When ALS was destroying my legs, my ability to walk, I noticed a pattern in the way it went about its business. I would be fine, stable for a long time, then, over the space of a few days or a week, I would experience a substantial change in my legs. I used to refer to them as "bad leg days". There was no consistency in the pattern, no minimum or maximum duration of the stable period, no measure of rapidity for the decline. It was just a sort of ebb and flow thing, where I was good for a while, usually a long while, then I was bad for a short period of time, then I was stable again with a new, lower level of normal.
This is happening in my arms now, right now. I am going through a period of rapid decline in my arm strength. They were going slowly for a long time. Now, in the last couple of weeks, I have noticed some fairly dramatic changes. I don't know how long this period of decline will last, or where things will stabilize. I just know that I am sliding right now, sliding downward in arm strength.
The obvious elements of this slide are my increasing inability to pick things up. Yesterday I went to pick up a bottle of gin. We had company over and I was making martinis. I thought to myself, as I picked up the bottle, "Gee, this thing is heavy." It's a thought which I never would have had in the past. I noticed when I made lasagna the other day that it was becoming increasingly difficult to lift up the full lasagna pan.
It kind of topped off yesterday when one of my young friends came to borrow my camping cot. I can barely pick it up anymore. Yet she, tiny little slip of a girl that she is, just grabbed it and hoisted it around like it was nothing. She said it was heavy, but it sure didn't look like it when she picked it up.
This slide will stop somewhere. I will stabilize for a while someday. Then, thanks to the joy of this disease, I will go through this process once again, losing and seeing the loss. On the other hand, I'm still here. And what the hell, someone else can carry the gin; I can still make the martinis, for now.
You sound in good spirits (oops a pun!). Yes, and by letting others carry the gin, you give your loved ones a chance to help. I found there were so many days that I was frustrated not by the ALS, but in finding ways to be helpful to my brother! So, in a way you are giving a gift to your friends in letting them help. And hey, they get a martini made by Richard! Keep living Richard!
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