It's pretty hard to describe. Unless I'm really weak, my legs move normally (when I'm really weak, they just don't hold me up and I collapse). It's my upper-body that isn't normal. When I take a step forward with my right foot, from the waist up I tilt to the right. Then with the left foot, I tilt to the left. Sometimes I sort of lean backwards and arch my back as I walk, but that's on purpose because it stops the swaying. I can also compensate by throwing my hip out to the right as I take a step with my right foot, and so on, only the last time I tried that I got a rude comment from a guy in a pick-up truck. I decided I'd rather look "handicapped" than, well, you know. Less chance for misunderstanding.

When I'm walking with family and friends, they tend to grab my arm, because I look like I'm about to fall over. But I never do, though I sometimes crash into walls. When the swaying is extreme, it sends me off balance if I'm not careful. I stumble not because my legs aren't working well, but because the swaying of my upper body throws me off balance.

From what I've heard, many of us "wobble" and feel off balance. When I first started having symptoms a year ago, my doctor thought I had an inner ear virus. I've heard people here mention crashing into walls. I think many of us have weak side muscles, and the only unusual thing about me is that it's my most severe symptom.

Oh, about what you said, that it almost looks to people like you're doing it on purpose: I have heard that from my family, too! (Not that they think I am--but that they would think that if they didn't know any better). I think it's because all my weird movements are sort of slow. When I collapse, I don't just fall to the floor--I go down slowly. I haven't totally lost muscle control--the muscles are just weak and slowly give way. They don't just shut down completely all at once. They sort of gradually give up. Maybe that's it.

By the way, I find my rollator extremely helpful. It steadies my upper body and gives me a seat so I can rest and save my energy. For example, when you go to a department store, you spend some time standing--looking at the merchandise, waiting in line, etc. The rollator gives you a chance to sit. It makes a huge difference for me. This is the one I have:
http://www.amazon.com/Medline-Deluxe...1639565&sr=8-1

Abby