Monday, 16 May 2016

I'm Getting Worse

I have, of late, had this profound sense of "getting worse". Of course there is no other "getting" with ALS; it's a uni-directional disease, progressing only downwards. Yet I have gone through long stages where it felt like little or nothing was happening, or at least where whatever was happening did not affect my life all that much. Now it's different, now I feel it deeply. I am getting worse.

There are no noticeable changes which I can point to that will allow most people to see what I mean. This disease is not dramatic. I won't wake up one morning to find myself immobilized. The changes happen slowly, incrementally, almost unnoticed if you are not prepared to see them. It makes it easy for some to deny the changes, in the hopes that if they don't see them then they are not really there. I assure you, there are real changes happening.

I have noticed, over the last month or so, a marked increase in the difficulty I have in transferring from my wheelchair to my couch. It's even more evident on the return transfer. I've also noticed a substantial difference in the work effort needed to sit up in bed when I get up in the mornings. Then there is the increasing difficulty of the transfer to and from the toilet; it's getting very difficult. My laundry basket is getting heavier, more difficult to lift. Groceries in a bag are becoming too much, especially a full bag.

These are all things that most people won't notice. Nor will they notice the increasing difficulty I have in wheeling my wheelchair about. That's because Katherine is always behind me, quietly pushing my chair to make it easier for me. As to the other things unseen, most of them happen when nobody else is about except for Katherine and my care givers. You probably can't see it at all, as there has been no dramatic change.

Trust me. I'm getting worse. I see it. I feel it. I know it. My arms are failing me, slowly and steadily. Perhaps not so slowly. I've said before that I can no longer make the transfer onto my truck seat. Only a few people have seen that. The rest is the quiet, slow, behind the scenes work of ALS. I can prove it, if you want to come and see. It doesn't matter though. It's real.


  1. Can TOTALLY relate. I'm about to move back in with my elderly parents; I'm scared to death of losing my arms, though, as you said, it constantly gets worse.

    1. Carolyn, I am so sorry to hear about your situation, your loss of independence. I can tell you that my 84 years old Mom would love to have me in her home. But she would be unable to care for me, and her apartment is unsuited to wheelchair use.

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