Physician, Heal Thyself
Since that fateful day a decade ago, Parsons has waged a unique and heroic battle. A doctor of internal medicine, he devoted himself to looking for ways to treat and cure his disorder, a crippling neuromuscular condition called Lambert-Eaton Myasthenic Syndrome (LEMS), which afflicts only about 300 people in the world. Learning everything he could about LEMS—he taught himself the equivalent of a master's program in immunology—Parsons was out of his wheelchair within a month of his wife's ultimatum, at first using a walker and later a cane. Today, thanks to an experimental drug treatment he is helping pioneer, Parsons can walk on his own, drive a car and work several hours a day on his groundbreaking research. "Kevin's been using himself as a guinea pig," says Dr. Gerald Nepom, director of Seattle's Virginia Mason Research Center, one of the world's top autoimmune disease centers and the place where Parsons began his quest for a cure. "I've never known of someone doing research on his own disease, but he's doing serious, promising work."
Parsons's return from the brink—he saw his weight drop from 165 to 120 lbs. and grew so weak he nearly died from not being able to draw a breath—has also bolstered and inspired the 72 LEMS patients around the world with whom he keeps in close contact via phone and Internet. "He's our greatest champion," says Megan Drew, 32, a Seattle freelance artist who has had the syndrome since she was 19. "If it weren't for his advice, my condition would not be holding steady now. We're all hanging on his research." Parsons, who has just started a new phase of promising research at the physiology and biophysics department of the University of California, Irvine, doesn't plan on letting his fellow LEMS sufferers down. "I'm very optimistic," he says. "Not long ago there was nothing available. But I'd say within the decade we should have a cure."
A veritable one-man show when it comes to LEMS research, Parsons is slowly unraveling the mysteries of the disease that suddenly felled him in 1984. A geriatric specialist and internist at a Dallas medical center where Hillary worked as a supervising nurse (they met at a different hospital in 1979 and married two years later), Parsons came down with a severe case of the flu, which he believes may have triggered his LEMS. The disease, which causes the immune system to turn on itself, disrupts the signals between muscles and nerves and causes crippling, sometimes fatal weakness. During the next several years, Parsons grew more and more debilitated, suffering from asthma, vertigo, frequent nausea and drastic weight loss. Doctors were mystified.
In 1991 he collapsed at work and was rushed to UCLA's Medical Center. By measuring the effects on his muscles of small electrical shocks to the nerves, doctors finally diagnosed his LEMS, but they could do nothing to improve his deteriorating health. Once an avid skier and tennis player, Parsons could barely manage to climb stairs and was too tired to play catch with his 7-year-old son Jesse or take care of his daughter Sarah, 3. Deeply depressed, he found himself sapped of all strength and hope in that Costa Mesa mall. "I was never going to leave him, but he needed some motivation," says Hillary of her tough-love gambit. "He was spending all day in bed, mired in self-pity. But he loves to learn and investigate, so I challenged this mental part of him. And it worked just as I'd hoped."
Once Parsons made the decision to research treatments, he began calling the few institutions that were studying LEMS. Before long he read an intriguing paper from the 1980s about a promising drug called diaminopyridine, or DAP, which had been tried on 11 LEMS sufferers but was discontinued when some experienced seizures. Parsons acquired a batch of DAP and tried different dosages on himself until he hit a safe amount. "Once I got on that, I really turned the corner," he says. "Then I just kept improving."
Gradually Parsons has regained enough strength to work as many as five hours a day about three days a week. Within that window, he has worked miracles. Without the benefit of grant money, which goes to better known neurological disorders like Parkinson's disease that afflict far more people, Parsons persuaded doctors at the Virginia Mason Research Center, not far from his then home on Mercer Island, near Seattle, to let him use their equipment for his experiments. "When I first started researching, I was racing to find a cure," he explains. "Then I focused more on treatment and helping other people with LEMS." His research, he hopes, "may someday be applied to finding a cure for other autoimmune diseases."
In addition to publishing three well-received scientific papers on his research, Parsons has led dozens of LEMS sufferers to start taking DAP. Just as important, say those who have benefited from his research, is his generosity of spirit. "Kevin knows the medical and emotional side of our problems," says Julie Lathram, 53, a former grade-school teacher from Great Falls, Va., and a LEMS sufferer. "He knows what it's like when you can't talk, can't walk, can't even turn over in bed. How many doctors can say, 'Been there, done that'?"
Certainly few if any can say they first try every drug they recommend on themselves, as Parsons does. "If something works I'll pass the information on to other patients," he says. Parsons takes a DAP pill up to six times a day, along with regular doses of the steroid prednisone. "If I didn't take DAP in the morning I wouldn't be able to get up," says Parsons, who lies in bed for an hour waiting for the drug to kick in. "He's doing very well," says Dr. John Ravitz, Parsons's personal neurologist in Seattle. "But the DAP he is taking only treats the symptoms; it's not a cure. So that's what Kevin is working on."
He has all the motivation he needs in his two children. Parsons used to coach his son's softball team but stopped once LEMS struck. "Jesse had to learn to accept his father the way he is, and that was hard," says Hillary, who runs a Web-based antique-jewelry business to help supplement Kevin's disability insurance, the family's main source of income, and who has now returned to nursing. To daughter Sarah, now 13, "this is my normal condition," says Parsons. "I hope it won't always be this way."
Parsons is doing much more than hoping at his new lab, which is only a short drive from the brick-and-stone hillside home in Laguna Beach, Calif., that the Parsonses recently moved into. His enthusiasm for combating LEMS "has made our relationship stronger than ever," says Hillary, who counsels the families of LEMS patients. "We like and respect each other more. I just wish," she jokes, "that Kevin could carry his own luggage through airports."
Parsons, who hopes to finally win a grant to speed his research along, each day recovers a little more of the life he gave up on a decade ago. There is, for instance, his brand-new banjo. "I'm taking lessons," he says with glee. "I played guitar as a kid, but my fingers can't manage one now." Plucking away at the instrument, Parsons frowns for just an instant before smiling again. "The strings aren't quite right," he explains. "But, hey, it can be fixed. I'm an optimist."
Ron Arias on Mercer Island