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Longtime Expert on A.L.S. Now Knows It All Too Well

New York Times

Tuesday 22 February 2005, 9:30 am
Keywords: News Articles , Health Topics

By John Schwartz

AN FRANCISCO - Dr. Richard K. Olney steers his motorized wheelchair toward the front door of the A.L.S. Center at the University of California, San Francisco.

Like other patients who visit the center, he has amyotrophic lateral sclerosis, a disease that destroys the nerves that control movement, trapping the victim in an increasingly inert body. It is inevitably fatal, often within a year or two.

Dr. Olney knows these bleak facts better than most because his name is on the door of the center, which he founded in 1993. As a neurologist and A.L.S. researcher, he has written more than 50 scientific papers. As a patient, he is now taking part in a clinical trial that he designed.

He is spending some of the time left to him speaking about his illness, in hopes of raising awareness about the disease, which has no cure, and money for research and treatment.

The causes of A.L.S. are still largely unknown; about 10 percent of cases appear to be linked to genetic flaws, while the other 90 percent are a persistent mystery.

People with A.L.S. remain mentally sharp. And, Dr. Olney said, in the early 1990's, "advances in molecular biology suggested that A.L.S. might become very treatable during my career."

While his once-crisp speech has become labored and indistinct, he is capable of a slow, tentative smile. And he does smile, often.

In fact, Dr. Olney explained, A.L.S. is not as uncommon as people think. The lifetime chance of getting what is commonly known as Lou Gehrig's disease is actually 1 in 1,000, or about the same as getting multiple sclerosis.

The difference is that A.L.S. kills so quickly that the number of living patients at any one time is relatively small - which also means that there is not a large population of victims to agitate for research and relief.

http://www.nytimes.com/2005/02/22/health/22als.html?pagewanted=2&th