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Lou Gehrig's disease sufferers can get help in Edmonds

Support groups for those with the disease and those who assist will meet in Edmonds.

By Chris Fyall
For The Herald

EDMONDS -- For people suffering from Lou Gehrig's disease, rapid muscle loss can make dealing with everyday tasks difficult.

Even eating can be a challenge.

The disease, known as amyotrophic lateral sclerosis, attacks muscles, making it hard for patients to hold simple items such as a fork, said Mary Rebar, with the ALS Association's Evergreen chapter.

Specialty items can help, such as large-barrel forks, which have extremely thick handles that are easier to grip, Rebar said. The forks are a simple way to restore a level of independence to patients.

For years, the ALS Association has offered support groups in Bellingham and Bellevue to share coping tips with ALS patients and their loved ones.

Now, the association is adding two support groups at Edmonds' Stevens Hospital, the first ever groups in Snohomish County. One group will be for patients, the other for caregivers.

The first meetings could happen as soon as September.

The association knows of 30 ALS patients in Snohomish County, including Edmonds City Councilwoman Peggy Pritchard Olson, who was diagnosed earlier this year.

A group of Olson's friends, calling themselves Team Peggy, helped initiate the Stevens Hospital ALS support groups.

The group is trying to raise funds and awareness to fight the disease and help Olson herself as the disease progresses.

"They are an amazing group of women," Olson said last week. "It is great that they are giving me support. But the fact that they are raising awareness of ALS and raising money is the main thing."

One of the group's next goals is to help create an ALS registry. Right now, when people die of the disease in Washington state, ALS is not listed as the cause of death. Instead, the state lists another cause -- such as suffocation -- caused by ALS.

That makes it difficult to track the disease for research purposes, said Pat Greenstreet, a close friend of Olson and a founding member of Team Peggy.

Still, Team Peggy is proud of securing the local support groups at Stevens Hospital, Greenstreet said.

Officials at Stevens Hospital were more than willing to sign on. The hospital's coordinator for support groups, Jack Kirkman, lost two close friends to ALS. One of the hospital commissioners, Fred Langer, had his best friend's mother die from complications of the disease, too.

"It is one of the worst diseases in the world you can have," Kirkman said. "The impact is just huge for the families and the people who have to go through it."



Reporter Chris Fyall: 425-673-6525 or cfyall@heraldnet.com.
http://www.heraldnet.com:80/article/...WS01/193044418