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2-07-2007 Jim Atwell I'll hold to my promise of not belaboring you with this topic; but an occasional report, I hope, will be a kind of public service. I'm not the only one who finds himself rowing this boat. In fact, after I told you on Dec. 13, 2007 about my diagnosis, I had a half-dozen phone calls from men around here, all of them with Parkinson's. Some have been dealing with it for years, and all were wonderfully supportive. But a couple of them, it seemed, have withdrawn from life and into their homes. They don't want to be seen with what once was called "the shaking palsy." That's too bad, though I readily sympathize. Every time Anne and I eat out, I dread splashing soup onto the tablecloth, or coffee into my own face as I raise a cup. Once Parkinson's has joined the family, it's like taking an unruly child to the restaurant. You can stay on the alert, but there's no predicting the results. But, back to my report. No need to bury you in facts and figures; if you're wired into cyberspace, reams of material is available literally at your fingertips. Just couple your search engine to "Parkinson's," and it will haul a trainload of information onto your screen. But here's a quick summary: Parkinson's is progressive, degenerative, and, at present, incurable. Its cause is a brain's reduced making of dopamine, which functions like a governor in controlling bodily movement. Whence the quakes, shakes, and spasms that are its most obvious symptoms. Parkinson's also affects speech, swallowing, posture, walk, balance, even facial expressions. Current treatment addresses the symptoms. Research, advancing rapidly, is aiming for the cause. Over a half million Americans have Parkinson's, and doctors turn up an added 50,000 of us each year. Though it's not much comfort, the rich and famous are among us. Perhaps the bestknown Parkinsonian is Michael J. Fox. After being hit with the disease at age 30 and at the height of his film career, he has turned his energies to education on the subject and to fundraising for research. And in Mohammed Ali you see some classic symptoms of advanced Parkinson's: his muted, slurred speech; his robotic movement; his face, once so animated, turned into a rigid mask. But all that information, as I say, is readily available to you. What I can provide is a sense of how the disease feels to someone you already know well. I can tell you about Parkinson's from the inside. And when I raise the subject here every few months, it will be to do just that. Back in December I said Parkinson's was a creature now sharing my body and life. I'm past personifying the disease that way, as if it were some alien that has invaded me. I guess it speaks to our primitive past that we brand diseases as assaults from the outside. We say, "I've been hit by a rotten cold." Or, "Poor guy suffered a stroke," as if it were a literal blow. Or, "She suffered a heart attack at 65." Or, "He was stricken by pneumonia." From terrible personal experience, I understand the tendency to see disease as an attacker, an invader. As my first wife's body and life were consumed, I came to hate her cancer as a willful creature. I thought I could sense its powerful malevolence, and I cursed the cancer for what it was making Gwen suffer. When, at the end, she died in my arms, that hatred even cut through the searing grief. I heard myself growl, "You've killed her, you bastard, but at least now you'll die, too!" But, personifications aside, many diseases do enter us from the outside. They come, not as willful demons, but as bacteria and viruses, mindlessly indifferent to us, mindlessly in search of a host organism. Or perhaps they arrive as environmental toxins, unable to know the havoc they will wreak on healthy organs. But Parkinson's isn't like that; and acceptance of the fact is my biggest challenge these days, the one that I want to share with you. Though some research suggests that toxins can get it started or speed its progress, Parkinson's is essentially a brain breakdown. It's the failure of my original, factory- installed equipment, with really nobody and nothing outside me to blame. Parkinson's starts deep in the cerebellum, the part that's called "the primitive brain" because we share it with all sentient creatures. Deep down in there, the steady secretion of dopamine slows drastically as production cells die off. That's bad news, since, as I've said, dopamine is the governor that checks and controls bodily movement. Yep, that's what spatters soup on the tablecloth or splashes coffee into one's own face. That's what causes the stumbling walk. The effect of this knowledge on me is strong. I'd really sooner have someone, something outside of me to blame. But there's no blame to be assigned, even to me. It's just that a major function of a very complicated organism is breaking down, and I'm deeply involved. The organism is me. Here's my present image for myself: I'm driving at night through blowing snow and sleet. I'm miles from anywhere. But I'm behind the wheel of a good, steady car that I know well; and I'm drawing a lot of comfort from that fact. But then, without warning, the motor begins to miss and splutter, the whole car to buck. That, friends, is about where I am. Read about Jim Atwell's book, "From Fly Creek - Celebrating Life in Leatherstocking Country" at JimAtwell. com |
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