The best thing I can say about the decline in my arm strength in the last couple of weeks is that is has been remarkable. My legs went like this, going along with seemingly no change then a sudden drop in ability or capability. One week I could walk a block or two, the next week I would be unable to make it across a Canadian Tire parking lot.
Over the last week or so, I seem to have almost completely lost the ability to lift myself free of my wheelchair. It's almost as if my arms have gotten shorter. I can lock them and lift, but the clearance is less and less. It's gotten to the point where I cannot reasonably lift and transfer myself from my wheelchair to any bed at all, let along a high hotel monstrosity. I just cannot seem to lift off.
This is all a part of the continuing, invisible decline that I am going through right now. When people are with me a lot, they see it in the exhaustion and inability. For those who are just casual observers, they would not see much of a change, if any at all. For those who help me, they see the slow way I deal with hallways in hotels and sidewalks outside, the difficulty I have with lifting even smaller things, my complete inability to lift myself.
This part of my decline is so insidious that I appear unchanged; I still hear the occasional "other than the wheelchair" comment, although they are getting fewer and farther between. When it is finally noticeable, people will ask what happened, thinking I was doing so well. I am not doing well. My arms hurt constantly and they are increasingly weaker and weaker.
I am pretty sure I have reached the point where solo travel is no longer a possibility; we'll have to see. I am pretty sure that the boundaries of ALS are catching up with my boundless desire to live independently. I'm not giving up, not by any means. I am being forced, arm wrestled, into the acknowledgement of my condition. I can still do stuff, lots of stuff. It's just getting to another, more limited place.
The odd thing is that my arms are still probably stronger than a great many people I know. I can still drive, easily. I can still twist the top of a screw cap beer bottle where others cannot. I can still type. I'm not done yet.
Oh my dear I am so sorry for your loss of arm strength. I wish it were different as of course you do. I continue to love you very much not that it helps with your condition. I pray for your health to be good but prayers often go unheard.
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