Video: Lou Gehrig's disease strikes doctor

By Roger O’Neil Correspondent
NBC News
updated 5/13/2005 8:49:19 PM ET 2005-05-14T00:49:19

It's a path no one wants to be on, but Dr. Richard Olney is determined to make a difference on his path before it ends. Making a difference has been his life's work as a teacher and researcher, but mostly a gentle counselor to those stricken with one of the most devastating diseases — ALS, or amyotrophic lateral sclerosis.

There's a one in 1,000 chance of getting ALS, also known as Lou Gehrig's disease. Call it cruel irony, but it's Olney who has the disease now.

Even doctors chase rainbows when they are sick. At first Olney thought his coordination problems stemmed from back troubles.

After back surgery, he did a common test on himself for ALS: He counted how many times could he tap his fingers in 10 seconds? That’s when he knew for sure the rainbow was a mirage.

In 10 short months, the neurological disease has ravaged his body, but not his sense of humor. He calls his situation “just bad luck.”

His wife, Paula, helps him communicate now.

What does Olney hope to be remembered for as a doctor?

“Someone who helped contribute to a better understanding of ALS,” he says.

Even in his last months, he's doing that by taking part in a drug study he designed before getting sick. It includes placebos, or sugar pills. He could easily get the real medicines being tested, but has refused. That commitment is what inspired one of his students, who has taken over the clinic he founded.

“He's still present in a sense, giving me advice and helping us taking care of these patients,” says Dr. Catherine Lomen-Hoerth, director of the ALS Center at the University of California, San Francisco.

Olney's two grown children have come home to take care of dad. 

ALS is usually a disease of private suffering, but with a computer Olney is telling his story to raise awareness and money for research.

The bittersweet irony of this disease and this doctor haunts his wife of 30 years. “He's famous for dying from a disease rather than finding a cure for it,” says Paula Olney.

Before the ALS would steal his speech, the doctor made sure his wife would always know how he felt, programming the computer to say, “I love you, Paula.”

It’s the legacy of a good doctor, who is still making a difference.

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