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Edmonds City Council member Peggy Olson puts public face on Lou Gehrig's disease

The Edmonds councilwoman is battling Lou Gehrig's disease and fighting for awareness.

By Chris Fyall
For The Herald

EDMONDS -- Hers is a merciless disease.

It is often rapid, it is always brutal, and people who suffer from the incurable neurological disorder amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig's disease, watch themselves wither away.

Peggy Pritchard Olson knows this.

With ALS, the mind is unaffected, but muscles deteriorate, causing people to lose the ability to walk and leaving them struggling to speak and fighting to swallow.

Peggy Olson knows this, too.

Everyday life is much harder than it was in April when doctors first diagnosed the illness and told her she had about a year to live.

Too often now, she loses the ability to accomplish another task. Leaving the house used to take 15 minutes, then 30, now maybe an hour.

Everything becomes a challenge.

"Every day," husband Norm Olson said, "I end up doing more for her that she cannot do for herself. That's just the bottom line."

And, to the surprise of nobody, Peggy Olson -- an Edmonds City Council member -- is tackling it with a frank honesty that rebuffs the devastation ALS tries to inflict.

"It is lousy to have this disease," she said. "But I feel strongly that if I have to have it, then some good has to come out of it.

"If that means helping to raise awareness, then that's what I want to do."

Certainly, that is what Peggy Olson has done.

She's headed Team Peggy, a group of 80 friends that has catapulted ALS into the news and to the front of local consciousness.

The attention is badly needed, experts say.

ALS is not rare. Its incidence is on par with more widely recognized diseases like multiple sclerosis.

But ALS is so little understood that until weeks ago, it was technically impossible to die from it in the United States.

Doctors have drawn the cause of death from symptoms like suffocation, instead of the disease itself.

In September, Congress passed a patient registry bill that mandates the collection of ALS information. President Bush signed it into law on Oct. 8.

It took years of lobbying for the law to pass.

Most ALS patients die within two to five years, which makes it difficult to put a face on the disease, experts say.

Lacking a registry, ALS experts don't know how many people have had the disease. And without concrete information, research dollars are hard to come by, said Rebecca Moore, the executive director of the ALS Association's Evergreen Chapter.

The association estimates there are 500 ALS patients in Washington, but that estimate is based off a 1985 study, and Moore openly questions the figure.

"You don't usually have a bunch of people to knock on doors and make themselves heard," Moore said. "So to have Peggy, and her family and friends, come around and raise so much awareness is fabulous."

Already, local awareness has translated into action.

Team Peggy helped launch an ALS-specific support group at Stevens Hospital, the only such group between Bellevue and Bellingham. The first meeting was Monday.

Last week, the group hosted a movie night benefiting the ALS Association that drew about 200 people to the Edmonds Center for the Arts.

Olson was there, riding around in her new motorized scooter and putting a public face on her disease.

As a still-active politician who has regular meetings around the Puget Sound region, living with the disease is a struggle for Olson.

Friends and family shuttle her around, helping her meet the demands of a crowded schedule.

People who know Olson know she's as aware as ever, and they talk to her just as they used to. People who don't know her address her as though she is "stupid or retarded," she said.

One part of her life is about to get easier: speaking. It can be difficult to understand her now, especially if she gets emotional -- "My voice just shuts down," she said.

But soon she is getting a new DynaVox voice synthesizer, which she can load with 1,249 phrases. The physicist Stephen Hawking has a machine made by the same company, said Mary Rebar, a patient-care coordinator the with ALS Association's Evergreen Chapter.

The DynaVox will allow Olson to be more vocal at meetings.

It is like Olson to meet her challenges with humility and humor, said Bea O'Rourke, a close friend and Team Peggy member.

O'Rourke is helping coordinate Team Peggy's next task: Helping Peggy Olson herself.

Already the group is providing what little help the Olsons have asked for, or permitted -- some gardening, some meals before council meetings, some vacuuming, some car rides.

"Our help is kind of minimal right now," she said. "We're in a holding pattern, and I hope it stays there for a long time."

But ALS marches on, and Olson knows it.

Still, she thinks she's lucky.

"Some people get hit by a bus, and they never know how people feel about them," Olson said. "This disease is a pain. But I have certainly learned that people care."



Reporter Chris Fyall: 425-673-6525 or cfyall@heraldnet.com. http://heraldnet.com:80/article/2008...WS01/710269885