Friday, 26 February 2016

There Is Nothing Anyone Can Do

I just poured a bowl of Alpha-bits for my breakfast. I went to put my spoon in the bowl and my hand shook sufficiently that I spilled half the bowl out while putting the spoon in. I've picked up the Alpha-bits. This kind of spillage is now a common occurrence in my life. Whether it's eating with a spoon, fork or even with chopsticks, dropping food as I eat it, thanks to shaking hands, is normal.

ALS is a tough disease. Even the anti-depressants can't take away that sad reality. It's hard to deal with the ever increasing weakness, the shaking, the exhaustion. It's a sad thing when the quality of my morning is measured on the quality and success of a bowel movement. It's distressing knowing that I will pee on myself at least once today for certain, and at some point will have wet underwear no matter what I do. They won't be really wet, just a drop or two. Just enough to remind me that I can't go pee the way I used to.

I have trouble chopping vegetables these days. Onions, peppers, garlic, carrots, potatoes; all of them present a challenge to me, not because I cannot cut through them, but because the repetitive action of cutting several of them tires me out. Mashing avocados for guacamole, mashing potatoes for dinner, kneading dough for baking; these things all force me to stop and take a break in the middle of the process. Katherine usually finishes them up for me.

These days even wheeling my wheelchair any great distance is difficult. Yesterday Katherine and I went shopping at the local Co-op. I wanted supplies for making lasagna this Sunday. I wheeled myself around the store while Katherine managed the shopping cart. By the time I got home, my body was so beat that I transferred to the couch and didn't move until bedtime. Katherine ate at the table while I ate dinner on the couch.

Like I said, ALS is a tough disease. It gets you a bit at a time, until one day you realize it has you completely. And there is nothing anyone can do about it.


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  3. (spellcheck again) I think it's unfathomable to other people what it's like to not be able to chop vegetables. First, there's no reconciling that an every day task is monumental. Second, what it does to the sense of who you are while everybody around you is the same.