In 1939, when Lou Gehrig had to say farewell to baseball at Yankee Stadium because of a mysterious neurological disease, he called it nothing more than "a bad break."
On Friday, Dr. Richard K. Olney and his family shared some pizza for lunch at home in Marin. Then he had to say farewell.
Another case of Lou Gehrig's disease. Another "bad break."
Dr. Olney, 64, founder of a UCSF clinic devoted to the study of Lou Gehrig's disease, also known as amyotrophic lateral sclerosis, or ALS, died later that day of the same disease that afflicted his patients.For a disease known for its terrible ironies, Dr. Olney's diagnosis with ALS eight years ago was one of the most heartbreaking. It was also a big setback in the struggle to advance treatment options.
A pioneer of ALS clinical research and teaching, Dr. Olney had forged worldwide collaborations and deep loyalties in the tight-knit ALS community of patients, families and caregivers."For ALS research, this is a disaster," Sean Scott, whose mother died of ALS after having been Dr. Olney's patient for three years, said shortly after Dr. Olney's diagnosis in 2004 became widely known.Scott would soon die, too. Both he and his mother had the same inherited form of ALS, now thought to be a collection of many diseases and subtypes, some genetic, some of unknown origin, none considered contagious, all invariably fatal within a few years at best.
Research didn't stop
Even as Dr. Olney fought his own battle with the disease, gradually losing nearly all his muscle function, he refused to give up his research into ALS. During the past few months, he and his son, Dr. Nicholas Olney, who is starting a UCLA residency in neurology later this year, labored together to complete the father's last clinical study.It was characteristic of him.
"Even though there was never technically a therapy for this disease, he would give you the impression we were still fighting, we had to keep fighting, and there was hope," Scott had said. "He was always a partner in the fight. Of course, he knew how it was going to end, but he was one of the only ALS doctors mentally open to the idea that it can be cured ... and he really believed he would be part of it."
Dr. Olney was well respected at UCSF long before his symptoms began to slow him down. The respect grew when his colleagues saw him putting the interests of his patients ahead of his own, even as he gradually lost the ability to walk, stand or speak.
He insisted on enrolling as the first patient in a clinical trial that he had designed before he became ill. The study was intended to find out whether drugs used for AIDS and cancer also might help ALS patients. He put himself through the placebo-controlled study to drive home the value of blinded, well-controlled studies, controversial among some patients because they bear the risk of being given fake pills when they may have only a few months left to live.
Dr. Olney, as a licensed physician, would have had no trouble obtaining whatever experimental treatment he suspected might have helped him. But he would have none of that, so he enrolled as any other patient.
Training the young
He authored more than 60 scholarly articles, and devoted much of his time and attention to the medical students and neurology fellows who rotated through the UCSF clinical program.
"Rick was really well known for training some outstanding young investigators," said Dr. Jeffrey Rothstein, director of an ALS research program at Johns Hopkins University. "It's not just whatever work he would have done that we're losing here. We're also losing a future generation, and that's a very big hit."
One of his medical trainees, Dr. Catherine Lomen-Hoerth, would become his physician in the end. She also took over Dr. Olney's widely respected ALS clinic at UCSF, which he founded in 1993. The two of them once co-authored an editorial in the journal Neurology, commenting on research suggesting that depression is surprisingly rare in late-stage ALS patients.
"This resiliency is inspiring for all working in the field of ALS and helps remind us daily of our own mortality and the importance of living each day fully," Dr. Olney and Lomen-Hoerth wrote.
During one of his last interviews, he tapped out a few words on a portable computer. "No depression in me," he said. "Once you accept your fate there isn't much to be depressed about."
Richard Koch Olney was born Dec. 15, 1947, in Munich. He attended the University of Oklahoma and Baylor College of Medicine.
Survivors include his wife, Paula Olney; a son, Dr. Nicholas Olney of Berkeley; a daughter, Amy Dobbs of Corte Madera; a brother, Frank Xavier Olney Jr. of Fort Lauderdale, Fla.; and a grandson.