Monday, 27 March 2017


I am becoming quite concerned about what will happen to me and when it will happen. There have been a number of minor changes in my abilities, all of which are hardly noticeable by anyone else but me. For example, I am having increasing difficulty getting my compression socks on, and off. This morning I had to ask Kathy, my HCA, to help me with them. I've also seen a decrease in my ability to roll from side to side a I pull up my pants. Lately I've been asking the HCA's to help me with the roll and the pull.

There is no doubt that I am well into decline in my upper body. The visible loss of muscle is just one indicator. There's also my need for help to get into the truck, my ever increasing use of the sling instead of the transfer board, the substantial difficulty I now have getting my underwear off while sitting over the toilet in my commode chair. Things which once were not heavy are now impossible for me to lift. I no longer buy milk in the large jugs; they are almost too difficult for me to lift.

Of course all of this is to be expected. I have a deteriorating, terminal illness. Notwithstanding the impressive research going on with respect to ALS, and the new treatments in the pipeline, it is unlikely that I will see a cure or treatment in my lifetime. That, however, is because my lifetime is expected to be fairly short. If I had more time, perhaps.

So I face the next months looking at what I will lose along the way. I worry about what I will do when I can no longer dress or undress, when I can no longer make the transfer to my wheelchair without help, when I am unable to manage the sling and lift on my own. Part of me says not to worry, just to deal with it when it happens. That is what I am most likely to do, regardless. On the other hand, thinking, worrying about things, wondering what will happen? This is who I am. I will worry. It's in my nature.

1 comment:

  1. It's natural to worry..being a worry wart myself, it would be Constantly on my mind. And yes, scary..hopefully it progresses ever so slow....