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A Son's New Hope : News helps writer begin to come to terms with his father's death from the disease.

March 19, 1993|MICHAEL ARKUSH | TIMES STAFF WRITER

My father used to play catch with me all the time. Then, one day, he couldn't raise his hands above his head.

That's when I found out that there was something wrong with him. It turned out to be ALS--amyotrophic lateral sclerosis--or Lou Gehrig's disease. A year later, he was dead. He was 51. I was only 12.

I thought about my father when the news came out two weeks ago that researchers had isolated the defective gene that causes some cases of the disease.

For years, I chose to remain ignorant about ALS. When I saw newspaper stories about ALS, I'd look away. I was scared that I would get the disease. I'm sure my reaction wasn't too different from that of the children of parents who had Alzheimer's or schizophrenia, or any other disease that might pass from generation to generation.

The past was too painful. In the latter stages of the disease, my dad was confined to a wheelchair. Sometimes I took him to the bathroom and helped undress him. There was nothing my mother, brother, sister or I could do but watch him slowly deteriorate into a cripple. I remember dreaming each night that he would get better, but every day, he looked worse. His death was a relief.

But last week's news has unexpectedly changed things. Now I want to get more information, and the reason is simple: There is finally hope. Maybe I'm setting myself up for even more disappointment, but I now believe that they will find a cure, and I want to join in that celebration. I'm sure many other relatives of ALS victims feel the same way.

I'm told I could be tested for the defective gene, but I'm not willing to go that far. I'm afraid to know whether I'm at risk of contracting ALS, even though experts say a test would not confirm or rule out anything.

For now, I'm satisfied that the gene discovery has helped me begin to come to terms with my father's death. I can remember the good times before the illness with a little less pain, and I can feel joy for all the people who might now be spared the same agony my family and I faced.

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