SEATTLE — 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.