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A Stranger to Himself: Living With Parkinson’s Disease
For the last 15 years, the author, an English literature professor, kept his disease closeted: His practice had been to say nothing about the Parkinson’s publicly and, with the help of the pills, to try and behave as normally as possible. Then at a large By Kermit Moyer
Comments () | Published July 28, 2011
The author, once an American University professor, was diagnosed with Parkinson’s in 1995. Photographs by Jarrod McCabe

The official diagnosis came at the tail end of winter break. The spring semester hadn’t started yet at the university in DC where he was completing his three-year term as chair of the Literature Department—a bureaucratic burden he couldn’t wait to get out from under—and he was still tan from the week he and his wife had spent in Key West.

It was 1995. He was 51; Amy, his wife of 22 years, was 45. He would look at Amy’s glowing face, the face he’d fallen in love with when she’d walked into his classroom on the first morning of the first class he’d ever taught at the university—that lovely face with its high cheekbones and the endearing gap between her front teeth—and wonder how he could ever have been so lucky. Because they had no children, they gave their attention to each other, and life, they felt even in their secret hearts, was good.

It was embarrassing how little they really knew about the disease. At the time of his diagnosis, they knew only that it was neurological and that, although not necessarily fatal, it was incurable and progressive. He had always associated it with a tremor of the hand or the head, but the fact that he displayed no tremor proved nothing because the symptoms could vary markedly from one person to another.

They had learned you couldn’t detect it with a CT scan or an EEG or MRI. Which is why he’d been given the little pink pills. The diagnostic logic of the little pink pills was unassailable: If they relieved the stiffness he had been feeling in his right arm and allowed him to write legibly in longhand, it could only mean that what the pills were providing—a substance called dopamine—must be the thing he was deficient in.

So he’d taken the pills with them to Key West, along with a carefully drawn-up schedule that involved increasing the dosage day by day and then decreasing it after maintaining the full dosage for three days. It was up to him to monitor how he felt, whether his right arm swung easily as they strolled down Duval Street or whether it continued to hang stiffly by his side, and whether he was able to write a legible postcard or jot down a phone message so Amy could read it.

Dopamine, it turned out, was what allowed nerve cells to communicate with one another. A lack of dopamine meant that cells in your brain that should have been producing it no longer were; in fact, they were dying out, and they were apparently irreplaceable.

The result was what the doctors referred to as a “movement disorder”—he’d been told that at its most advanced stage you simply froze up. On the other hand, this method of diagnosis was in itself evidence that the symptoms could be ameliorated with pills. So as the last doctor—the one who had made the diagnosis—rather hopefully pointed out, it was really a good-news/bad-news situation. Of course, the doctor had to admit that the good news was compromised by the fact that over time the little pink pills gradually lost their efficacy.

But ultimately the news was bad for everyone, wasn’t it? At some point the efficacy of everything wore out. And, thinking that, he took a certain satisfaction in the fact that everyone’s span of years was equally finite, if not of equal length.

During that week in Key West, they had hardly known which outcome to root for. Surely it would be better if the pills didn’t work, because that would mean that at least he didn’t have Parkinson’s disease, but then again, Parkinson’s could be better than whatever else it might turn out to be, and at least then they’d know for sure what it was. Because in a way, they told each other, the worst thing was not knowing. They knew better now.

In the 15 years since he’d been diagnosed, the disease had progressed to the point that without the pills he couldn’t walk. The only time he was without them was in the middle of the night—then he could barely move his feet to go to the bathroom. He’d have to more or less drag himself along by holding onto the wooden rails they’d had installed along the hallway. He’d recently begun to keep a plastic urinal next to the bed to avoid having to make the trip to the bathroom. Even when he was medicated, doorways and thresholds presented a risk that more than gave him pause.

Festination, they called it—the clinical term for the way you could freeze up, your legs trembling, your feet taking little stuttering steps, as you tried to negotiate a passageway or cross a threshold. His body’s momentum would continue to carry him forward while his legs shook and his feet stayed put. Then, if there was nothing for him to grab onto, he would fall down—usually on an already banged-up knee—and have to hold a bag of ice against the knee for 15 minutes every half hour for the next several hours if he expected to be able to jog the next morning on the treadmill at the gym.

His neurologist had prescribed a daily dose of aerobic exercise because she said research showed that exercise helped ease the symptoms and possibly slowed down the disease’s progression—as well as doing a lot of other good things. She was sure he’d been doing as well as he’d been doing because of his regular exercise. And he’d come to feel he couldn’t do without the gym—it had become the only time he felt at one with his body.

So six days a week he did a 50-minute workout that combined a stationary bicycle with an elliptical machine and a treadmill. He’d watch himself in the mirrors and admire the fluidity of his movements. He liked looking at himself, especially if he was on the treadmill directly under the long fluorescent light that made his hair look shiny and thick. People told him he didn’t look anything like his age. Although there was a little gray in his mustache and beard, for some reason the hair on his head refused either to fall out or turn gray. He looked about 20 years younger than he was, like a man in the prime of life.

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He owed his time at the gym to the pills. Without them, he’d have had to use a walker or wheelchair. But the pills were complicated. Although he had started out needing to take only a couple a day, by 2010 he was taking two to three every 2½ hours, and they were to be taken not less than an hour after a meal nor less than half an hour before a meal, especially if he was eating protein. This could be bypassed to some extent with a form of the drug that dissolved under his tongue and that was faster-acting but also seemed to wear off more quickly.

The timing of this schedule was dictated each day by exactly when he took the first dose. Before he could safely make his way from the bed to the bathroom and from there to his study, he had to lie in bed and wait at least 30 tick-tocking minutes while the first dose of dopamine passed from the saliva under his tongue to his bloodstream to his brain so that his neurons could once again relay his wishes to his legs and he could walk—even though, lying there in bed, he could move his legs without any problem. This complicated regimen, along with the amphetamine-like side effect of the drugs, gradually but radically altered not only his sleeping habits but the whole diurnal rhythm, the entire pattern, of his daily life.

His current procedure was to take his first dose at 3:30 am and rise at 4, being careful not to wake Amy. A few years back, he’d developed a daily routine, which had lasted more than a year, of making pancakes for himself after he got up. He made them every day because he was a creature of habit given to rote repetition, something he was grateful for now because it was necessary to repeat his pill regimen methodically day after day. He’d take his second dose at 6, just before going back to bed for another two hours. As a former night owl, he found it hard to believe he was going to bed these days at 9 pm—and that he was now an early riser.

Next: When the disease takes over language


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Posted at 12:42 AM/ET, 07/28/2011 RSS | Print | Permalink | Comments () | Articles