For people suffering from Amyotrophic lateral sclerosis (ALS), or Lou Gehrig’s Disease, rapid muscle loss can make dealing with every day objects — combs, buttons — difficult.
Even eating can be a challenge.
The disease attacks muscles, making it difficult for patients to hold even simple items like a fork, said Mary Rebar, with the ALS Association’s Evergreen chapter.
Enter specialty items like 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 craving it.
For years, the ALS Association has hosted support groups in Bellingham and Bellevue to share coping tips, like the large-barrel forks, with both 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.
“As the disease moves forward, things need to be changed and modified,” said Rebar, who is the organization’s North Sound patient care coordinator.
The Association knows of 30 ALS patients in Snohomish County, including Edmonds City Councilmember 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 group.
The group is trying to raise awareness of ALS locally, raise funds to fight the little-understood disease and help Olson herself as the disease progresses.
“They are an amazing group of women,” Olson said on Aug. 5. “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.”
Red-shirted Team Peggy members have set up a booth at the Summer Market, the Third Thursday ArtWalks, and will have a booth at the Taste of Edmonds.
One of the group’s next goals is to help create an ALS registry. Right now, when people die of ALS in Washington state, ALS is not listed as the cause of death. Instead, the state lists another cause – like suffocation – caused by ALS.
That makes it difficult to track the disease for research purposes, said Pat Greenstreet, a close friend of Olson’s and a founding member of Team Peggy.
But, the group is very 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, has had two close friends die from ALS. One of the hospital commissioners, Fred Langer, had his best friend’s mother died from 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.”
Team Peggy people know that, too. For instance, Greenstreet’s mother died in 1989 after contracting ALS.
She’s using that experience to help find resources now.
“I am so delighted to be able to use what I learned with that horrible experience with my mom to make it easier for others,” Greenstreet said. “It was a stiff tuition to pay, but hopefully it is paying off for other patients.”
Reporter Chris Fyall: 425-673-6525 or cfyall@heraldnet.com
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