definition of inertia. Once you start moving, you can't stop; but once you do stop, it's almost impossible for you to start up again.” It was an apt portrait and, unfortunately, a fairly good description of everyday life with Parkinson's disease.
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.
Lucky Man Page 16
