I would like to add a little to what Nonya has said about the gymn ball. I have problems with physio as I find it so painful. I need it as my core stability and muscle tone are so poor, but doing any exercise causes more pain and more damage. I discussed this with the physio at UCHL and she said to start what I can already do without too much pain. In my case that means sitting on the gymn ball for about 30 seconds. The idea then is to increase, very slowly, the length of time, and the number of times, all the time keeping it just within my comfort zone.
I use a wheelchair sometimes when I go out. I cannot self-propel as my shoulders and wrists cannot cope, and I don't use sticks or crutches for the same reason. I have splints for my wrists and ankles. I need someone to push my wheelchair, without this I would definitely need an electric one. However, I still bought a self-propelling wheelchair as it allows me to at least position myself, even if I can't move far.
I know some people on here have had wheelchairs reccommended by OTs so yes, asl her next week. I was fed up with waiting for an OT to come and see me so I bought one from e-bay!
Diagnosed HEDS December 1st 2005. DD1 (20) HEDS and scoliosis (now corrected by surgery), diagnosed June 2006. DD2 (18) mild HMS. Son (11) some hypermobile joints, poor muscle strength and seems to be developing scoliosis as well, woopee!