TAMING MY TREMOR

This is a story about a miracle of modern medicine, and about the quiet heroism of anyone who endures chronic illness.

Three things that Joel Havemann, the author of this article, is too modest to say about himself: He’s one of the best-loved people in his workplace, the Washington bureau of the Los Angeles Times, because he’s both hard-working and easygoing, tough and gentle at the same time. He’s very good at what he does, which is helping newspaper reporters find good ideas and turn them into clear, engaging stories. And, improbably, he’s an accomplished gambler; his idea of a perfect weekend, when his children aren’t playing soccer, often involves a casino with blackjack tables.

For almost 15 years, Joel’s family and co-workers got used to living with a man who was slowly wasting away. His face grew gaunt. He ate gigantic bowlfuls of cut-up fruit--which also helped optimize the effect of his medications--but continued losing weight. He stole away for midday naps, but still tired easily. His gait became alarmingly unsteady. He sometimes crashed into filing cabinets. (We grew accustomed to the noise, but it frequently startled visitors.) Despite all that, he insisted on putting in a full workday, and on attending every school play and soccer game as well.

Joel’s surgery didn’t cure his disease--it wasn’t that kind of miracle--but it worked some wonders nonetheless. He’s no longer colliding with filing cabinets. He’s gained a pound or two. His face has filled out. He has his smile back. To those who love him, that’s a pretty nice miracle right there.

-- Doyle McManus, Times Washington bureau chief

*

The last time my wife saw me on the morning of March 30, she understandably feared the worst. I was in a wheelchair on my way to the radiology lab at the Cleveland Clinic. Soon I would undergo brain surgery for Parkinson’s disease. A sedative had left me groggy. My head, newly shaved to decrease the risk of infection, hung down under the weight of a metal “crown” fastened to my skull by four bolts. Blood oozed out where the bolts had penetrated the skin. My arms were folded against my chest and my legs were curled underneath me, in a sort of upright fetal position. At 6-foot-1 and naturally skinny, I looked to Judy as if I weighed 100 pounds.

And the day--probably the most physically demanding of my life--had only just begun. The surgeons had yet to tunnel into the farthest reaches of my brain on either side, guided by computers that translated brain activity into sound. They planned to leave behind an electrode at the end of each tunnel and, during a second day of surgery a week later, wire the electrodes under my skin to two batteries implanted in my chest. If all went well, a small amount of electricity in the electrodes would lift me from the shakiness of Parkinson’s to the steadiness of ordinary people. If it went seriously wrong, I could have a stroke and die.

It had taken me 14 years of Parkinson’s disease to get to this point. In 1993, when I was the Los Angeles Times’ correspondent in Brussels, I had met in France with Dr. Pierre Pollak, one of the surgeons who had pioneered the operation. Although I had been diagnosed with Parkinson’s only three years earlier, the tremor--which manifested itself in my legs, feet, arms and hands--already was pronounced. When the tremor was in full flower, I couldn’t write or hold a glass of water or stand in one place without bouncing up and down. Dr. Pollak said I was a good candidate for the operation.

I didn’t seize the opportunity. At the time, the surgery was new and experimental, and its long-term consequences unknown. Besides, given a choice, no one would want somebody poking around in his brain. The brain is not something to be trifled with. Now, under carefully controlled circumstances, brain surgery has become almost routine. The task of cutting into the brain and hitting the desired target--without a fatal encounter with a blood vessel or another vital structure--has been made possible by machines that can “see” the body’s soft tissues. But the prospect is still so frightening that I put it off for years. It took the progressive effects of a particularly pernicious, inevitably disabling and often deadly disease to drive me to it.

Parkinson’s cripples slowly. It’s not like heart disease and stroke--which strike suddenly and with full, often lethal, force--or even cancer, which causes acute pain. Parkinson’s symptoms build the way grass grows--imperceptibly. The tremors, the tight muscles, the shuffling movements: all seem to be the same one day as the day before. But they aren’t. They’re always worse. With Parkinson’s, there’s no remission, no time when you can ignore it. It’s ever present, ever progressing.

The disease was named after James Parkinson, a London physician of two centuries ago who saw similar symptoms in three of his patients and in three others whom he observed at a distance. As he wrote in 1817: “So slight and nearly imperceptible are the first inroads of this malady, and so extremely slow its progress, that it rarely happens that the patient can form any recollection of the precise period of its commencement.”

Although Parkinson’s is one of the best understood of neurological diseases, remarkably little is known about it. How many Americans have it? Estimates range from 500,000 to 1.5 million. Is it an old person’s disease? Yes and no. The average age of diagnosis is 60, although many are much younger. I was diagnosed at age 46; Michael J. Fox, probably the most famous person after Muhammad Ali with Parkinson’s in America, was just 30. What causes it? Researchers believe that a gene or combination of genes confers a tendency to develop the disease, and that an environmental trigger is necessary.

Deep in the brains of people with Parkinson’s, the cells that produce a chemical called dopamine die mysteriously over a period of many years. Dopamine is a “neurotransmitter” that delivers a message from one brain cell to the next along a particular circuit. If dopamine’s message fails to get through, the consequences are tremor, slow movement, bad balance and poor gait. As the disease progresses, it does not make for a pretty sight. The list of possible symptoms goes on and on. Freezing spells--virtual paralysis. Frequent falls, for those who can walk at all. An inability to get food to one’s mouth. Drooling. Incontinence. Depression. Dementia. Parkinson’s does not kill directly, but its symptoms can be indirectly fatal. Sufferers can die of infections resulting from food aspirated into the lungs or from the effects of multiple falls.

The standard treatment is a drug called levodopa, which the brain converts to dopamine. Almost miraculous at first, it becomes less reliable as the years go by. More than that, it causes uncontrollable, jerky movements that eventually seem worse than the disease. Parkinson’s has no cure. Leading researchers have been predicting one since I was diagnosed 14 years ago. For 14 years we have been disappointed.

When I was diagnosed in 1990, the promise of a cure lay in dopamine-producing nerve cells from aborted fetuses. Two surgical trials to implant fetal cells in the Parkinson’s brain found that they often did as much harm as good. Now stem cells, which can theoretically generate endless supplies of healthy dopamine-producing cells, are the great hope. They’ve worked well on animals but are untested on humans. Researchers still have much to learn: what kind of cells to use, where to insert them and in what numbers. Federal policy limiting the availability of stem cells won’t make the answers any easier to find. So I’ve come to the conclusion that there is not likely to be a cure for Parkinson’s disease anytime soon. The disease--like the brain itself--is too complicated for that.

For nearly 10 years after my meeting with Dr. Pollak in 1993, I didn’t give his operation much thought. My symptoms worsened, all right, but glacially, and levodopa pills every two or three hours enabled me to keep working and doing most of the other things I enjoyed. But by early last year my symptoms were interfering seriously with my ability to earn a living and raise a family. At work as an editor in The Times’ Washington bureau, I typically spent an hour or two every day unable to function. At home I lacked the energy to give my children--Anne, then a college junior, and Margaret and William, both high school seniors--the attention they needed and deserved. In the spring I was able--barely--to serve as manager of Will’s soccer team for one last season. He had to drive to most games; I couldn’t trust myself behind the wheel for more than a few miles.

I had become a slave to my levodopa pills. I was losing weight--and strength--as I tried to leave my stomach empty during the day so that the medicine could get through. In particular, I avoided protein until dinner because protein interferes with levodopa’s passage into the bloodstream. So when I ate breakfast or lunch, it was mostly protein-free fruit.

I had seen enough people with advanced symptoms. They had lost control of their bodies. They could live at home, but only if a spouse or other loved one did nothing but tend to them. Otherwise they had to live in institutions. Which was worse: sacrificing a second life to the disease, or living out one’s final years without purpose, without hope? It was a choice I wasn’t ready to make. Life had been too good. Unwilling to wait for a cure that I didn’t expect, I began looking for the next best thing: a therapy that would mask Parkinson’s symptoms more effectively than levodopa.

The operation pioneered by Pollak relies on the fact that dopamine inhibits some brain circuits. Without enough dopamine, these circuits are overactive, and when one circuit in particular over-performs, the result is the Parkinson’s tremor. In the 1980s, the standard surgical treatment involved killing some of the cells in the affected circuit. That slowed the circuit--and therefore the tremor. But the operation was irreversible. If a better treatment came along that needed an intact circuit, the patient was out of luck. Almost by accident, the French surgeons discovered that they could slow the overactive circuit with mild doses of electricity. Electrodes implanted in the brain could inhibit the circuit without damaging it. The surgeons did not know why it worked, only that it did. They called it “deep brain stimulation.”

I worried that my chance for a successful operation might be slipping away. Some clinical trials of other approaches to Parkinson’s disease had arbitrarily divided their subjects into two age groups--above and below 60--and found that the over-60 set fared appreciably worse. I turned 60 in July of last year.

So I went to my neurologist--Stephen G. Reich of the University of Maryland Medical Center in Baltimore--with my willingness to try deep brain stimulation. Dr. Reich believes in providing information and letting his patients make up their own minds. My decision was surprisingly easy. Dr. Reich steered me to a couple of surgeons, one at the Cleveland Clinic. Another neurologist I knew said the Cleveland Clinic neurosurgeon was probably the best in the business, a reputation that an appearance on “60 Minutes” had done nothing to tarnish. That was good enough for me. Dr. Ali Rezai, who had performed about 500 deep brain stimulations with no serious failures, was my surgeon.

The cleveland clinic scheduled my surgery--provided that I pass a battery of tests designed to weed out patients unlikely to benefit from the operation or likely to be harmed by it. I flew to Cleveland for two days in early March for brain and heart scans, a chest X-ray and basic blood work. The most interesting tests were psychological. “The surgery is long and arduous,” said Cynthia Kubu, a neuropsychologist, “and you need to be able to cope.”

The tests reminded me of parlor games. The test administrator read me several brief stories and asked me to repeat as much as I could remember. He read me lists of as many as eight digits and asked me to repeat them backward. He asked me to say as many words beginning with “r” or “g” as I could spit out in 60 seconds. Dr. Kubu described my score on the “dementia rating scale” as “nearly perfect,” which meant not that I was quickly going nuts but that I was less nuts than most people my age. She deemed me “an excellent candidate” for surgery. I would need to be conscious during the operation to help guide the surgeon. To make the experience less arduous, she said I could take some compact discs to the operating room and listen to music while the surgeons were tunneling into my brain. My choices: delicate piano sonatas by the 18th century Italian Domenico Scarlatti and Tchaikovsky’s 1812 Overture, complete with cannons.

There was one last hurdle. Three days before I was to check into the hospital, my insurance company was still trying to deny coverage. If I was healthy enough to still be working, it argued, then I was too healthy to have the surgery. Never mind that I was just about at the end of my rope at work, that I could have retired on disability years ago. The insurer seemed determined to penalize me for my fortitude. Dr. Rezai himself spent a good part of that Friday dickering with the company, and the insurer finally relented. Still, I received an ominous notice from the Cleveland Clinic after the operation. “What you owe now: $116.37,” it read, referring to what was left over after the insurer paid most of the costs of an office visit, a chest X-ray and an MRI of my brain. “What you may owe later if not covered by insurance: $134,236.15.”

On Sunday of the following weekend, Judy drove me to Cleveland, where we were met by Bunli Yang, my college roommate, who had driven from Toronto. I checked myself into the clinic, and the next morning Dr. Rezai’s nurse came to get me at 6 o’clock. She didn’t have to wake me. I had been awake since before 5 and was washed and ready to go. I had been able to sleep, a sign that I was comfortable with my decision to choose surgery. But Judy, who had joined me, described me as cross and irritable. Even if the rest of my life hadn’t been on the line, I had a right to be. Forbidden to take any medicine, I was in full shake. I could hardly sit down; my muscles quickly grew so rigid that they practically propelled me out of my chair. I asked the nurse if I could walk to the operating room rather than travel by wheelchair, as is standard procedure. She decided I could walk on my own.

In a holding area, Dr. Andre Machado, a Brazilian understudy to Dr. Rezai, hooked up an intravenous tube to a vein in my arm and pumped in enough sedative to put me comfortably asleep. Next he shaved my head and bolted the “crown” onto my skull in four places. While I was on my way to the radiology lab after a CAT scan and another MRI, Judy and Bunli got their last look at me and wondered if I would ever recover.

I was awake enough that I could get myself onto the operating room table, where a clamp grabbed hold of my “crown” and held my head motionless. I’d be hard-pressed to describe the room. I could see only some of the ceiling and the bright lights aimed at my head. Everybody--five or six doctors, two or three nurses and a couple of technicians--seemed to be talking at once.

Crucial to the operation is the machine that converts brain activity into sound. The machine guides the surgeons as they look for the optimal place to deposit the electrodes. Their target, which is called the subthalamic nucleus, is about the size and shape of an almond. Fortunately, according to Dr. Kenneth Baker, who conducted this part of the procedure, every part of the brain makes a distinctive sound. The thalamus, one of the last structures before the target, makes a fairly steady “whoosh.” That is followed by a region of the brain that is empty of any structure at all--just a few scattered cells. It makes little sound. Then suddenly comes the bedlam of the subthalamic nucleus, a sure sign that the surgeons are in the right neighborhood. Dr. Baker calls it Grand Central Station at rush hour.

Before the operation could begin, Dr. Rezai and the others studied the MRI and the CAT scan. They would have to drill about a 4-inch-long tunnel in a straight line to Grand Central Station. It wasn’t good enough just to be in the station, however. They had to be on the right track. That meant the thickest part of the subthalamic nucleus. And the maps that Dr. Rezai was working from--the MRI and the CAT scan--were about as detailed and precise as the maps of the world shortly after 1492.

By late morning, Dr. Rezai was ready to go. He inserted the “probe”--a wire about the thickness of a human hair--into the dime-sized hole that already had been drilled on the right side of my skull, just behind the hair line. Very slowly, he screwed it into my brain at an angle calculated to hit the sweet part of the subthalamic nucleus. Down he went, all the while listening for the sounds from my brain cells. About an inch from the target, he withdrew the wire and inserted a tiny electrode.

Dr. Rezai progressed slowly and cautiously, using hydraulic pressure to propel the electrode, stopping to listen every time it passed another cell or two. Finally the electrode reached Grand Central Station. But was it the right track? Dr. Rezai needed me to help determine that. He sent a little current to the electrode. I reported that the inside of my left upper arm tingled as if I had hit my funny bone. Just above the elbow, my arm felt as if somebody was pinching it and tugging on it. That wasn’t supposed to happen.

Dr. Thyagarajan Subramanian, the neurologist who had been assigned to my case, was standing at my left side. He yanked my left arm in all directions to see how my brain cells responded. Dissatisfied with the result, Dr. Rezai moved the probe a little deeper. No better. He tried positioning it a little shallower. Same result. Finally, about an hour after the first probe penetrated my brain, he admitted defeat, pulled back and studied his maps some more.

None of this hurt. The brain is crammed with as many as 100 billion nerve cells, but, luckily, they aren’t the sort that register pain. That doesn’t mean I was comfortable. I was growing shakier and more exhausted. My arm and leg muscles were so stiff that, if my head had not been bolted to the table, I might have tried to run away. I tried my usual trick for holding still--taking deep breaths while distracting myself by counting backward silently by 13s or 17s or any prime number. Sometimes this worked. When it didn’t, Bob Baracz took over. The operating room technician, Baracz took Dr. Subramanian’s place at my left side and brought much of his 230-pound frame to rest on my shoulders. It didn’t hurt. In fact, it was downright comforting, and I was sufficiently steady that Dr. Rezai could continue--a low-tech solution in a high-tech environment.

Shaking wasn’t my only discomfort. My mouth was bone dry because, as is usual with surgery, I could have nothing to drink beforehand. Two nurses took turns standing over my right shoulder and wiping my lips and even the inside of my mouth with a moist sponge attached to a stick. I was hooked up to a catheter, and occasionally a drop or two of urine would pass into it. That produced a sharp pain that made me shake more. My CDs were of no real help. I could barely hear the Scarlatti sonatas over the din of the operating room, and even the 1812 Overture emerged only occasionally from the commotion.

Dr. Rezai knew he hadn’t been far off with his first penetration into my brain. Only a slight adjustment would be necessary. But in which direction? He examined the evidence and made his choice. Down the probe went once more. This time he hit the right track. He fed some current to the electrode. I felt no tingling, no tugging. Dr. Subramanian jerked my left arm and got the desired auditory response from my brain cells. Dr. Rezai withdrew the probe and substituted an electrode with four contacts, each one-sixteenth of an inch long, each trailing the one in front of it by another one-sixteenth of an inch.

After that, the operation proceeded uneventfully. Brains, like noses, are generally symmetrical, and so the proper angle on the left side of the brain was the same as the angle that worked on the right side. Now that I could imagine the end, I could more easily endure the shaking. As Dr. Rezai was completing the final pass, he asked me to repeat the days of the week as a way of checking that my speech was not impaired. “Lundi, mardi, mercredi,” I snapped back. The doctors and nurses groaned. But Dr. Rezai got the joke: “It’s French, it’s French.” At that moment he knew, and I knew, that I had come through the operation unharmed.

That was the last time my services were needed, and the anesthesiologist knocked me out. The next thing I knew, I was waking up in the intensive-care unit. Among the other patients, I seemed lucky. I couldn’t actually see anyone else; curtains separated us. But I could hear the poor fellow to my left occasionally utter a shrill scream. The gentleman to my right didn’t make any noise at all, but his doctor would stop by every hour or so and shout, “Melvin, Melvin, say something, Melvin.” Dr. Rezai arrived for a few minutes to examine his handiwork and seemed satisfied. He had told Judy and Bunli that my tremor was just about the worst he had seen in his 500 patients.

I dozed on and off until 4 or 5 in the morning, when I woke up to realize something extraordinary: I was scarcely shaking. My most recent levodopa pill had long since exceeded its three hours of effectiveness, and I was almost steady. How could this be? There were still no batteries to feed electricity to my electrodes, but it was as if I were already plugged in. Only later did I learn that the mere insertion of the electrodes frequently disrupts the circuits through the subthalamic nucleus to tame the tremor--temporarily. Sure enough, the tremor slowly came back over the next few days until it was its old, familiar self. But I took the temporary improvement as a sign that the electrodes were in the right place.

Shortly after breakfast I was released from intensive care to the neurological ward. By then, Melvin, who hadn’t made a sound the previous night, was chattering away with his doctor and nurse. I guess he’s just not a night person. I was discharged from the hospital on Thursday after one night in the neurological ward. By Saturday I had recovered enough to take a two-hour bus tour of Cleveland.

My new electrodes wouldn’t do much good without a power source, and first thing Monday morning I was back in the hospital for the second operation: the installation of the batteries. The operation itself was easy, at least for me, because I was unconscious throughout. I presented something of a challenge to Dr. Rezai, however, because I didn’t have a lot of extra room in my chest to store a couple of batteries. These are no mere watch batteries. A rounded 3 inches by 2 inches, they are about half an inch thick and protrude noticeably just forward of my underarms. The collar on a dress shirt points right at them. Dr. Rezai had to stretch my skin to cover them, but the scars have all but disappeared. The batteries should last about three years before having to be replaced.

When I came to, I was very shaky. I took a levodopa tablet, then another and another, four in the first two hours. Nothing. I couldn’t get up and walk around to relieve the stress because I was still hooked up to an IV and a catheter. So as I lay on my back on a gurney, Judy took both of my feet in her hands and, for much of the next seven hours, helped me pedal as if I were on a bicycle. That was a tremendous relief. Finally, after seven pills, Judy obtained Dr. Rezai’s approval to give me a dose of sleeping medication. I didn’t sleep long, but when I woke up, the levodopa had finally tamed the tremor, and I was no longer shaking out of control. I checked into a room in the neurological ward and survived one last night in a double room that I shared with a man from Bosnia who apparently had had a stroke.

I could feel and see the two batteries in my chest and the wires running under the skin through my neck. They were connected to the wires from the electrodes, which passed through the plastic plugs that would forever cover the holes in my head. But still I wasn’t ready to have the batteries turned on. That would have to wait another couple of weeks so that my system could return to its natural state. Until then, Dr. Subramanian, who was in charge of this critical step in the process, would not know how much juice to give me.

By then the kids had mobilized. Anne, completing her senior year at Colorado College, was too far away but called often. Margaret, 18, probably the best driver in the family, flew in from St. Louis, where she was a freshman at Washington University, so that she could drive the six hours home to Washington from Cleveland. Will, a freshman at Amherst College in Massachusetts, got a ride with a friend and was home to see us when we arrived.

After two weeks of resting at home, Judy and I headed back to Cleveland for the fateful date with Dr. Subramanian. This would be the payoff, the appointment that would determine whether all of this had been worth it. So far everything had gone by the book. Was fate reserving one last diabolical twist for me? At 1 p.m. on April 22, I was in a tiny, austere room furnished with a small hospital bed, a desk with a chair with caster wheels, three plain chairs and drab curtains on the windows. The room seemed inadequate to the task that was to be completed in it.

Dr. Subramanian asked me to perform a number of standard tests for Parkinson’s patients. While sitting, I held my arms outstretched in front of me with fingers wide apart. I touched my thumb and forefinger together as fast as I could. I slapped my hands alternately palms up and palms down on my thighs. I reached as far as I could to touch his finger and then my nose. Standing, I walked a straight line, first in ordinary strides and then with one foot immediately in front of the other. I jumped up and down and hopped on one leg and then the other. Finally, I recited the Pledge of Allegiance. “Now I’ll turn you on,” Dr. Subramanian said with a sly grin. He took out an inch-thick plastic box about the size of the page of this magazine with a computer screen on the front. From this he removed a small wafer that was connected by wire to the mother ship. He instructed me to hold the wafer over the battery on the right side of my chest. Issuing commands on the computer screen, he communicated through the wafer to the batteries via radio waves, jacking up the juice a little at a time.

Finally the current reached a level at which my arm tingled, rather as it had during the operation to implant the electrodes. The tingling soon went away as my body got used to that voltage. He locked in at that level: 3.7 volts. (By contrast, a double-A battery delivers 1.5 volts.) He had activated only the deepest and the shallowest of the four contacts, leaving the middle two in reserve. Then he went through the same drill with the left-side battery and arrived at the same outcome: 3.7 volts.

A few hours later Dr. Subramanian put me through the standard tests one more time and pronounced the voltage just about right. He could raise it a little bit higher, he said, but the higher the voltage, the quicker the batteries would need to be replaced. I should no longer need levodopa to combat the tremor in the short term, he said. But I should keep taking it anyway, four times a day, because it is thought to have a beneficial effect in the long term.

At last, after two arduous operations and two weeks of suspense, it was time to celebrate. First I called our kids to tell them all was well. Then Judy, Bunli and I headed for dinner in Cleveland’s Little Italy neighborhood. I felt exceptionally steady as dinner began and--more stunning yet--just as steady as it ended.

Back home, I felt so much better that it took me a few days to realize that I still had a tremor in the right leg. It was no big deal compared to what I had experienced before, but it was noticeable and annoying. It was for just such a contingency that Dr. Subramanian had asked me to see him again on May 27. He listened and looked and decided that a little more voltage would be a good trade-off. At 4.7 volts (up from 3.7) he found the tremor gone; so 4.7 it was. The next day was my first tremor-free day in about 15 years.

Dr. Subramanian sent me home with some paraphernalia from Medtronic, the Minneapolis-based company that makes the deep brain stimulators. There were two heavy-duty magnets that, when slid along the batteries, would turn them off and then on again. I have yet to turn the batteries off. I can’t think of an occasion when I would like to be shaking violently, but my neurologists sometimes turn off the juice to assess my body’s behavior without the stimulation.

If a million Americans have parkinson’s disease, then at least 975,000 of them have not had deep brain stimulation. Medtronic estimates that only about 25,000 such operations have been performed worldwide. Nobody keeps good data, but I sense that only a handful of patients have suffered serious consequences from the procedure. Slurred speech seems to be a common complaint.

Why, then, have so few Parkinson’s patients had the surgery? A lot of them probably don’t know about it or don’t live close enough to surgeons who can do it. Fear, no doubt, is a factor, as it was for so many years for me. Cost is another; it runs into six figures for patients without insurance or whose insurance companies refuse to pay. Age is still another. Thousands of Parkinson’s patients are too old to go through the ordeal; for others, Parkinson’s seems trivial next to their other illnesses, such as cancer. At the other end of the scale, some people are so young and healthy that the operation is not worth the effort. But this surely leaves thousands upon thousands of people for whom deep brain stimulation offers the best hope of relief.

Researchers, meanwhile, are busily pursuing the possibility of applying deep brain stimulation to a variety of other brain disorders, particularly those in which certain circuits of nerve cells are overactive. So far, the Food and Drug Administration has specifically approved the procedure only for familial tremor and Parkinson’s disease. Beyond that, surgeons may sometimes use it to treat dystonia--intractable muscle contractions--and pain that can’t otherwise be controlled. Next up may be a way to tame epilepsy. More intriguing still, researchers are looking at deep brain stimulation to treat disorders that are manifested in behavioral as opposed to physical symptoms: obsessive-compulsive disorder, depression, Tourette’s syndrome, even obesity.

The scientific obstacles are not all that the researchers must surmount; they’re also haunted by the overuse of shock therapy in decades past. “There are huge stigmas from abuses of the ‘40s, ‘50s and ‘60s,” says Dr. Joshua Rosenow, a neurosurgeon at Northwestern University and a member of the American Assn. of Neurological Surgeons. He says deep brain stimulation will never be more than a last resort for patients who have exhausted other treatments.

I’m just grateful that it works for Parkinson’s. In my tremor-free state, I can drive on the highway again without worrying that I’ll suddenly start shaking before the next exit. I’m no longer a slave to the levodopa that I had to take every two to three hours--on an empty stomach. I can eat real food--not just fruit--during the day, and I’ve even gained a little weight. I can go to a three-hour show without worrying that I’ll have to leave before it’s over. I can stay out at night until I feel like going home instead of when my tremor announces that it’s time to go. I can take a shower, cut my nails and floss my teeth first thing in the morning, with no medication.

Most of all, I’m no longer self-conscious. It has been months since an old lady has offered me her seat on the bus. No longer do the checkout clerks at the grocery store wonder why I can’t retrieve a dollar bill from my wallet. My self-confidence had drained away as I grew shakier. Now it’s back; I stand tall and feel proud. At an office party recently, a reporter with whom I have worked for years was marveling with Judy about how much better I looked. “He’s tall,” the reporter said in wonderment.

Will these benefits last? The few scientific studies of the long-term effects of deep brain stimulation--performed in France, which has the longest experience with the procedure--suggest that they last at least five years. The few people I know who have had the operation have not reached their fifth anniversary yet. It makes sense to me that the electrodes will grow less effective as more dopamine-producing nerve cells die. Up to a point, doctors can compensate by cranking up my voltage. But when all the nerve cells are gone, and there is no dopamine left to inhibit the tremor circuit, will any amount of electricity control the tremor? I doubt it. I’m counting on never reaching that stage.

Deep brain stimulation has not cured me. I still have Parkinson’s disease; my dopamine-producing brain cells are still dying. The operation has not even conquered all of the symptoms, only those that result from one overactive circuit that passes through the subthalamic nucleus. I still have trouble with balance and gait, especially when I’ve recently taken some levodopa. In particular, I have difficulty walking slowly. I bend at the waist and the knees, making my torso lean forward, and sometimes I have to run just to keep my feet under my center of gravity. As before, I can’t sleep more than about six hours a night. I had hoped this problem was a side effect of all the levodopa I’d been taking, but now I realize that it must be a consequence of the disease itself. As a result, I’m sleepy most of my waking hours. And, inexplicably, some new problems have cropped up. My eyes seem much more sensitive to light, and I squint a lot. I don’t yet know the cause, but I have bought the first pair of prescription sunglasses I’ve ever owned.

It seems almost churlish to list these concerns next to the conquest of the tremor. People tell me how brave I was to have submitted to such an invasive procedure. I reply that it would have taken more courage to face the future without it. Having the surgery is uncomfortable and slightly risky; not having it is a sure-fire formula for losing control of your body, of being totally dependent on others for basic tasks of daily living. Eating, dressing, getting in and out of bed, going to the bathroom--all would gradually, inexorably, become impossible. Facing that requires a bravery that I don’t have.

If I can stumble through the rest of my days in about the shape I’m in now, that will be just fine with me. That I can expect the benefits to last at least five years is encouraging. I plan to be around for longer than that, but it’s a pretty good start.