A medical doctor, Olney was a researcher doing clinical research on amyotrophic lateral sclerosis — “Lou Gehrig’s disease” — and the director of the ALS Treatment and Research Center at the University of California in San Francisco. In 2003, a problem in his leg led to back surgery — but it didn’t help. Then he had problem with an arm, so he tested himself for ALS, and immediately, he said, “I knew I had ALS.” He knew the grim statistics: most people with the disease live for about two years, dying after progressively losing the ability to move. But Olney had a mission: to ensure the ALS Treatment and Research Center survived him. Normally private, he gave interviews to journalists to get publicity for the Center, and created an endowment to help fund it. And his symptoms grew progressively worse. “Once he accepted his diagnosis, he had this attitude that he could make the most of each day,” says Olney’s son, Nicholas, a neurologist. “He didn’t let the next muscle group, the next ability he lost, get him down.” Toward the end, he could communicate only by moving his eyes; a computer would output the words he wanted to say. Even breathing was a struggle, yet he participated in research — now, as a subject — at the Center until a week before his death. Dr. Olney died at home from the disease on January 27, eight years after his diagnosis. He was 63.
From This is True for 5 February 2012