I stumbled across this forum while looking up Brown Sequard syndrome and exercise to find any good tips. Reading the posts here have blown me away because I've never met anyone with BSS and I've been living with it since I was 13 yrs old (I'm now 28). Thank you for sharing your experiences and struggles as I find it very difficult to describe what it feels like....so generally I don't. And since I've been living with it for so long, it's just become part of my life and I've learned to compensate (I think) really well. For me, it appears that mine is less severe than some people as my legs are mostly affected and my upper body is fine. My right leg is the weaker one (most frustrating) and the left has decreased sensation (not a big deal).
There was a post from a 17yr old asking about what the future holds... even though everyone is different I can say that I went from absolutely no movement in my right leg, to moving my toe, to walking with a walker, to crutches and eventually walking unassisted. Every once in a while someone will point out that it looks like I'm limping....but that's usually when I'm tired. I can walk, run, hop, skip and jump and ski. It may not be the normal technique, or the proper muscles firing, but I manage. Swimming was my favourite thing during rehab because it made me feel human. It's a very long and frustrating process. To this day I still notice improvements. This year I ran a 10km race and it was so exciting ... so keep working on it as much as possible. It's annoying but your PT can be your best friend