As a boy, Steven Peterson of Seattle didn't worry too much about the affliction that landed his grandmother in a nursing home. Everyone's grandparents were frail. But when Peterson was only 17, his father, then 45, was diagnosed with the same disorder--a rare genetic disease called spinocerebellar ataxia. As Peterson learned all too well over the next two decades, the disease gradually destroys an area of the brain called the cerebellum, taking muscle control with it. It starts gently with double vision, as the eye muscles weaken. Later, arms and legs fail. By the end, even the muscles that coordinate swallowing go, so that patients have to be fed with a stomach tube. The mind, however, remains untouched.
By the time Peterson reached his early 30s, he began to suspect that he, too, carried the bad gene. "I'd have a couple drinks and my vision would go wacky," he says. "I'd get up in the middle of the night and my equilibrium would be off." Friends assured him that these things happened to them, too. Even his doctor doubted he had the disease. One friend told him it was all just "a function of being 30 rather than 20." Peterson didn't believe it.
In 1995, just after the birth of his third daughter, he learned that a genetic test had been developed for the disease. He immediately signed up--after making sure that his insurance could not be yanked if he was diagnosed. The fact that there was no cure for the illness did not sway him.
When the results came back, a genetic counselor was on hand to help him deal with the bad news. Peterson didn't need the help. Instead of sinking into despair, he began making financial arrangements for his wife and daughters, securing his family real-estate business and indulging himself in a few unaccustomed treats--like a new Harley Davidson. With a vigorous workout program and improved diet, Peterson, now 39, is hoping to forestall some of the infirmity and keep working until he's 55. "Knowing I have this has enabled me to take control of my life," he says.
Still, he doesn't want his children to even contemplate testing "until they're adults and have their insurance secure," he says. And it's maybe even possible that by that time, scientists will have found a cure.