I went round the house on my bottom for 3 years. My mother carried me around and up and down the stairs (4 flights!) until last Christmas (even though I have been hoist dependent for a year). When I was losing the use in my legs she had me strapped into the gutter frame with her walking behind me holding me up with a transfer belt with me leaning on her and the frame with my sister lifting my legs forward with my shaking and kicking everywhere totally unable to hold myself up. We did that for years until I lost the ability to hold any of my muscles up (I now can't sit up without straps/ postural aids/ splints/ tilting/ someone holding up or hold my head up at all). All I can say is we have ignored the OTs and physios the whole way through because it is the only way in the UK to manage this thing. Equipment takes years to get hold of and the less you move the worse you get. I know that as I have been unable to move for a year and my deformities and contractures have worsened an awful lot since that time. There is no dignity with RSD. There is no dignity with going round the house on your bottom, but there is significantly less dignity in being stuck in bed at all times.

That's just my view though.

I know some mothers who have got very severly disabled children around the house on sliding sheets or using transfer belts because it is the only way to continue to have a life at all. (As in at the moment I have to live in the sitting room in our house because we can't get my wheelchair into any other rooms - as I now have 24 hour carers my mum is not allowed to carry me and as I am 6 inches taller than her and now totally unable to move at all it is almost impossible for her to carry me around like she used to.

Has Ali tried either a tilt table or a standing frame.

So has Ali tried gutter crutches with you supporting her with a manual handling belt? hopping on the good leg, going on her bum or wheelchair. We also used to do a thing when it was just right arm/ right leg where I would have a crutch on my good arm and a person on my bad side and do a 3 legged race hop around. just an idea.

I really really would discourage the electric wheelchair idea unless totally necessary.. but that's just me. I use one and it makes it harder in many ways to get around! it's so reliant on having a van etc. If you do go down the wheelchair route why not get a manual wheelchair which can be propelled with just one arm. Also have you considered some of the more rehab programs for paediatric RSD such as GOSH?

Have they considered botoxing her hand?

I'm sorry if this email appears harsh but I have gone through it and I know that though I felt humiliated and undiginfied going round the house on my bum it did at least mean that I kept moving, which might have meant that I kept moving longer than I would have otherwise (because of the dystonia). It also meant I could go to friends houses and places that weren't perfectly accessible.

Love to you and Ali

Frogga xxxxxxx

PS did you find a swimming pool