Monday, June 21, 2004

A year of ALS.

Last year on June 20, I found out that my mom has ALS (also known as Lou Gehrig's disease). She'd been diagnosed with it months before, but for various good reasons wanted to wait to tell us. At that time she was having trouble with fine motor movements in her hands, and she lost her balance easily. She still worked and lead a mostly normal life.

This year, on June 19, I found out that my mom has a decision to make about her future health. Her breathing has gotten bad enough that it's time to put in a feeding tube, if they're going to do it. If her breathing gets much worse, they won't be able to do the operation. She still eats just fine if someone is feeding her.

She also should decide soon how much she's willing to use a respirator to keep breathing. At some point, breathing will be possible, but not automatic. It will require her attention. At that point, she'll need something to keep her breathing when she sleeps.

It's been a little over a year with the disease, and it's completely changed how Mom lives. She cannot walk. She can't user her hands. Her husband takes her to the bathroom. She speaks very slowly. When we learned she had it, we also learned that life expectancy after diagnosis is two to five years. A year later, it doesn't look as if another year will pass.
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