San Francisco Chronicle - August 8, 2005
Carl Hall, chall@sfchronicle.com.

His 24-year-old daughter, Amy, booked a rock band at the City Club in San Francisco, a benefit for the UCSF ALS Treatment and Research Center.

Her father founded and ran the center until he, too, was stricken last year with ALS, the fast-killing neuromuscular condition better known as Lou Gehrig's disease, or amyotrophic lateral sclerosis.

Now, Olney is a patient at his own center. His former student, Dr. Catherine Lomen-Hoerth, is his doctor.

He can't speak anymore except by using a computer and synthesized voice. Unable to work the controls on his motorized wheelchair as well as he once could, Olney keeps banging into door frames and ripping window screens trying to get around at home in Corte Madera.

Yet he still wants to shake a leg, despite the fight it takes just to keep breathing.

Olney makes it clear he is not about to let despair consume his last days. Instead, he is spending as much time as he can at work, still trying to make a case that unproven assumptions -- whether they concern medication choices or attitudes among the dying -- can be dangerous.

Typing at the rate of five words a minute, Olney co-wrote with Lomen- Hoerth an editorial for the July 12 issue of the journal Neurology, highlighting the significance of new studies suggesting that depression is surprisingly rare in late-stage ALS patients.

Researchers investigated the emotional state of 53 patients in their last six months or less of life. In monthly visits, only 8 percent were found to be consistently depressed, and there was no sign of increasing depression as the end neared.

"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," Olney and Lomen-Hoerth concluded.

In his living room last week, Olney sat in his wheelchair, shoulders drooping under the strain of holding his head up and moving his computer controller as he took questions. His answers were slow in forming, but clear enough.

"No depression in me," he said. "Once you accept your fate there isn't much to be depressed about."

His wife, Paula, sat beside him. His son, Nick, was close by. They spoke of the frustration that comes along with caring for someone who's losing all muscle control. They also laughed about a family visit to a karaoke club a few weeks ago. For his song, Olney chose a Bon Jovi number, whose lyrics extol the appeal of "going out in a blaze of glory."

Olney's own fame has spread far beyond ALS circles since his illness, in part because of his decision to enroll as the first patient in a placebo- controlled drug trial, which he had designed at the UCSF clinic. Results of the trial won't be known until next summer at the earliest -- possibly too late for Olney to find out about them.

The study selected patients at random to receive one of two test drugs, or a placebo. Many ALS patients shun placebo-controlled trials, arguing they would rather take their chances with potentially harmful uncontrolled drug experiments if they were at least guaranteed not to be wasting any time with sugar pills.

As it happened, Olney wound up in one of the patient groups given a bona fide drug candidate, in his case a protease inhibitor called ritonavir already used in HIV cases. The drug may have helped him to some degree, by stabilizing his breathing capacity.

"I have completed the randomized phase, so I now know what I received," he said, but insisted his own case proves nothing as to the efficacy of the AIDS drug for ALS cases.

"It's always hard to know with one person because the disease is so variable," he said. "That is the reason randomized trials are necessary."

Now, in fact, Paula Olney fears he is on another downturn, with more trouble swallowing, more weakness in his hands, less control of his head and neck.

A $4,000 communication device is now useless because Olney lost the strength to tap on the portable keyboard, which Paula planned to carry in her purse for outings.

The outings will continue just the same. Wednesday night, he intends to be out in his wheelchair, dancing with his wife.

___

If go you

The Rock ALS Benefit on Wednesday, 7-10:30 p.m., will raise money for the ALS Treatment and Research Center at UCSF. The $50 admission includes hors d'oeuvres, wine or other beverage and a concert by the band Stephen Kellogg and the Sixers. The City Club is at 155 Sansome St., 10th floor; register online at www.active.com/event_detail.cfm?event_id=1242019.

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