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

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

Dear Ali and Allsion's mom,

I couldn't help but notice your post and wanted to say to hang in there and don't give up. I, too, experienced this where my left leg would either give out or move in a way that was unexpected. (My rsd began in the left). I never did get an answer as to what was causing that specifically. But it is real. It did get better over time. It puzzled my therapists and docs but they didn't doubt it. It saddens me to see that there are still medical people or physiotherapists that can doubt this.

I am aware of the reluctance by some to give wheelchair assistance too but the thing is that quality of life matters too. For me it was liberating to be able to use a motorized scooter for those times when an outing meant long distances of walking. (it meant i could actually GO out) Especially on the days when the bad leg was particularly weak. Shuffling around on one's bottom may work but it does take a lot of energy to do and doesn't work in a mall lol....half the battle with this rsd monster is how one is treated. IT's so counter-productive when a pt voices doubt. Encouragement is the way to go.

On a hopeful note, my own situation became better over time. My left leg gives out rarely now. I remember deliberately standing with mnore weight on the bad leg when I was in a situation that was "secure" for example, when standing and brushing teeeth when i knew i could hang on to the counter with one hand and if i did fall it would be onto a soft rug and not too hard lol. I had some thought i might strengthen my leg that way. Even did leg lifts while in bed to strengthen the muscles. (lifting the leg about 10 inches up in sets of 10 then up to 30 as you get better, with the ankle extended, then with the toes pointing up etc) you probably can get some exercises off the net for leg lifts....

I also had a relaxation visualization tape that I listened to every day. It helped with the tension in the body.

More importantly don't give up. Whatever mobility you do have keep working on that.

best of luck and stay strong.

carousel ( Ina)

I should have remembered that one, Frogga... lol! I still do go around on my bottom some. At times that is all you can do because of fear of falling down stairs, onto the floor and off of things. It helps, but please don't forget to weight bear at least a little bit!! That is very important!

I'm posting something I wrote about on my blog last month which might shed a light on the reason for balance problems. I personally have balance issues and walk into things all the time. I think it has to also do with spacial awareness.

"BBC News has a current report on two teams, from University College London, UK, and the Swiss Federal Institute of Technology in Lausanne, who have been able to induce out of body experiences using virtual reality technology. They believe there is a neurological explanation involving the brain circuits that process sight and touch.

Using a camera and goggles researchers were able to induce a feeling that the virtual body was their own body.

This is much the same as when I do mirror visual feedback. My brain interprets the single limb and it's mirror image as a whole body.

When the camera was switched off and the volunteers were asked to stand where they thought they were during the experiment, the volunteers stood where they perceived the virtual body to be.

With chronic pain such as CRPS/RSD it is known that there is an altered body schema and the neurotag is smudged. This basically means that the brain hasn't a clear focused image of the body and where it hurts. The pain spreads out just as if you rubbed a black dot and made it smudgy so pain, instead of being focused on one spot has spread out and is hard to explain. I wonder if the this sense of being where the virtual body was imaged as in this experiment, could help explain why many people with CRPS/RSD have problems with spacial awareness and bump into things.

"Dr Henrik Ehrsson found volunteers had a physiological response - increased skin sweating - when they felt their virtual self was being threatened - appearing to be hit with a hammer."

If you can induce an autonomic nervous system response such as sweating from a threat to the virtual body it helps me understand why my body is calmed by seeing my mirrored limb without threat or pain. This idea of seeing the whole body or the body as a whole clarifies for me the need, when doing mirror therapy to see the both sides of the body (left and right) as if viewing a whole body. This differs from thinking of just seeing the mirror image of a good side.

At present the Interfaces group in Manchester in the UK are doing research on using virtual reality technology to relieve chronic pain. They already have succeeded in reliving Phantom Limb pain and are now working on CRPS/RSD.

jeisea
http://www.crps-rsd-a-better-life.blogspot.com