<< Previous   of   Next >> Enterprise/CHRIS GOODENOW  (click to enlarge) Edmonds City Councilmember Peggy Pritchard Olson is greeted by Rob Junglov, of Edmonds, who worked on Olson's first campaign for City Council, before an ALS benefit she co-hosted with Team Peggy, Monday, Oct. 20, at the Edmonds Center for the Arts. Enterprise/CHRIS GOODENOW  (click to enlarge) Attendees fill out the lobby before an ALS benefit hosted by Edmonds City Councilmember Peggy Pritchard Olson and Team Peggy, Monday, Oct. 20, at the Edmonds Center for the Arts.

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CONTACT THE ENTERPRISE Jocelyn Robinson, News editor jrobinson@heraldnet.com

Taking her pain public

• Councilwoman Peggy Pritchard Olson puts a face to ALS disease

By Chris Fyall
Enterprise editor

Hers is a merciless disease.

It is often rapid, it is always brutal, and when you have the incurable neurological disorder amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig's disease, you watch yourself wither away.

Peggy Pritchard Olson knows this.

With ALS, your mind is unaffected, but your muscles deteriorate, and you limp, and you struggle to speak and you can hardly swallow.

Peggy knows this, too.

Walking, speaking, eating -- it's all much harder than it was in April, when doctors first diagnosed her, and told her she had about a year to live.

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

Everything becomes a challenge.

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

But for Peggy -- an Edmonds City Council member who, at 58, is a wife, a grandmother to one, a stepmother to two, a sister to three, and a friend to untold hundreds -- those are the facts.

What is up to her is how she deals with it.

And, to the surprise of nobody, she's tackling it with abandon, with an undaunted ferocity and a frank honesty that rebuffs the devastation ALS tries to inflict.

"It is lousy to have this disease," she says. "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 has done.

She's headed Team Peggy, a group of 80 friends that has catapulted ALS into the pages of the Everett Herald and the Seattle Times, onto local television screens, 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, or MS.

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

As patients die from ALS complications, doctors in this country have drawn the cause of death from symptoms like suffocation, instead of the disease itself.

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

It took years of lobbying for the law to pass.

Part of ALS's difficulty is that most 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 have not known how many people have the disease.

Without concrete information, research dollars are hard to come by, says Rebecca Moore, the executive director of the ALS Association's Evergreen Chapter.

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

That means the problems of too-little attention are far from over.

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

Already, local awareness has translated into immediate action.

With Peggy as inspiration, Team Peggy helped launch an ALS-specific support group at Stevens Hospital, the only such group between Bellevue and Bellingham. The first meeting was Oct. 20.

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

As always, Peggy was there, riding around in her new, red motorized scooter, and putting a public face on her disease.

Private life
But ALS' pains are mostly private.

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

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

Fortunately, instead of visiting doctors everywhere, all of the time, she has one half-day appointment every three months where she meets with nine different doctors.

That helps.

Still, a year ago, multi-tasking was a way of life for a woman known for her independence; now it is an impossibility.

Writing is difficult, and smaller things are predictably hard. ALS has stripped Peggy's right hand of most of its muscle, so it can be frustrating to handle a utensil or turn on a table lamp.

She's falling more, too, and getting up now requires the help of her husband.

Life with ALS is tougher, Peggy says.

"The brain is the same. Your body just does not do anything anymore," she says.

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

It's a point that drives home the obvious truth: Nothing about ALS is easy.

Strangely, however, one part of Peggy's life is about to get easier: speaking. It can be difficult to understand Peggy now, especially if she gets emotional -- "My voice just shuts down," she says.

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 Peggy to be more vocal at meetings, "instead of sitting up there like a lump," as she says.

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

But O'Rourke and the people closest to Peggy understand that as her ALS progresses, things are likely to get worse.

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

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

Peggy's husband takes the disease day-by-day, he says, so it's not clear what the family might need next.

But Peggy's friends are ready, O'Rourke says.

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

So does everybody.

But ALS marches on, and Peggy knows it.

That's frightening.

But in some ways, if you look at it right, Peggy's lucky.

That's what she says.

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

Reporter Chris Fyall: 425-673-6525 or cfyall@heraldnet.com