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-- [ From: Seymour Gross * EMC.Ver #2.5.3 ] -- The Philadelphia Inquirer, March 10, 1999 ------------------------------------------------------------------------ -------- A doctor's war against Parkinson's takes a more personal turn. A healer's brave last battle against an unblinking foe ------------------------------------------------------------------------ -------- Ask the experts ------------------------------------------------------------------------ -------- Dr. Leonard Jarett, ex-director of Penn's Pathology and Lab Medicine Department, aligns the more than 50 pills he takes every 24 hours to push back against Parkinson's disease. (Michael S. Wirtz/Inquirer Staff Photographer) By Shankar Vedantam INQUIRER STAFF WRITER His first patient had Parkinson's disease. Leonard Jarett was in medical school back then, in 1960. There was little treatment to offer. The patient drooled. He wet the bed and could not clean himself. He suffered from stiffness and tremors. He slurred. He died that way, helpless and in pain. The young medical student reacted personally. He felt sorry for the patient. Fiercely independent himself, Jarett recoiled at such helplessness. He swore to himself that he would never get such a disease . "Sure enough," he now says in his soft Texan twang, "here I am." Six years ago, the University of Pennsylvania physician was diagnosed with Parkinson's disease, a brain disorder that gets progressively worse and has no cure. Jarett, who directed Penn's Pathology and Lab Medicine Department for 18 years and has trained hundreds of scientists to fight disease, suddenly found himself at the receiving end of the stethoscope. Over the last year, he has deteriorated significantly. The medicines help, but have terrible side effects. They ease the tremors and stiffness, but often make him seem drunk: His head sways in great dipping arcs, and his arms wave like a conductor. At night, he arranges more than 50 multicolored pills on his nightstand. There are three medicines for the tremors, others for his depression, his stomach, his throat. There are medicines to limit the side effects of other medicines. With trembling hands, he organizes them into little groups. Otherwise, he may not be able to pick out the pills he needs, or he may overdose himself. He has to wake up at 2 a.m. to take pills so that his muscles won't be stiff at dawn. And with all that, the medicines are increasingly like sandbags piled against an advancing sea. When they fail, Jarett's legs feel like blocks of concrete. If he lies on his side, the weight of one leg on the other is like a ton of bricks. If he tries to move the leg, it will sometimes freeze and hang in the air. Then he has to ask his wife, Arlene, to roll him over. The slightest pressure hurts. If a pajama leg rides up and twists around his knee, it feels like a vise that will tear his leg off. A bedsheet feels like lead. Pins and needles torment his feet. His muscles involuntarily twist his toes so sharply downward that they send cramps shooting through his feet. In the worst moments, it's hard for Jarett, 62, to even tell his wife what is wrong. His thinking slows, his speech becomes labored. The man who prided himself on his mental sharpness and his athleticism now finds his mind and body slipping out of control. The doctor who once had patients and colleagues hanging on his every word now finds people stealing glances at him out of the corners of their eyes. "It's the most utter helplessness you can imagine," he says. "It's frustration beyond belief." Parkinson's disease results from a shortage of the neurotransmitter dopamine in the brain. For reasons that scientists don't know, the cells that produce dopamine die, affecting parts of the brain that control muscles. At least half a million Americans have the disease, with some estimates running as high as three million. Most are older than 60, although it can strike younger people, such as actor Michael J. Fox, 37, who was diagnosed in 1991. The disease primarily affects muscle movements. Medicines can help replace the dopamine, but cause severe side effects. "The problem he's having is what plagues many people as the disease gets worse," said Jarett's doctor, Howard Hurtig, Pennsylvania Hospital's neurology chief and top Parkinson's doctor. "It fluctuates between good times and bad times. You can't plan your day because you don't know when you are going to turn off." Jarett's first signs seemed to have nothing to do with Parkinson's: He developed terrible spells of sadness. "Those of us who knew him thought it was depression," Hurtig said. "Turns out it was depression and Parkinson's. It's a very common early symptom." In 1989, Jarett, successful and admired, was invited to lecture in Singapore. On the way back, Jarett broke down in tears. "I'm worthless," he told Arlene. "I'm going to be fired." He cried all the way home. He saw a psychiatrist, who prescribed antidepression medicines. They helped. But strange things kept happening. In 1990, Jarett had a gall-bladder operation. When he came out of anesthesia, his body went rigid. The nurses couldn't straighten him. The anesthesiologist had never seen anything like it. When he played tennis, Jarett couldn't seem to move his racket in time to hit the ball. One day after a meeting, a colleague took Jarett aside and advised him to see a neurologist. "You have been in the meeting for an hour," the colleague said. "You never blinked, you never changed expression." Jarett had also noticed a tremor in one finger. He saw a neurologist, who said the symptoms were unclear. But the crying spells continued. He saw a psychoanalyst, who said Jarett had suffered a traumatic childhood experience. Jarett racked his brains over many sessions. "I had a happy childhood," he told the analyst. Another psychiatrist advised him to stop all medicines so they could evaluate him afresh. Two days later, Jarett was laid out flat, unable to move a muscle. The depression medicines were masking the effects of Jarett's real disease. This time a neurologist diagnosed Parkinson's. Now Jarett wants to try an experimental treatment called deep brain stimulation. Scientists are investigating the effect of planting electrodes deep in the brain as a way to stop the erratic body movements . Surgery is not something Jarett would have considered a year ago. But now, he is spurred by one haunting fear: "If you look to the future, and it's like that guy I took care of. . . . " Jarett has soft, kindly features. His face is all smooth curves. His eyes gleam. His Southern accent adds to an appearance of mildness. But the image hides the real Jarett, a ferocious competitor. In the intricately politicized world of academia, he has won many turf wars. As a recruiter, he has an eye for people with ambition. Even playing his beloved tennis, Jarett hated to lose. Now, confronted by disease, he reacts the only way he knows how: He still runs his diabetes research lab at Penn. When he is overcome by his body's involuntary movements, he is angry. When he dissolves into tears, he punches his fists into his knees. He grinds a heel into the ground to make himself stop crying, lifts his leg , and stamps it down again. "Why don't you face it like a man?" a cousin asked him during a crying spell. It infuriated Jarett. As a doctor and as a patient, he knows that mental illnesses can't be cured through willpower. Becoming a patient has given the doctor an insight into suffering that no medical school can teach. One evening, when Jarett was meeting acquaintances for dinner, his head was rolling around a lot. One woman in his group nearly passed out in fright. Others, he said, stared at him with "What the hell was I doing here?" expressions. Jarett was so angry that he pushed his chair back and stomped out of the club. Arlene followed him. Outside, they cried together. When the rolling movements eased, they went back in. The band was playing the jitterbug. Jarett was still fuming. He wanted to prove a point. So he grabbed Arlene's hand and stormed onto the dance floor, where he proceeded to show off their dancing skills. "It was a challenge," he says. "If you can do better, come out and try." No one did. One recent evening, Jarett arrived at his Rosemont home with his head bobbing and his shoulders swaying. "You didn't kill anybody?" his wife asked. "No, Arlene," he replied evenly. "There were a few I took a shot at." The couple, married 36 years, have always squabbled. Neither sees Jarett's ailment as reason to stop. Alone, they sing each other's praises, but the moment they are together they argue about which pills he should take, whether he should be driving, and just about everything else. "Not the kind of couple they make Hallmark movies about," she said. As the evening progressed, Jarett's condition deteriorated. Arlene watched stoically. They have dealt with chronic illness before -- their 31-year-old son, Douglas, has Down syndrome. Both are keenly sensitive to what the other is going through. As Jarett's speech slowed, he struggled to keep up with the conversation and to keep his body still. Mostly, he failed. But he kept trying, afraid that if he were passive, he would become like that Parkinson's patient he treated long ago. "I won't give up," he vowed. "I won't die salivating down my cheeks." Philadelphia Online Dr. Howard Hurtig and other Parkinson's experts at Pennsylvania Hospital will answer your Parkinson's questions online. Go to Philadelphia Online , The Inquirer's site on the Internet: http://health.phillynews.com/ © 1998 Philadelphia Newspapers Inc.