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March 15, 2012

From Fly Creek: What you need to know

— In their last Sunday’s bulletins, all 84 churches of Otsego County were to have carried announcements of an important meeting; most of them did. But because the announcement is so important, and not just to the churched, here it is again.

(And it won’t hurt church folk to read it again, either.) On this coming Sunday, March 18, Oneonta’s Red Door Presbyterian Church (Main St., next to Friendly’s) and the area Quakers will be hosting an afternoon program called “YOU AND PARKINSON’S, WHAT YOU NEED TO KNOW.” At 12:30 p.m. that day, a soup-and-sandwich will be available in the church hall; and from 1:30 to 3 p.m. the program will be held right there. It will be an information session, with lots of time for  questions from the audience.Besides a neurologist, all the presenters will be “Parkies” or their care-partners, including Anne and me.

Why should you need to know about Parkinson’s? The answer parallels something I was joking about in this column a month ago: “Six degrees of separation between you and Kevin Bacon.” That is, you know someone who knows someone who knows someone who, etc.”

Well, that’s the case with you and Parkinson’s. But there are very few degrees of separation.

The U.S. has 300 million people these days, and 1 million of them have some form of Parkinson’s — that’s one in every 300 of us. And so, if you don’t know someone with the disease, perhaps a family member or friend, then one of those family members  or friends surely does knowsomeone. At the most, then, that’s two degrees of separation.

And, come to think of it, you do know me ... Here’s another sobering thought for us living in the beautiful countryside: There is an ugly jump in Parkinson’s statistics in the nation’s rural population. The biggest potential cause is probably careless use of pesticides and chemical fertilizers.

I knew an old Fly Creek farmer (I mention no names) who used to pour a gallon of concentrated pesticide into 20 gallons of water—and then roll up a sleeve and stir the poisonous mix with his forearm.

Toxins are, of course, not the only potential causes. Genetics can be involved, and head traumas are high on the list. That’s what may have brought on mine — falling on ice and whacking the back of my head 10 years ago.

The head-trauma cause shows up in many aging football players, and makes all the more critical the present concern over jolting collisions in high school sports.

You’re familiar with the world’s famous “Parkies.”

Michael J. Fox, bless him, is the best known, and his foundation, one of the world’s most efficient, has pumped huge sums into Parkinson’s research. But there’s also Mohammed Ali and John Paul II and Attorney General Janet Reno, who kept her condition to herself and, as a consequence, was parodied by comedians for her stiff expression and graceless walk. Perhaps you saw the very last film of John Paul II alive.

He was at his bedroom window, trying to raise his hand in blessing to the cheering thousands below. By sheer will power, he did raise his hand 10 inches and then had to drop it again. As he did so, he made a fist and banged his hand down, his face contorted by frustration. What a beautifully moving, totally human gesture that last one was.

And Mohammed Ali? Recently an Olympics retrospective on TV showed The Greatest as he lit the torch a few years back. His face was mask-like, his posture stiff, his steps shuffling.

When he extended his arm to light the torch, it shook violently. And in a voice-over, a witless, patronizing woman commentator purred, “Well, at a moment like that, even the famous can get a little nervous.”

I sat alone alone, watching and listening, but I still shouted, “You fool, he’s got Parkinson’s!”

For inside that frozen face and behind what’s left of his voice, Ali is still vitally alive, still witty and wildly imaginative. But those dimensions are trapped inside with him. But the man’s heroic. He presses on.

Part of the March 18 session will be a couple of short readings from “Wobbling Home,” and I have good news to share with you about the book. These days, when a book gets on Amazon, it automatically appears on Amazon Canada and Amazon Britain.

And since Amazon Britain is tapped by readers in all the former Crown colonies, “Wobbling” copies are making their way around the globe.

A friend in Vancouver, Canada, emailed to tell me that he’d heard from a doctor colleague in Hong Kong who said she was reading the book and recommending it.

That’s great, and so is hearing from many of you that you’re passing the book on to others. From my view, the more hands it gets into, the more usefulness it can have.

Please come to the March 18 meeting if you can, and talk it up if you can’t. We need to get the word out: This stuff is really close to home.