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Barnie Day: A decade with Parkinson's Disease
Wednesday, February 21, 2007
By BARNIE DAY - Special to the Bulletin
In 1817 English physician James Parkinson forever attached his name to the disease I have when he published a 66-page treatise describing in great detail the movement oddities he had clandestinely observed in the daily routines of six elderly Londoners.
A hundred and ninety years later, the diagnosis protocol is the same - there is no screening, no blood test, no sub-atomic marker, no hands-on examination. Doctors simply look at you - watch your movements - and tell you the name of this thing that has come into your life.
"You have Parkinson's," the pleasant, freckle-faced physician said to me in an Aussie accent when I walked through the door to his office at Duke Medical Center 10 years ago.
I hadn't sat down. I hadn't introduced myself. Other than my name, my weight and height, and my blood pressure reading, my medical chart was blank. I guess he knew that. He didn't look at the chart.
"That's it? No blood? No x-rays?"
"That's it," the doctor said. "No blood. No x-rays."�
"How do you know?" (Skepticism is a pronounced genetic trait in my family.)
"I know," the doctor said.
I was relieved. I thought I had a brain tumor - could imagine some fibrous, fleshy, nasty-looking, blue-veined thing the size of a baseball pulsing inside of my head. But imagination can do that.
I was so relieved at what I didn't have that I couldn't remember what the doctor called it when I got home and tried to tell my wife what the doctor said I had.
"It's that shaky stuff old folks get. Whaddayacallit?"�
"No. The other one. What Mohammed Ali has."�
(I met The Champ once, at a book signing in Chapel Hill. "I can take you," I said to him as he autographed my copy of The Greatest. He smiled but didn't look up. "Don't even think about it, white boy." My thought now, as I write this? Not since Churchill has there been such grace and courage packaged into one human being. The boxing? Anecdotal talent. Sublime, but still anecdotal, compared to his example as a human being.)
"That's it. I have Parkinson's."�
I am lucky. I have been all my life. I am still mostly functional. Still employable at 54. And, for the moment, still employed. I have good health insurance. I have lots of friends - in high and low places. I can get governors on the telephone and I know by first name many of the people who are jailed for one reason or another here in Patrick County.
(Service in the Virginia General Assembly will give you both of those connects. At the time I was diagnosed with Parkinson's, I held a historic seat in the House of Delegates, a seat once held by A. L. Philpott and Mary Sue Terry. And those who know me know that I loved it.)
During the past year I have fly fished in Montana, shot quail in Mexico and played maybe 15-20 rounds of bad golf, although boys I used to beat with regularity give me strokes now. And at cards - small stakes, junk game stuff - my friends shuffle and deal for me. I can still manipulate a word processor, slow but pretty good. I still drive myself. Properly medicated, I can still get by on most things.
But there a dark side to this disease. It is degenerative. It gets steadily worse. It takes me an hour of concentration to dress myself in the mornings and I usually break a sweat before I'm done. Try tying your shoes using your elbows or putting on a tie and buttoning all those buttons that shirts come with using only your feet and you will have some idea of what I'm talking about.
Enough of the macabre. Let us reverse field here. In a very real sense Parkinson's has been an epiphany for me. It has given me empathy for the plight of others, for the burdens they carry, that I never had before. It has given me an appreciation for what is truly good in my life. It has given me insight. It has brought into high relief for me the idiocy of some of the health care policies we as a nation tolerate.
I can plausibly make the case - and make you believe it - that the Sermon on the Mount, Rousseau's "Social Contract," Roosevelt's "New Deal" and Lyndon Johnson's "War on Poverty" are expressions of the same philosophy, but I cannot begin to explain prescription drug pricing to you.
I take a thing called Stalevo every day. I take four of them, small, oblong, dark pink pills manufactured by Novartis.
Because I have good health insurance, those pills cost me, out-of-pocket, 33 cents each. Without the insurance, they would be $12.50 each. In Canada, they cost $2.35 each. In Mexico, they cost $600 each. Same pill. Same manufacturer.
I have an MBA from a Big-Time, Top-Ten-In-The-World university and I would not know where to start trying to make sense of that.
In doctor-speak, Parkinson's is a progressive disorder of the central nervous system caused by the degeneration of the dopaminergic neurons in the substantia nigra of the midbrain.
In plain English, your brain stops making dopamine, a chemical that provides the electrical connection between your brain and your muscles. Your brain sends a directive to your leg muscle, telling it to move. But the dopamine gas tank is empty. The connection fails. The message is ignored.
One million Americans have Parkinson's and the number is rising. Still, there is no known cause; there is no known cure. You might have it. I hope not. You won't know until 80 percent of your dopamine-making capability is already gone.
There is a lot of research going on, some of it junk science, some of it promising, but the best treatment protocol today remains what it has been for years and years - putting dopamine, that missing chemical, back into your brain, and the best delivery mechanism for doing that is an old one: pills. Stalevo is relatively new. There are others. Some are old and reliable.
Here's the thing: If you do have Parkinson's, there is a fundamental choice you must make. Will you die with it, or will you live? A stranger helped me decide the answer to that question - and he never even knew it.
I was sitting in the drive-through line at Hardees, here in Stuart, waiting for a cup of coffee. Not in the line I was in, but off to the right, parallel to it, was a beat-up pickup and a pull-behind trailer loaded with lawnmowers and string trimmers - and a lot of hand tools - rakes and shovels and such. Obviously, the owner of this truck made his living doing yard work.
While I waited, he came out of the restaurant carrying his breakfast in a bag. He briskly approached the truck, reached the bag in through the open window and opened the truck door from the inside. Then he bent down and removed one of his legs. He tossed that leg into the back of the truck as one would a stick of firewood, smiled and waved at someone waiting in line behind me, hopped up into his truck and drove away.
"Howya doin'?" the girl at the window asked. (People ask me that all the time. And it's not just idle chit-chat. They really want to know how I'm doing.) She handed me the cup of coffee.
"I mean it."�
"You're right. It is wonderful."�
I face each day now with a new outlook. I don't just face them - I try to seize them by the throat and wring the life out them.
When that stranger took his leg off and pitched it into the back of his truck he taught me how to haul a burden, and am the better for it.
About the author
Barnie Day is a former state legislator who served in the Virginia General Assembly from 1996 until 2001. He now is an executive with the Smith River Community Bank in Stuart and previously was Patrick County administrator and owner of Vesta Supply. He is a native of Person County, N.C., and has a bachelor's degree from the University of North Carolina and a master's of business administration from Duke University. He and his wife, Debbie, live in Meadows of Dan.