Strength in numbers
Posted: Monday, Apr 14, 2008 - By MAUREEN DOLAN
Staff writer
SHAWN GUST/Press



Debbie Copstead uses an augmentative communication device to introduce herself at a amyotrophic lateral sclerosis (ALS) support group meeting Tuesday in Coeur d'Alene. ALS, also referred to as "Lou Gehrig's disease", affects nerve cells in the brain and spinal cord resulting in loss of voluntary muscle control often affecting speech.

Support group allows members to share their experiences with ALS

COEUR d'ALENE -- They will not go quietly and their loved ones won't let them.

"We call them PALS, people with ALS," Chris Copstead said.

The Coeur d'Alene resident and former City Council member's wife Debbie became a person with amyotrophic lateral sclerosis, or ALS, in July 2006.

The couple joins other ALS patients, caregivers and some who have lost loved ones to the disease once a month for a support group meeting in Coeur d'Alene sponsored by the ALS Association's Evergreen Chapter that serves Idaho, Montana and Washington.

The group discusses what can be done to fight the devastating illness through research, public education and advocacy.

Members of the group share tips and talk about living with ALS, a degenerative disease affecting nerve cells in the brain and spinal cord leading to loss of control of the muscles throughout the body.

"Your mind is working 100 percent but your body's just shut down," Chris said.

According to the ALS Association, the affliction, best known as Lou Gehrig's disease, is not completely understood and there is no known cure.

Progressive paralysis usually spreads to the muscles of the trunk of the body and eventually affects speech, swallowing, chewing and breathing.

"You're given two to five years to live. Eighty percent of the patients die within five years," Chris said.

Members of the support group living with ALS show up in motorized wheelchairs or with high-tech speech-generating devices to aid them in communicating.

Debbie Copstead, 54, set up her electronic speaking device, resembling a laptop computer monitor, on the meeting table in front of her.

"They don't want her to speak anymore because of the strain it puts on her neck muscles," Chris said. "We've had a very difficult time because Debbie loves to talk."

A handful of people attended the April meeting including Jennifer Hanson, who lost her mother to the illness in 1992, and George Akers, whose wife died from it two years ago.

Akers' wife was diagnosed in October and died five months later.

When Hanson's mother was diagnosed at age 55, Hanson was living in Spokane and her mother in Montana.

"She started to slur her speech. At first they thought it might have been from medication or she might have been drinking," Hanson said. "I didn't know who to call."

Her mother died two years after diagnosis.

Hanson, who now works for the Evergreen Chapter of the ALS association, said the group provides resources for patients and their caregivers.

Sagle resident Steve Browning, who was diagnosed three years ago, is a member of the Evergreen Chapter board.

Browning and his family have traveled to Washington, D.C., to lobby for initiatives for ALS research.

Although the 43-year-old's speech has been affected slightly, he bears no other outward signs of the illness.

He is still able to work as a deputy clerk in the Bonner County tax assessor's office.

The big issue Browning has advocated for is the creation of an ALS registry at the national centers for disease control.

Without a registry there is no way to accurately identify ALS patients and collect data for research, Browning said.

He said it's important to have a government registry that is unbiased.

"Researchers are hesitant to use data collected by doctors or pharmaceutical companies," Browning said.

The need for an ALS registry was illustrated by the recent loss of a Coeur d'Alene support group member with the illness.

She died from pneumonia as a complication of the disease.

Chris Copstead said her death certificate will say pneumonia, not ALS, a practice that skews the data regarding the incidence and prevalence of the disease.

Another kind of initiative is more local.

Chris said the group is working with area emergency responders to enhance the 911 system so they can better serve ALS patients.

Basic rescue procedures using braces and boards can be deadly for an ALS patient, Chris said.

"If Debbie Copstead's name comes up on a 911 call, it will have a list of what can and can't be done," Chris said. "I'm excited because they want us to come in and help with training."



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