I have a good friend with it, when I first met him in the early 90's in his 30's he had just started having to use a wheelchair (though a manual one). He could still use a computer mouse and keyboard etc.
Since then he's slowly gotten worse over time. Now he is in an electric wheelchair and he can't control it himself (or I suppose he could with a mouth controller). He can talk ok, but can't really move anything else by himself. He's in an assisted care facility.
It's crazy how slow the change was for him, losing the ability to do things for himself over the span of years.
He said there's different kinds, I remember my mom having a friend with it when I was a teenager but she seemed to progress much much faster and she passed away a lot younger. But I don't know much more about it.
Whenever I ask him how he's doing he always laughs and says "still alive", he's amazingly positive all things considered.
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Uncertainty is an uncomfortable position.
But certainty is an absurd one.
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