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Living Large With Parkinson's
It's A Messy Path Ahead, the Author Finds -- But Better With a Map

By Daniel Stark
Special to The Washington Post
Tuesday, June 21, 2005; Page HE01

When I was diagnosed with Parkinson's disease, I had little knowledge of
what lay ahead. Most people share that ignorance. Though the reactions of
the few I told about my condition were typically intense, with exclamations
of great pity or sorrow, this was often followed by a very honest "What
exactly is Parkinson's?"

This proved harder to answer than you'd think. Doctors seemed reluctant to
say much. I was told that everyone's experience was different. But it
seemed a manageable disease, at least to me, at least then.

For six years after my diagnosis, I maintained my frenetic lifestyle, which
mixed big-corporation lawyering with a typically busy family life.

Then came a rapid acceleration of symptoms. I was unprepared for the
ferocity of the assault. For six years I had ingested an increasingly
abundant cornucopia of pharmaceutical industry produce. But the length of
time I got relief from a dose dropped from about four hours to less than 1
1/2 .

When drugs were not effective my speech became soft and stilted, and my
back became the pain epicenter of my world, my muscles contracting into a
big knot. The pain became intense if I stayed in bed more than an hour or
two, making sleep something that other people did.

In order to keep going and present a picture of health by day, I (please
don't try this one at home) started taking more and more medication without
my doctor's knowledge. This did not go well. I suffered periods of
uncontrollable shaking. My hands grew numb.

Within two weeks, I slid from a place where my symptoms were largely under
control to one where they were spinning out of it. I was sleep-deprived, in
severe pain and shifting between flopping like a flounder and experiencing
the utter immobility of a stump.

I soon realized where this whole thing was going. The progressive nature of
Parkinson's meant that in another six months today's experiences might seem
like the good old days. That was tough to imagine, and tough to accept.

Against My Will



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Under the weight of all this, my will weakened. I picked out a particularly
solid looking tree at the bottom of a long hill near my house that I knew I
could drive into at a very high speed. That would be my out if things got
too much to bear. I mention this not to stretch for melodrama or appeal for
sympathy, but because it is true.

I hid behind a screen of e-mail banter with friends. Only my wife, Mary,
was on the inside, and we were estranged.

I had no right to expect help from her. We had each retreated into our own
fortresses some time ago, and she had been dealing with her own problems
with little help from me. But on the day I hit bottom, she was there for
me, looking much prettier than John Wayne but every bit as heroic. She put
her arms around me, and, simply, told me that she loved me.

This time it was the disease that was caught off guard. It thought it had
me down. But the love Mary provided gave me the stuff to fight back. Since
then I have found new things that have helped. While not yet ready to
declare victory, I am definitely unwilling to accept defeat.

Why am I sharing these very private experiences? After I was diagnosed, it
seemed that people didn't want to tell me about what lay ahead for fear of
depressing me. Yes, the facts about Parkinson's can be brutal. But
remaining blissfully ignorant until your world collapses is not a useful
response.

Following is my attempt to sketch a road map for those diagnosed with this
lousy disease. Not the medical part, for which you will receive copious
advice, some of it useful and some of it correct. But about how to think
about your life.

Disclose Early



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Parkinson's disease is caused by the premature death of the brain cells
that create a chemical called dopamine. Dopamine is an enabler that helps
the brain transmit instructions to the muscles. Without it, actions that
require muscular participation -- moving, eating and breathing, to name
just three -- can get dicey.

To get an idea of Parkinson's effect on the body, imagine what happens when
you try to use a motor that has run out of oil. Being an idiot with
mechanical things long before I had Parkinson's, I did that once to a Sears
lawnmower. Everything trembled, there were terrible noises and finally it
just locked up, billowing smoke. It has occurred to me in moments of severe
sleep deprivation that my disease is somehow linked, in spirit if not in
cause, to my mistreatment of that mechanical companion.

Naming this disease after an English physician with a kind-sounding name
does nothing to help people understand it. The name doesn't convey
suffering; it sounds like you can't remember where you left the car at the
mall.

Getting public support to fund research requires something that sounds more
fearful. My proposal is "Spreading Muscle Death." It not only captures what
is going on in a very melodramatic way, it carries a hint of contagion.
Though Parkinson's of course does not spread from person to person, I am
confident that a name that sounds like it might would produce a nice uptick
in contributions.

Mission: Find Roses



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People need to know you have Parkinson's before it really becomes apparent.
This will prepare them for the difficult times ahead. It will also provide
access to one of the (very few) benefits that come with this otherwise
punishing disease: a license to enjoy life.

Anybody with a pulse deserves time to stop and smell the roses, of course.
But life being the way it is, most people don't get it. The undiagnosed do
not find it easy to slow down and make time for themselves. They're healthy
and they are expected to act like it. So they rush from thing to thing,
because that is how we try to balance the modern pulls of family, job, the
search for happiness, etc.

But now you have an opening to pursue your birthright with impunity. Don't
waste it.

Early Parkinson's symptoms are usually minor: A little stiffness, a few
twitches, a vague psychic unrest that weakens inhibitions. In exchange for
these relatively mild burdens, one gets immediate sympathy from those who
think you're already immobile and choking on food. These things will happen
in the future. For now, enjoy the best of both worlds: sympathy and kind
treatment without the bodily degradation. But the benefits begin at
disclosure. Nothing disclosed, nothing gained.

Look around you. Everyone you see is also dying, maybe slowly, maybe not.
But because they don't realize this, they are willing to extend you
kindness while expecting none themselves. Maybe it's some sort of karmic
turn, but the first to know he is dying gets the best treatment. Accept it
modestly, but accept it. There are roses that need smelling. The
opportunity falls to you.

One key "but" here: Disclosing early is important, but that doesn't mean
complaining all the time.

Yours is not the worst situation that one can imagine. There are many
diseases that trump Parkinson's in their misery index, that are the "no
feet" response to your "no shoes" situation. Childhood leukemia, inoperable
brain cancer, quadriplegia, massive third-degree burns . . . the list is long.

So share the news and get on with it. No one likes to be around someone
constantly bemoaning his or her fate. Don't worry; you'll get good
treatment without needing to look like your dog died. It worked for me.

Of course, my dog did die. . . . Actually, both dogs. And a cat. And two
bunnies, my mother, my mother-in-law and. . . . But all of that's another
story.

See? You didn't want to hear about all that. Nobody does.

Be Fearless



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Wouldn't life be great if we were freed from all the little fears that
constrain our behavior? Have you ever wanted to speak your mind at work but
were held back for fear that it would damage your career? Now you can do so
without fear of long-term consequences, because frankly, the long term just
isn't among your problems right now.

The same is true socially. If you see a woman and are struck by her charm
(assuming you are single), ask her out. Some will say no because of your
condition, and some would have said no if your health were impeccable. But
you know better than anyone that rejection will not kill you.

More important, the "you" that emerges once the myriad petty fears are
stripped away will be so impressive that she might even say yes. In fact,
this may be the "you" you should have been all along.

The buoyancy that results from dropping one's fears about what others think
is absolutely startling. The knowledge that time is short, coupled with a
willingness to take risks, unleashes an energy that makes even the need for
sleep seem a pity.

So put this article aside. Go have the time of your life, to the extent
your symptoms permit it. Proceed without fear. Pursue your passions and
whims. You will know when it is time to resume reading this article. And
who knows? By then we may have a cure for Spreading Muscle Death.

Welcome Back



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I hope you had a long and colorful interlude. I assume if you're reading
this that we still do not have a cure, and you're starting to hurt. Let's
look at what lies ahead.

At some point the symptoms start worsening. Your life becomes a function of
the pills you take. The king is Sinamet, the giver of synthetic dopamine,
which lets our muscles respond almost as if we were normal. It can provide
relief for many years.

But, as you are now discovering, your own dopamine-producing cells are
continuing to dive off a cliff. The result is that you need to take more
Sinamet to keep the symptoms at bay.

Without the drug, you become almost immobile. Your body becomes wooden, you
develop roots that hold you to the ground and squirrels begin to look at
you with interest.

On the other hand, take too much medicine for too long and you begin
experiencing those uncontrollable movements that make people with
Parkinson's unwelcome at exhibits of artisan glass.

Threading the needle between stopped and flopped inevitably becomes
trickier. Some doctors can do this much better than others and can buy you
precious extra years. Don't feel bad about switching doctors. It's your
life, not theirs.

The best guide to what lies ahead, alas, is the questionnaire routinely
used to score the progression of the disease.

"Can you dress yourself?

"Do you drool excessively, only at night or during the day?

"Do your feet stick to the floor when you try to walk?

"Can you turn over in bed?

"Have you fallen, or experienced any hallucinations or dementia?

"Have you choked on your food?"

Call me slow on the uptake, but it eventually dawned on me that they asked
these questions because someday I would experience most of these. In a way,
it is a gentle way to reveal the unpleasant future.

In contrast to your experience in the first phase, you are now paying a
serious price for any sympathy you earn. The rose-smelling can be very
difficult and infrequent. But the disease still can be managed if you are
careful.

The advice, then, is clear: Find a good doctor to minimize the symptoms and
continue enjoying what you can. Don't worry about Phase 3; there will be
time enough when it arrives.

Phase 3: Hope



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What do you do when your symptoms become too severe for the ordinary
arsenal of treatments to handle?

There are plenty of things to try: clinical trials with experimental drugs,
brain surgery to implant pulsating electrodes, intensive exercise routines,
etc. All have their adherents, and all can give some relief to some people.
I am investigating them all. But none works well enough to protect you
permanently from the continuing onslaught. So here are your instructions:

Keep your sense of humor and don't lose hope. Fight this thing as long as
you can, and then fight it some more. Maintaining hope as the disease
advances will become hard to do. It is no fun being a stump. Or a fish.

During those times when the drugs have not worked well, I've experienced
what it feels like to be on the inside of a body that the brain cannot
move. It is not blinding agony, but it is a persistent mental and physical
ache I cannot imagine living with for a long time. But would you want to
give up if the cure were only days or weeks away?

How long will it take before a cure is available? To help understand the
answer, I have drawn on my corporate background and constructed a project
management timeline. (Project management timelines, I learned, do little to
make success more likely, but they do make failure easier to explain.)

By assigning reasonable time periods to raise funds, identify promising
areas of medical research, engage in protracted fights with opponents of
stem cell research, perform the research, negotiate with drug companies,
negotiate with the FDA, perform clinical trials, again and again, and then
file papers seeking approval, and wait, I have determined that a cure could
be made available in -- bear with me here while I do the calculations . . .
46 years.

Wait, I almost forgot: George W. was reelected. He finds it politically
expedient to accommodate the noisy, increasingly theocratic right wing of
his party by blocking critical research that would use stem cells. (See,
now that I'm sick I'm saying all the things I used to hold back. I am
livin' large!) Add four years to account for his second term and the
lingering damage he is likely to do, and you have an even 50 years.

Fifty years is too long for most of us to wait. I'll be dead of old age by
then anyway. Hopefully, we will have future presidents that have bigger
brains (sorry, I can't stop myself) than the incumbent.

But then, other countries are not constraining their stem cell research.
Japanese companies are in the game, adding their technical prowess to the
hunt. That ought to save a decade, easy. Great Britain's in on the chase,
too; knock off another five years.

And money is time; with more funding, we can shave more years from the
tally. Who knows how much sooner we can make it happen?

(Recall that contributions to your favorite Parkinson's foundation are
tax-deductible in this life, and may improve your accommodations in the next.)

Eventually we will beat this, or our successors will. Those with the
disease can then rejoin the mainstream and die of something else, ideally
much later. Death may be our common destination, but there are different
roads one can take there.

There's a road I know of that would allow me enough time so that I would be
able to walk a bit further with my kids, discussing writing with my son and
watching my little girl, her eyes dancing with mischief, as she picks
dandelions and dodges my efforts to prevent her blowing their feathery
seeds on our lawn. It's the first turn on the left, just past a cure for
Parkinson's. I'd like to take it.

But first, I have a task to tend to. I am finishing watching the sun rise
in St. Thomas (yes, the St. Thomas in the U.S. Virgin Islands). It looks
like another beautiful day, so it may be difficult to squeeze in even a
modest dose of self-pity before brunch. In fact, I may not even try. If it
rains tomorrow I can try to make it up. ·

Daniel Stark is a New Jersey writer. He previously wrote "Silence of the
Bunnies" for the Health section.

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