My hands shake a lot. On Wednesday, while at the ALS Clinic, one of the doctors was discussing the shaking with me, and commented that it really wasn't spasticity so much as it was a kind of tremor. So I asked, what kind of tremor. She said she wasn't really sure, and that it might be related to my medications or perhaps some non-ALS source. I pointed out that the shaking started after I got ALS, and has gotten worse as time has gone by. Correlation, but not necessarily causation.
That's the problem with this stupid disease. You're never sure if what you are experiencing is a symptom of the disease, or just a symptom of life in general. Was it ALS that caused my terrible shoulder cramp on Tuesday, or was it just one of those things? Do I sleep 12 hours straight as a result of ALS, or just because I have no structure in my life to force me to get up in the mornings?
There are things I know for sure are caused by ALS; loss of muscle strength, failing fine motor control and coordination, constant inexplicable exhaustion. Then there are the things which probably would not have happened without ALS; weight gain, edema and swollen feet, deep vein thrombosis. And finally, there are the things which are happening just because I am getting older; bladder issues, failing hearing and vision, loss of strength. Oh, wait. Loss of strength is ALS too. So there you go.
Here is an even better example. Yesterday I got up and didn't bother to get dressed. I had company coming in the evening, but I was alone for the day. Katherine was not here at all; she had commitments for the day and evening. I transferred into my wheelchair and rolled into the kitchen to make coffee and toast.
I made my coffee and, after putting in the milk, realized I didn't have a spoon to stir it with. What I did have was my clean knife for buttering my toast. So rather than spin my wheelchair around to get a spoon, I just used the knife to stir my coffee. I came out clean, and warm. Then I used the knife to butter my toast. As I sliced off a bit of butter, it fell off of my nice warm knife, straight down into my private parts.
Now I'm pretty sure that spilling butter on my penis is, in some way, related to having ALS. First, there's the wheelchair in general, and not wanting to turn about. Then there's the shaky hands and a warm knife with butter on it. There are so many other things to which I could attribute this novel experience, but I'm going to stick with ALS. And next time, I'll be more careful with the butter.
Mad. That's the emotion I think. It's like a private indignity, because nobody saw it. It's the same thing with trying to wash your hair with one hand – how do you get the soap in your hand if you can't squeeze the soap bottle, much less raise your arm to reach your head? How do you go back for ketchup once you're settled in the living room? How do you put a pillowcase on the pillow? People think of ALS as you can't turn the key in the door, but it is everything automatically compromised and deduced to one big hassle. Dealing emotionally with it is worse than not being able to use a spoon because it doesn't end with a spoon.
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