The person who posted this to the Motor Neuron Disease boards followed the link with this quote:
"It doesn't only affect us."
I am generally a very "social model" of disability kind of person, but sometimes it fails us. It fails us when we can't do things a different way anymore, when we simply can't do them at all. What the poster was referring to ultimately is being "locked in”, the point that all connection to the outside world ends.
90% of locked in people experience brain death in short order. I am working with a man a little older than me at a local nursing home, and he has been in that state for 4 years. He isn't quite locked in by medical standards, but lack of any kind of occupational therapy has denied him the use of his remaining movement - some level of blinking and a right finger twitch, a small ability to move his head to the right. He is still in there, and I am in awe of his mental stamina. He makes his high effort, small head movement when a pretty lady walks by or one teases him that she has lost weight. He opens his eye widely when dad asks him if he wants to try our newest contraption. We are making progress, and we may have real yes\no\maybe communication this very week! It is a great mystery, what he wants, what he likes, what kind of person he has become. I look forward to really meeting him.
I know that having my communication limited has changed how I think, not just how I express my thought. I think of things to say that didn't come to mind before, things pre-structured to get a positive response with few words. Conversely, I have inner monologues that are new to my thought life, unfiltered for sharing with others. They are the thoughts of a solitary person, even though I live in a bustling house. That is what my cage is doing to me.