I'm wondering if anyone has been told what to expect as the disease progresses. All the information I can find only says "it will get worse" - "muscles will continue to weaken," "you will become wheelchair-dependent," etc., but doesn't give any info beyond this. Does it lead to total incapacity, like not being able to move a muscle? What does "end-stage" SMA (if there is such a thing) look like?
I also wonder this myself
I would love to know
Studies show that the weakness plateaus at a certain point. Hopefully with new treatments maintaining strength will be easier.