Hi all
Alison mum here
The balance problems have not improved - in fact it is now becomming harder to walk Alison, especially when she is tired in the mornings
The gutter frame wasn't a sucess - it won't run easily accross a mixture of carpeted, tiled and wooded floors in the house and doesn't provide the independance that was intended by its use
We were at the hospital yesterday and it took two physios and an OT to get Alison to stand and bear weight through her good leg for the briefest of moments
I showed them how I lift, walk and handle her and keep her mobile but was told I shouldn't be doing that any more as it will cause problems for both of us
Their answers to mobility problems around the house - shuffle on her bottom !!! With an RSD leg banging the floor no less !! No-one suggested any other way around and told me we would have to wait years for an electric wheelchair (which coincidentally our Local Authority OT is trying to organise)
It is no wonder Alison is tense dealing with people who believe shuffling around the house on your bottom is dignified - and even if she did do this not one of them could explain how we would get her back up into a chair when she no longer has the strength to support her body weight through her good leg
If anyone has any ideas on mobility for people with RSD in both arma dn leg or for ways to release the tension I would be most grateful
Andrea