Fighting Parkinson's by Bruce Talbot (This article originally appeared in the October 1, 2000 issue of the Vermont Sunday Magazine.

My brain is dying. Sorry to be so dramatic, but it's true. Pretty much. Now, mind you, the WHOLE THING isn't dying. The sector responsible for thinking up reasons for not doing yard work, for example, is functioning better than ever. The part that's dying, a tiny area called the substantia nigra, produces the chemical dopamine, which transmits brain signals that control movement. That makes me one of the estimated 1,000 to 2,000 Vermonters with what is now, thanks to actor Michael J. Fox's diagnosis, the latest "in" disease, Parkinson's. Six years ago when I was diagnosed, however, Parkinson's wasn't "in" at all. It was, most everyone thought, a fairly inconsequential grandma-and-grandpa malady that gave oldsters the shakes and resigned them to quietly padding around the house. When Parkinson's knocked at my door, I was 45, and its progression threatened to incapacitate me with tremors, yank my body with violent jerking, slow me to a shuffle, rob me of my voice, harden my face into a mask, and trigger depression and even dementia. In a phrase, at my unluckiest, I could become a prisoner in my own body.

Getting the News
When you reach your 40s, body parts twitch. You run too far, your legs twitch. You read too late, your eyelids twitch. So it was with no particular alarm and even some amusement that in the late fall of 1994 I noticed the webbing between the thumb and forefinger of my left hand twitching dramatically, kind of like Sigourney Weaver's alien-inhabited torso in the thrill film of the same name. Over the ensuing months, my hand became increasingly stiff, and I became increasingly alarmed. Much of what I was doing for work at the time, public relations, required me to use a computer; that is, to type. When I forced my left hand to stretch toward far-flung keys like B and Y and even E, I would, oddly, get woozy and nauseated. The work I was trained for, which I liked to do and which was my livdlihood, was literally making me sick. I edged toward a diagnosis. My first stop, hoping for an easy dietary solution, was a naturopath. No answers. I saw a chiropractor, hoping the solution might be a spinal realignment. I saw an acupuncturist, hoping an energy realignment might do the trick. Reluctantly, facing up to the possibility that something truly big was going on, I took the dreaded obvious next step and saw a neurologist. He was quick on the draw. He took my left hand as if to shake it and, instead, rotated it around the axis of my left wrist. He rotated my entire arm like the drive rods that turn the wheels of a train. The arm jerked like a cogwheel. He had me walk back and forth across his office. Like Frankenstein's CLUMP, slide...CLUMP, slide, my gait was clumsy. Then he gave me the tentative news: "You have possible early onset of Parkinson's disease." To help pin down the diagnosis, he gave me a prescription for Sinemet. Only through autopsy (a route I chose not to take) can a physician actually see Parkinson's in the brain, he explained. But you can go a long way toward obtaining a definitive diagnosis by administering Sinemet and noting its effect. If you feel better, you probably have Parkinson's. After a week on the medication, I, blessedly, felt dizzy and disoriented. However, my neurologist wasn't ready to declare good news. Sinemet wasn't always effective with Parkinson's, he said, and, what's more, we could instead be dealing with the after-effects of a stroke or an aneurysm. In short order, I found myself in the MRI unit across the river at Dartmouth-Hitchcock Medical Center, garbed in a hospital johnny, lying on a narrow plank that slowly eased me inside the colossal machine's suffocatingly tight patient compartment for a lengthy round of magnetic picture-taking. I had not had a stroke, my neurologist reported at my follow-up appointment. But, he said, the MRI had turned up evidence of an old, small, left-sided brain hemorrhage. Because of its location, it couldn't be considered a factor affecting my symptoms, but it was worthy of great concern. Simply put, would the pipe burst again? Back to Dartmouth-Hitchcock for a better look. During one of the less-fun mornings of my life, technicians poked a hole into the major artery that coursed its way through my groin. Then, like threading a drawstring into the waistband of a pair of sweatpants, they inched a tube up into my aorta until it eventually reached the outskirts of my brain cavity. Through the tube, they injected dye that would make any weak blood vessels readily apparent in X-rays. When the pictures came back, there was good news and more bad news. My blood vessels, thank goodness, seemed intact. And Parkinson's seemed all the more likely.

The Odyssey, Part I: A Point of View
Being a reasonably normal individual, my first reaction to the diagnosis, of course, was grim. "This is," came my automatic response, "the beginning of my life going down the tubes." It seemed like a point of view that was all too legitimate. It also was a point of view that left me feeling lousy. I knew that your point of view shapes your experience, and what you experience shapes your life. Indeed, it IS your life. Could I look at the situation, I wondered, another way, a way that could propel me through whatever lay ahead? I remembered Bob.

My Most Powerful Role Model - Bob Welsh, my boyhood friend, was one of the last kids of the early 1950s to contract polio while Dr. Jonas Salk's vaccine was sparing the rest of us from paralysis and death. Bob wore heavy braces on his legs in order to stand, and he got around by wielding cumbersome metal crutches. Bob shot baskets in his driveway. With his massive arms, he could swim. He was rarely slowed down. In high school, Bob was the first guy in our group to get a speeding ticket. To this day, more than ever, Bob Welsh shapes my outlook. In time, the point of view about Parkinson's that plopped into my head was, "This is going to be a huge contribution to my life and to the lives of a lot of other people." (More on that later.)

A Fatherly Caution - My dad, a retired internist who saw thousands of sick people during his lengthy medical career, told me early on, "Don't identify yourself as your illness." I have Parkinson's. I am not Parkinson's. That distinction has served me well.

The Odyssey, Part II: Day by Day
What is it REALLY like to have Parkinson's? For each person with the disease, it's different. I have severe rigidity on my left side - fortunately, I'm right-handed. My voice has taken a cue from Muhammad Ali's and softened to a hoarse whisper. (Therapy has helped me learn to project.) During the past six months, I've also developed tremors in my left hand and left arm that make me feel like I'm shivering without being cold.

Having the PD Experience Without Having PD - Try this little exercise to sample how Parkinson's disease interrupts the transmission of movement messages from head to hand. (It's actually a game you probably played as a child.) Stretch your arms out parallel in front of you and rotate them so your thumbs are facing down and the backs of your hands are touching. Move your right hand over your left hand and interlock your fingers.Then, with your fingers still interlocked, draw your hands toward yourself and up toward your chin. Have someone point at, but not touch, one of your fingers. Try to wiggle it. Often, people wiggle the wrong finger. You have to concentrate to get the right digit to do the right thing. Life with Parkinson's is that tedious, and a lot more.

Biggest Irony - I never was an athlete, but during the past six years I've been in the best shape of my life. (The Parkinson's motto is, "Use it or lose it.") One morning two years ago, when we lived in Barre, I was on my daily jog through neighborhood and downtown streets. A carload of jocks drove by, and somebody shouted ou the window, "Move it, old man!" I loved it! "I may be the old man," I thought, "but I'm the guy who's running and you're just a bunch of lazy slobs riding around in a car." It was a sweet moment of self-righteousness.

My Greatest Loss - We shouldn't define ourselves by our health status, but in America 2000 we can't help but define ourselves by what we do. As I said earlier, no longer can I do easily what I used to do well, and that's writing, or, more precisely, the mechanical function of typing. I used to write for and edit newspapers and magazines, whacking away at keyboards at the fairly respectable rate of 75 or 80 words a minute. Someone would shout, "Talbot, I need a new lead for that story. NOW!" And NOW is when I would have it done. I simply can't do things like that anymore. With the help of a voice-activated computer system, I can generate material, but it's slow going. I spend my days as a house husband. It takes, I figure, two to three times as long to do anything - picking up after our 8 year old and our 5 year old, making their lunches, cleaning the kitchen, doing the laundry, shopping for grocieries, fixing dinner. I try to squeeze in some freelance writing and public relations consulting, but if you figure that basic household chores take at least twice as long to accomplish, that leaves half the time that would have been available for producing income (again, at half the old speed). Unless you write best selling haiku, where does that put you? A chronic illness forces you to redefine your mission, to let go, to ask yourself what makes a person whole and productive and fulfilled.

The Challenge of New Emotions
The past six years have hardly been all enlightened transformation and super-heroics of the spirit. Not by a long shot.

My Lowest Point - Three years ago when we were living in southern Vermont, my wife received an appointment to a major state government position. For several months, she phased herself into the job, commuting to Montpelier for weekly three-day stints while I stayed home in Grafton with the kids. One day, alone and vulnerable, I hit bottom. The queston - the realization, actually, - came rumbling in: Why would my wife, I couldn't help but wonder, want to link her future to that of a partner who was likely to be a sorry playmate if not a crushing burden? When she returned home for the weekend, I let everyting pour out. "How dare you think I could be so small!" she exploded. "How DARE you!" She held me. She said she'd stay with me forever. Then she pulled back, looked me in the eye, grinned and said, "But the minute you start drooling, I'm out of here."

What I Fear Most - I fear cross-over. If and when my symptoms jump over to my right side, Parkinson's, for me, will be crippling. I fear choking and aspirating food. My throat muscles no longer contract normally, and I have trouble swallowing. Aspirating and resultant pneumonia is what kills the few people who die from Parkinson's disease. I fear depression. I fear loss of relationships.

My Favorite (and Most Embarrassing) Side Effect - All it takes is something as simple and sappy as that phone company commercial where the son comes home from the Army, and I'm a mess. I've subsequently learned that along with the death of dopamine-producing cells, a number of people with Parkinson's, like me, have suffered diminished empathy-controlling capacity. In March, my wife and I were at a "tres hip" Harvard Square movie house in Cambridge watching "Hurricane," the film about wrongly imprisoned boxer Rubin "Hurricane" Carter. Every time they showed the young boy who believed in Hurricane, who cracked open his heart and was ultimately responsible for freeing him, I'd gasp and sob. It's wonderful to be so easily moved. And It's also embarrassing.

Words Into Action
To pick up a dangling thread - following my lofty declaration during Year 1, that my disease was going to be a contribution to humankind, I being a reasonably normal individual, did nothing. I didn't know what to do. I didn't know what I had to offer. Then, one day, looking in the mirror, I realized I could offer - my hair! Although I'm beginning to be stooped and I have the geriatric shuffle, I still have all my hair, and almost all of it is still dark brown. My thinking was that I could provide shock value for the struggle to dispel the perception of Parkinson's as an aggravating but minor disease of the elderly. My first effort was to help a support group hand out free coffee to leaf peepers on the interstate. When I was introduced to tourists as a "Parky," eyeballs did the Rodney Dangerfield pop. Three times I've lent my hair, and the rest of me, to a national walk in Central Park to raise awareness and research money. I've been to Capitol Hill twice to do the same thing.

My Favorite Superstar - Because of his advocacy work and for another reason as well, Michael J. Fox is No. 1 with me. In June 2000, in Washington, D.C., I met the perpetually boyish actor, at the time 38, who sized me up and said, "So, we're about the same age, right?" My wife groaned and set him straight about my 51 years. Michael laughed, and walked away shaking his head. (Incidentally, the last time I checked, I was still pictured on the Web site of my new close personal friend giving a clenched-fist salute on the Capitol steps.) It's not that I've done so much to fight Parkinson's, but I am doing something, and I say that not to score any accolades. Getting out of my chair, I've learned a few thngs. I've learned that putting words into action changes your chemistry. By melding your life into something bigger, you become bigger and your complaints become smaller. You get swept along.

The Point Of It All - Get this, sick and healthy readers alike: The plot is the same for all of us. We were born...we're living...we're going to die. It's just that in sorting out the whole tangle of the human experience, we Parkies have a certain advantage over you healthy readers. I don't mean to make light of this rotten illness or the circumstances of anyone else, and if I didn't say it earlier, I want to make it clear: I want a cure, and tomorrow won't be too soon. But for those of us with a chronic illness, the plot can be simpler and in some important respects (dare I say it?) easier. As we lose, in other ways we gain. We have the advantage of lives ratcheted up a few significant notches, the enlivening of greater clarity that, truly, we're all leading quickly passing hourglass lives. I'm no psychologist, no philosopher, definitely no theologian. Awhile back, though, I was talking with a new acquaintance, who happened to be a therapist, about religious sick people who inquire of God, "Why have you done this to me?" The better question, he suggested, might be, "Why have you done this FOR me?" The heart of the matter - FOR me, FOR us all, believers and non-believers alike - seems to lie in that second quesion. It has something to do with appreciation. It has something to do with being cracked open like Hurricane. Parkinson's has cracked me open, and I am grateful.
The Sunday Rutland Herald & Sunday Times Argus, "Fighting Parkinson's." Vermont Sunday Magazine, October 1, 2000, 8-11.