Monday, 11 July 2016

Always Losing Something

It's creeping incrementalism, the slow and steady loss. That's what is getting to me most these days. Some PALS refer to ALS as "Always Losing Something". They're right. That's exactly what it is. A while ago one of the people in my trivia group noted that getting into the truck seemed a lot more difficult now than it did last year. He seemed quite shocked about it. Of course he hadn't seen me make that transfer in a year, so he had the time differential to notice the change. But it doesn't all happen in one day. It creeps.

The transfer to my bed is another good example. This morning my Home Care Aide was helping me with that transfer, keeping me from sliding back down the transfer board as I made the move off of my wheelchair. It was the first time I felt like I really needed that help. This is not a sudden development. There is a whole, sad story of loss that gets me to this point.

Three years ago, even though I had recently gone into a wheelchair, I could push myself vertical and my legs would still bear the weight. So to get into my bed, all I did was the forced vertical and a quick rotation into a sitting position. As time went by, I lost the ability to do the forced vertical, so I started doing a simple pivot transfer, lifting myself out of my wheelchair, twisting my body sideways, and sitting on the bed. Time passes. Eventually I found I could no longer lift myself in one go, so I split the difference and sat on the wheel of my wheelchair at the halfway point.

More time passed. I found that a stop in the middle was not enough. I had to stop once more, with one cheek on the bed and the other on the wheel. Even that discomfort was soon lost to me. I had to start using the transfer board.

The first time I used the transfer board to get my my wheelchair to my bed, all I did was slide up sideways. It was one clean movement. Time passed again. One day I found it took me two pushes to get up the transfer board, then one day it took three pushes. Now I am up to four and even five pushes to make the complete trip from wheelchair to bed. Plus I tend to slide backwards these days, thanks the the very slight slope on the board.

Soon no amount of pushes will get me across that board. I will simply not be strong enough. It won't happen all at once; it will happen a little bit at a time. When I reach that tipping point, I will start using my transfer sling full time. It will be another change. Some will see it as dramatic; it isn't. It's a slow, steady, losing process. Always Losing Something.


  1. If you had a powerchair with a seat elevator, you could make it a downhill slide both directions. I don't know if that is available to you, but its worth finding out.

    1. I have a power chair with a seat lift, but I can't use it when I go to the bathroom. It's too high for the toilet transfer, even when fully down. So I need my manual chair.

      I'm changing to a commode chair soon, but I will still have to transfer from the bed to the commode chair.

      The sling is already in place in anticipation of these problems.