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Living With Lou Gehrig's Disease

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The illness known as Lou Gehrig's disease first gained the attention of the public when the New York Yankee legend came down with it in the 1930s. The debilitating disease forced him to retire in 1939 and proved fatal just two years later. All this month the health community is focusing on educating the public about Lou Gehrig's disease - also known as Amyotrophic Lateral Sclerosis. Those who live with ALS are finding new ways to cope with the physical and mental complications. But despite new strides those who deal with the illness everyday obstacles remain, not just for patients but for caregivers as well. 90.3 WCPN's Tarice Sims reports.

Wednesday, May 15, 2002 at 1:26 pm

Tarice Sims: A few years ago Claudia Nichol of Bay Village noticed a change in her body. She says she didn't feel right when she stood up and as she walked, it felt as if she was making her way across a ship at sea. Nichol didn't worry too much about it until one day while reading the paper when her eyes fell on an article about a woman who had Amyotrophic Lateral Sclerosis, or ALS.

Claudia Nichol: I read the first paragraph and I stopped because I got this terrible feeling and I was afraid that was what I had.

TS: Just 3 years after reading that article, she got the news that she had ALS, also known as Lou Gehrig's disease. Dr. Eric Pioro is director of the ALS Center at the Cleveland Clinic. He says ALS is a degenerative disease.

Eric Pioro: It's a condition, unfortunately, is relentless and progressive degeneration, primarily of motor neurons - motor neurons are the cells in our brain and in our spinal chord that actually initiate and start movement.

TS: Pioro says there is no cure for Lou Gehrig's disease. The average life span of someone with ALS is 3 to 5 years. It takes away your abilities rather quickly. But Claudia says she's been lucky so far. Since her diagnosis in 1997, the 64-year-old has lost her the use of both her hands and she can no longer walk. But she can still speak which has proven to be valuable as she communicates with friends every morning through a voice activated e-mail system. Nichol says this helps her not to dwell on her limitations but it's still hard.

CN: Until you've lost your independence you have no idea how you feel when you can do nothing on your own. I am a shopper. I love to buy things for the kids and grandkids, now I can't. Well I can, but I can't just go out and do it.

TS: In order to do her shopping Nichol relies on her caregiver, her husband Larry. He says he was already retired when his wife was diagnosed so he was able to step right in a do whatever was needed for Claudia. He adds her needs have grown over the years.

Larry Nichol: I have to take on additional jobs as the disease progresses, and it's to the point now when Claudia cannot do many of the things herself and so I have to do it all. As far as keeping up the house, but also her personal care. Feeding her, changing her clothes - all the things that she can't do.

TS: Nichol says he takes advantage of the programs and assistance from the ALS Association of Northeast Ohio. Recently they expanded their caregivers program that supplies a nursing attendant to come in and sit with a Lou Gehrig's patient from up to 8 hours a month. This allows normal caregivers time to get out and take care of other needs. Judy Post is the Community Outreach Coordinator for the ALS association. She was also a caregiver for her husband who died of the disease a few years ago. Post says she discovered she needed the same type of assistance after some friends came to stay with her and her husband one weekend.

Judy Post: I realized that this had just been a wonderful two days and I was going to have to go back to the isolation we were experiencing. And, I said you know I've recognized that something is wrong here and I've got to find the name of a good therapist I've got to see a psychiatrist. And my friend said to me you don't need therapy you need to get out to the house.

TS: Post says the program is a good step forward but more has to be done to help those dealing with ALS. Mike Armstrong is Executive Director of the ALS association of Northeast Ohio. He says they try to fight for their fair share of funding and research dollars but it's difficult.

Mike Armstrong: ALS has the same occurrence as MS - the problem is people with ALS aren't around very long. If you have MS you can pretty much lead a full life. We have the same number of people being diagnosed with the disease but we have 25% of those people are passing away every year.

TS: Armstrong says they estimate a cost of $200,000 to care fro ALS patients in the home. In addition, the prescription medication available is very expensive. These are just a few of the issues they'll discuss. Tomorrow (5/16/02) the ALS association will gather in the nation's capital to encourage legislators to invest in research for ALS. In Cleveland, Tarice Sims, 90.3 WCPN News.