A terrible disease—ALS
The recent death of scientist Steven Hawking has focused attention on the disease that crippled him and ultimately claimed his life, but the most noteworthy thing about his battle with Amyotrophic Lateral Sclerosis (ALS) was his long survival with it. He was diagnosed with it in 1963 and lived until March of this year—55 years. But, rare as this disease is, he was not the only one who suffered or suffers from it.
My father, Elmer Domke, died much too young. He was 56 years old and was beginning to think about retirement when he noticed he was having trouble with his hands. He was losing control of them and also losing strength.
He was a retail jeweler and watchmaker, and losing manual dexterity meant he couldn’t continue doing what he did best—repairing those tiny mechanisms that tell us what time it is. I suppose he thought it would go away, but it got worse. So he went to the family doctor and was told he needed to be tested.
What the tests revealed was really bad news. He had the incurable disease—ALS. Since this was the disease that claimed the life of famed baseball player Lou Gehrig, many people call it Lou Gehrig’s Disease. But to me it will always be Elmer Domke’s Disease. And, I guess that would be the case for anyone who has lost a relative or friend to this crippling disease.
One of the first things I asked when I learned about ALS was, is it hereditary? Could I get it? The answers were no and yes. It isn’t hereditary in most cases—only about 1 percent can inherit it from a parent. Doctors don’t really know what causes it.
The best news so far is that certain treatments can slow it down, but it remains incurable and most people who get it only survive a few years. My dad didn’t get two years from the time he was diagnosed. I was in military service stationed overseas, and by the time I was able to be there to see him he was already completely paralyzed. He couldn’t talk and he couldn’t feed himself. Seeing him that way was one of the hardest things I have ever experienced.
I always knew I would probably outlive my parents, but I just never expected my dad to die so young. I was angry for a while. Eventually I got over my anger, but I still want this disease researched and a cure found. The ALS Foundation helps fund research and possible treatment, and I have donated to them through United Way and other charities.
What else can I do? I celebrate his life and try to honor him with mine. That’s the best I can do. I’m glad I was able to spend a little time with him near the end. Meanwhile I pray we will eventually know enough about this terrible disease to find a cure for it.
WARREN DOMKE is a columnist for the Pleasanton Express.