Help available for those who suffer

July 26, 2007
Make no mistake. Amyotrophic lateral sclerosis (ALS) is a serious, devastating and fatal disease.

However, life for ALS patients in the north suburban Chicago area is made easier by nonprofit organizations dedicated to helping patients and their families through the course of the disease.


"Being diagnosed with ALS no longer means you need to go home and get your affairs in order," said Annie Kennedy, director of the ALS division of the Muscular Dystrophy Association. "It means you need to make some accommodations and treat this aggressively, but there are people living very full lives after they've been diagnosed."

Both the Muscular Dystrophy Association and the local Les Turner ALS Foundation provide medical, psychological and practical help for patients, no matter their income.

"There is a great need for support among the ALS community," said Claire Owen, director of patient services for the Les Turner ALS foundation in Skokie.

Local patient care coordinators, like Melissa Panozzo of the Muscular Dystrophy Association, help patients connect with medical treatment, equipment and services when they need it. Living with ALS is hard enough without the complications of navigating the insurance and bureaucratic maze, said Grayslake patient Aimee Chamernik. She's glad Pannozzo will be there to help her meet future challenges as her disease progresses.

"When the time comes that we need caregiving assistance, it would be so overwhelming to deal with the system," Chamernik said. "The idea that we can just pick up the phone and call Melissa is fabulous."

Support groups and social workers help families deal with all of the emotional challenges of ALS. The disease takes a heavy toll on family members who must become caregivers, husbands or wives who suddenly find themselves taking on all of the household tasks and on the patients themselves who see their bodies and voices degenerate while their minds remain intact.

"Many people describe ALS as being trapped in a glass elevator," Kennedy said. "Eventually you're not able to express yourself and move your arms, but the whole world is talking to you."

Patients must also face end-of-life decisions. They can choose to go on a ventilator to prolong their lives once they lose the capacity to breathe, but that raises a host of other care and quality of life issues.

Owen said one goal of ALS treatment is to help patients maximize their energy through diet and weight maintenance, as well as giving them tools to help them perform simple tasks like dressing themselves and opening doors.

"We want to keep them as functional as possible," she said.

For more information about ALS, research and support, contact the following organizations:

* Les Turner ALS Foundation, Skokie (847) 679-3311; www.lesturnerals.org

* Muscular Dystrophy Association-ALS Division; (800) FIGHT-MD (344-4863); www.als-mda.org

* ALS Association; (818) 880-9007; www.alsa.org

--Stephanie Fosnight
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