Doctor Finds Contentment Seeking a Cure for His Own Disease

On good days, Dr. Kevin Parsons is a medical sleuth, seeking a cure for a rare and baffling disease. On bad days, he stays in bed, crippled by that same disease.

Every day, good or bad, starts with aching joints and exhausted muscles as Parsons awakens to a jangling alarm at 8 a.m. He lies still for five minutes, summoning the energy to slide his feet over and down to the floor so he can sit up.

Slumped against the bedpost, he reaches feebly for his first pill of the morning and counts himself lucky if he is strong enough to swallow it without having it catch, burning, in his throat.

Then Parsons, age 47, with all the vigor of a 90-year-old, falls back into bed and waits for the experimental drug to rev up his body. First comes an upset stomach and a tingling mouth, then the jitters. An hour passes and finally he is ready to begin his daily struggle between horizontal and vertical.

“OK,” he tells himself, “my mind is going to get me up and through this, whether my body likes it or not.”

Heaving himself upright, he walks stiff-legged to the shower--and one day out of six, that’s as far as he gets before heading back to bed, exhausted.

The other days, the good days, he waddles out to the kitchen, joins his wife for coffee and digs into his life’s work of researching the cause of his affliction--Lambert-Eaton syndrome, an autoimmune disease that causes debilitating weakness by blocking signals between nerves and muscles.

His dedication alone makes for an inspiring headline: Doctor contracts rare disease, becomes champion for fellow sufferers.

But there is more to this tired crusader’s story. Living with serious illness has taught Parsons things he never learned in medical school: Hope is a potent drug. So is an angry wife.

And, every day, this: To walk among the living, you must first get out of bed.

*

In 1986, Parsons knew as much about Lambert-Eaton syndrome as most doctors--next to nothing. Fresh out of a hospital residency, he worked in geriatrics at a medical center in Dallas. His wife, Hillary, was a nurse.

They had lofty ambitions. He wanted to become a department head in geriatrics; she wanted to be a chief of nursing.

Then they both caught a horrible flu. Hillary recovered after a month. But Kevin Parsons never felt quite normal again. And now he suspects that the illness knocked his immune system askew, setting the stage for more serious problems ahead.

Lambert-Eaton syndrome is triggered when the body makes antibodies that attach to a protein on the surface of nerve endings. The antibodies cause weakness by blocking the release of chemical neurotransmitters that tell the muscles to contract.

The disease is extremely rare, with only 300 or so known cases worldwide, and the typical patient is an old smoker with lung cancer. Doctors never considered the syndrome as a cause of Parsons’ problems, even as his health deteriorated over several years. He got skin infections and asthma. He developed vertigo and started vomiting.

The couple moved to Southern California, where Parsons found his medical work more and more exhausting. He scaled back his hours. He put a cot in his office and slept through lunch. Once a tennis player, skier and sailor, he felt too weak to walk up stairs. He was too tired to play ball with his 7-year-old son, Jesse, or help care for his 3-year-old daughter, Sarah.

After a series of infections sent him to the hospital, blood tests showed that he had almost no white cells, the kind that fight infections. He looked gaunt, like a cancer patient, and doctors thought that he might have leukemia. But a biopsy showed no leukemic cells, and other tests came up blank as well.

He stopped working completely, using up sick pay and then living off disability insurance.

By 1991, Parsons was rarely getting out of bed. He had slipped from 165 pounds to 130. His speech was slurred. Finally, in desperation, his wife drove him to the emergency room at UCLA Medical Center, stopping the car regularly to let him vomit out the window.

Over 28 days, Parsons was given dozens of tests. Specialists paraded through his room. They took out his spleen, which makes antibodies, but a muscle relaxant used in surgery paralyzed him and for days he couldn’t breathe without a ventilator. He developed pneumonia. Things looked grim.

In a morphine haze, Parsons gazed at his wife and whispered, “Kiss me goodbye. I’m dying.”

“No, you’re not,” she said angrily, her jaw set. “No. You are not. You’re not leaving me with two kids.”

His paralysis slowly lifted as the muscle relaxant wore off. Antibiotics knocked down his pneumonia. Within a couple of weeks, Parsons was well enough to leave the hospital.

And one of those countless tests, done more for teaching purposes than because it seemed warranted, yielded an explanation: Lambert-Eaton syndrome.

Parsons finally had a diagnosis, but no effective treatment, and he fell into a deep depression thinking about his future as an invalid. He went to bed and stayed there, getting up only to use the bathroom. He hardly talked. He wouldn’t eat.

Hillary Parsons quit her nursing job to care for him, but after two months, she got angry again. She took her husband to a busy shopping mall.

“I sat him there, locked the wheelchair and said, ‘Look around you. These people are living, and you’re dying. I’m sorry your body can’t do what it did before, but your mind remains the same, and it’s a great mind.’ ”

*

Then she delivered an ultimatum: If he didn’t snap out of it, she would put him in a nursing home or send him back to his mother.

“You wouldn’t,” he said.

“Oh, yes,” she said.

The next week, Parsons traded his wheelchair for a walker. The next month, he was walking with a cane.

He also started calling researchers and reading every medical study he could find about Lambert-Eaton syndrome. There weren’t many.

With so few patients, researchers and drug companies had little incentive to study the disease.

One study, done at the Mayo Clinic in Minnesota, seemed promising. Researchers had tried a drug called 3,4 diaminopyradine, or DAP, on 11 Lambert-Eaton patients. It seemed to help, but the study was halted after two patients had seizures.

Parsons called the researchers and found that one patient who had a seizure was an alcoholic and the other had a previous brain injury--factors that could have explained the seizures.

He asked if he could try DAP himself. Because he was a physician, the researchers approved, as long as a neurologist monitored his progress.

Parsons and his family moved to Seattle to be near Virginia Mason Medical Center and Dr. John Ravits, one of the few neurologists who knows much about Lambert-Eaton syndrome.

Ravits helped Parsons get started on DAP in 1993, and the effect has been astounding. DAP, which Parsons takes by pill six times a day, gives him more energy by restoring the flow of neurotransmitters for a few hours at a time.

It’s not a cure, but it gets him up most mornings and allows him something close to a normal life. Running and jumping are out of the question, and he walks slowly. But he doesn’t use a cane anymore.

His energy levels are too unpredictable for him to resume a medical practice. But now he has found another way to serve.

Starting two years ago, he taught himself the equivalent of a master’s degree in immunology and persuaded the Virginia Mason Research Center to lend him lab space to research a cure for Lambert-Eaton syndrome.

Now, three or four days a week, he drives from his suburban Mercer Island home to the center near downtown Seattle. Using blood samples sent by Lambert-Eaton patients from around the country, he’s pursuing two questions: What are the genetic traits of people predisposed to Lambert-Eaton? And where precisely do the antibodies attach themselves to neurons?

It’s a low-budget one-man research operation. He has had one research paper accepted by a medical journal. A second published paper will allow him to apply for grants and possibly hire a lab technician.

*

But he has already made a difference, consulting by phone and e-mail with about 50 Lambert-Eaton patients in the United States and abroad.

“If it weren’t for him, I’m sure I wouldn’t be here by now,” says Mildred Schiro, 67, of Rockford, Ill. Until Parsons helped her get on DAP in May 1998, she couldn’t bathe, eat or get out of bed by herself.

“Now I can cook. I can get up and walk, and I never thought I’d be out of a wheelchair,” Schiro says. “Dr. Parsons is a wonderful man. I sure wish he didn’t have to have this disease, but it’s been a blessing to all of us.”

Kevin and Hillary Parsons say it has brought them blessings too.

“This is not a sad story,” Hillary insists.

*

“I’ve got this disease,” Kevin says. “But I don’t think I’ve ever been happier with my life, my wife and myself.”

He says his personal struggles have made him more patient and attentive with patients. And he’s careful never to undermine someone’s hope, even when it appears that the end is near.

“Now I understand; you really are killing someone if you take away their hope,” he says.

He says his disease has turned an average marriage into a great one, stripping away distractions and uniting him and his wife in a common goal. They aren’t as wealthy as they would have been, but they’re comfortable on Parsons’ disability insurance and Social Security payments.

When they want to go on a trip, they go now, not later, knowing that time is precious. They spoil their children. They sit at the kitchen table and chat over coffee.

“We learned how to deal with each other,” Parsons says. “We’re best buddies.”

Parsons’ health deteriorates slightly each year, but he vows to keep working as long as he can get to the lab. If that becomes impossible, he’ll always have the phone and computer.

There are people who need him, he says. And that, more than any pill, gives him energy to keep rising out of bed, turning more bad days into good.

On the Net: A patient-run Lambert-Eaton syndrome site:

https://www.europa.com/~clarkc