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.
One
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 ten 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.”
“You’re
certain?”
“I’m
certain.”
“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?”
“Alzheimer’s?”
“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.)
“Parkinson’s?”
“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 (thirty-three cents) each.
Without the insurance, they would be $12.50 (twelve
dollars and fifty cents) each.
In
Canada, they cost $2.35 (two dollars and thirty-five
cents) each. In Mexico, they cost $60.00 (sixty
dollars) 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, in
Stuart, Virginia, 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.
“Never
better!”
“Really?”
“I
mean it.”
“That’s
wonderful!”
“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 the day by the throat
and wring the life out of it. 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.
--
March 5, 2007
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