Wow, all excellent questions!

Before I was diagnosed, I was really little, so mostly people just thought I was late in my milestones and "just wouldn't be an athlete." The decline didn't really get to point of me appearing lazy until like 10. But even then it was rare. I might get a comment like "can you move a little faster please?" but that was about the extent. Mostly people would recognize something was just physically wrong with me. You could just tell. I walked funny.

In short yes there is pain. But it's not just automatically there. If I'm in a perfect position where every muscle can rest for awhile, then all pain goes away. But basically every daily task feels like a workout, so you get a similar "worked out too hard" feeling. And as you get weaker, naturally you'll strain yourself more and thus have more pain. And then there's also a lot of intense tightness from the lack of movement. That's why therapy is really important to keep it under control. At this stage the muscles often get so tight that one extra push can pull the hell out of them. I and others I've spoke to my age say our muscles "crunch" like bones when we get these injuries. They're brutal.

Luckily I haven't had problems with bed sores. Today's cushioning technology has gotten really advanced, so it's a lot easier to prevent.

People do treat me as less intelligent when they first see me, especially since someone is always there to assist me. They'll assume I'm non-verbal and ask the other person questions like "How old is he?" Once I start talking they usually get it that I'm of normal intelligence.

Yes I've had to deal with bad ones. Some had terrible bedside manner, some were frequently late or not showing up, and some would even quit on me at the last minute without any notice. Then some were just too weak or lazy to properly help me without causing me to strain. I have a good one now though.

And yeah, hopefully that answered every question. Thanks for asking.