Walk to Defeat ALS is Saturday at Riverstone - Coeur d'Alene Press: Local News

Walk to Defeat ALS is Saturday at Riverstone

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Posted: Thursday, September 13, 2012 12:00 am

COEUR d'ALENE - When Cindy Moore was diagnosed in 2010 with ALS, she didn't know much about the condition. She had heard of Lou Gehrig's Disease, the other name ALS goes by, but all she knew was that the baseball player had died from it.

"I was blind-sided by it. I had to learn about it, and when you learn what it really is, it's devastating," said Moore, a longtime employee of Coeur d'Alene-based Hecla Mining.

Amyotrophic lateral sclerosis affects nerve function and leads to gradual loss of muscle control. The mind and senses still work, but the body doesn't. The average life expectancy for a person diagnosed with ALS is two to five years. There is no known cure.

Money raised by this weekend's Walk to Defeat ALS, taking place at Riverstone Park, off Seltice Way in Coeur d'Alene, will help fund research and support for services provided by the ALS Association, a nonprofit dedicated to fighting the deadly disease.

Registration begins at 9 a.m. and the 2.5-mile walk begins at 10.

The majority of the funds raised locally will stay in the region, and will be used to help patients access home health care, expensive medical equipment and to provide educational services.

Jennifer Hanson, development director for the ALS Association's Evergreen Chapter that serves the North Idaho region, said the average cost of medical equipment alone for an ALS patient - hospital beds, motorized wheelchairs and other assistive devices - is roughly $200,000.

Paying for much-needed caregiver services, generally not covered by insurance, also creates an economic hardship.

"It can bankrupt people. It can take your life savings caring for someone who's going to live for two to five years," Moore said.

Moore will be at the walk Saturday, but she'll likely be in a wheelchair because she can no longer walk for long distances.

Co-workers at the company she works for, Hecla Mining - and the company itself - have been big supporters of the walk since it started taking place annually a few years ago in Coeur d'Alene.

According to the ALS Walk website, web.alsa.org/cda, by Wednesday afternoon, the Hecla team has already raised $19,333.

Another service provided by the ALS Assocation's local chapter is a support group that meets every month's second Tuesday from 5:30-7 p.m. at Hospice of North Idaho, 9493 N. Government Way, Hayden.

The gathering of ALS patients, family members and other loved ones of those afflicted with the disease, provides a place for the newly diagnosed to receive information and realize they are not alone.

Peggy Capes, of Rathdrum, attended her first support group meeting this week.

A hospice volunteer and social worker, Capes knew of ALS. A month ago, with her brother's diagnosis, it became personal.

"The hardest thing for me is the uncertainty," Capes said.

At Tuesday's meeting, she was able to listen to Moore, and other patients like Annie Dorris, talk about how it ALS is affecting their lives, and how they find ways to keep living with it.

Dorris, who relies on a motorized scooter for transportation, said it's difficult because patients' watch themselves decline as simple tasks become impossible.

"I used to take the stairs two at a time, now I look at a stair and I feel sick," Dorris said.

But since she's going through it, Dorris is able to share some of the tips and tricks that make life a little easier, like wearing fleece-lined "Ugg" boots to bed because she can't move her feet.

Moore said she used to think support groups were for other people, but now she can't imagine going through her ALS journey without the support group.

"It takes much more than just a family to support someone with ALS," Moore said.

Roughly 5,600 people are diagnosed with ALS each year in the United States, and an estimated 30,000 people are living with it nationally at any one time.

The average age of diagnosis is about 55, with ALS generally affecting people between age 40 and 60.

Information: (866) 786-7257 or www.alsa-ec.org

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1 comment:

  • DeNiles posted at 7:21 am on Thu, Sep 13, 2012.

    DeNiles Posts: 2450

    ALS is a catastrophic motor neuron disease which, as yet, has no cure. As the disease progresses into greater degrees of paralysis all medicine can offer is supportive care. And that care is expensive and not simple. Having experienced providing such care here in Idaho and elsewhere my advice for those newly diagnosed with ALS is to move elsewhere.

    The support systems and the funding motivation needed to take good care those with ALS is not available and does not exist in Idaho. Instead of care intent on keeping the patient kept as independent as possible the marginal support they will receive will keep them very limited. It takes a lot of money and skilled workers to keep those with advanced ALS actively involved with quality living. Like Stephen Hawkings all ALS sufferers can be quite integrated into daily life. But that does not happen around here. Whether they know what to do - or not, it just does not happen and that perspective goes all the way to Boise and Idaho's state health care administration.

    This is evident even in this article. The local ALS support group meets at Hospice business. ALS is not a death sentence, or it shouldn't be.

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