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Living Large With Parkinson’s
Thursday June 23, 2005
It’s A Messy Path Ahead, the Author Finds -- But Better With a Map
June 21, 2005(The Washington Post) - 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
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.
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
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.
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.
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
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.
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