I'm A T-Rex

The last couple of days have been really difficult. It has been a couple of days where psychological adjustment has been as driven by ALS as physical adjustment. In the last couple of days, I have reached the failure point on my left arm, and pretty much on my right arm too. I now have to have help in the shower washing my hair, help with shaving as I am no longer strong enough to lift the electric razor, help with picking up anythnig and everything, help with eating. That's the biggie.

Help with eating was something I hadn't thought that much about. You see I thought that bulbar ALS would impact me first, taking away my ability to swallow. It had not occurred to me that I would still be able to swallow just fine, but would be unable to lift a chicken drumstick up to my mouth. That's what happened yesterday. That's when I hit that psychological wall, the one where I realized with complete solidity that I was going to die.

It kind of happened the day before, on Monday, as well, while I was lifting a can of beans. I had been shopping and was taking full advantage of the lift on my wheelchair to position myself higher than the groceries, so I would not have to extend my arms in order to lift. Yet even then I could not get a can of kidney beans out of the shopping basket. So I left them, and asked Kathy to do it when she got here Tuesday.

Even now I am having to rest my hands heavily on my laptop in order to be abe to type. It's another thing where adjustment is key. I knew I would lose my arms, as I am doing. I hadn't thought about what it would be like to try to type without being able to hold up my arms. Yet it's not as if I can't get my arms and hands to work. It's just that any target for my arms that is more than immediately next to me requires that I kind of toss my arm out, hoping the momentum gets my hand close enough to where I can grasp the target, using whatever I can to rest my upper arms along the way.

Breakfast cereal is a great example. I keep it on top of the freezer. I cannot get my arms up hight enough to reach the cereal, even with lifting my wheelchair. So what I do is get my arm as high as I can, then let it rest against the side of the freezer. At this point my hands come into play. I use my fingers to slowly lift and pull my arm up, up to where I can rest it once again on the edge of the top of the freezer. Finally, hands only work their way to the box I want. I grab it, then let gravity bring down my target. Getting it back up there is something I leave to the HCA's. I should let them get it down too, but I want to do at least something for myself.

The secret adjustment I have made, for the most part. is to keep my upper arms close to my body. That way I will have maximum lifting strength from them. There will be no extension strength; that ship has sailed. So I revert to using my upper arms only. It's kind of if I have become a T-Rex, with really short, and really weak, arms. Except I don't get to rip my food apart with giant teeth and clawed feet.