What ALS Looked Like To Me

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ALS is a big ugly evil monster. Or at least that’s how I imagine it. It attacks its victims’ motor neurons, leaving sensory function and cognitive abilities intact. In other words, it attacks its victims’ ability to control movement, gradually taking away communication and the ability to swallow, walk, control the hands, and eventually, even breathe. All the while, the victim can still feel and think normally. The frustration and fear this monster causes is unimaginable.

Now let me tell you my story.

My paternal grandmother died of ALS when I was 16.  Her disease wasn’t diagnosed until a few days before she died.  How that happened in 1990, I don’t know.  I wish I could discuss that with a few of her doctors, but it’s probably best that I never had that chance.

(If you would like to read more about her and how amazing she was, read my Tribute To My Grandparents)

She had suffered for years from migraine headaches and horrible rheumatoid arthritis.  She was on so many medications that strange side effects were the norm.  When she started exhibiting new symptoms, including a lack of control of her arthritic fingers, the only explanation anybody came up with was that they were just more side effects of the strong meds she was taking.

The next thing I remember is that she started to lose control of her tongue. You don’t think much about your tongue until it stops working. At first her speech was slurred, and then eventually it was not at all understandable. She did her best to communicate, but we were all very frustrated trying to help her. Then she couldn’t swallow. She got so tired of Ensure. And then she couldn’t even get that down. She lost too much weight. Grandpa would try to keep some humor going and would joke with her, cajoling her to eat, but we all knew it wasn’t funny. We didn’t know what to do, though. Why a doctor didn’t suggest a feeding tube, I’ll never know. Probably best that I don’t discuss that one with them either.

Her arthritic feet had been surgically fused together to help her arthritis. This combined with her ALS was a recipe for falling.

The progression took years, but she finally lost control of her fingers, hands, arms, and then she was gone.

She never lost her will or her positive attitude. She wasn’t going to let this monster, though she didn’t even know its name, take that from her. It was the only thing she had left that she could control, I guess.

She was mentally sharp until the very end. Perhaps that’s the worse thing about this slow creeping disease. You can feel and think just fine. What you can’t do is move. And what good is thinking and feeling if you can’t move or function or communicate?

My grandfather was her caretaker. He was a champ. This manly tough oilfield welder loved and cared and nurtured until her fight was done. A year later he also died. They just belonged together, I guess.

So if you hear of ALS, know that it is an indescribably horrid disease that nobody conquers. It is a monster, ugly and unstoppable, taking down every victim it attacks. Maybe someday that will change.