[Katilea]

Hi

Sorry its long but please read as I desperately need advice and am housebound so have no other way to get this info.

I have been diagnosed with Ataxic-Dystonic Quadriplegia in my forties. (now 42, F, 5ft 3 and half) My ataxia symptoms started in early 30's with just an ataxic gait and needing a walking stick but was needing wheelchair by 35. (18 months after onset) I put on loads of weight and then found ways to exercise and dropped from 16st to 11st 7.

Then I started getting involuntary movements which weren't part of the ataxia and after another brain scan they discovered it wasn't cerebellar ataxia as first thought as there had been no cerebellar degeneration but I was clearly having difficulties with messages between brains and muscles.

I was struggling to get used to my new body for a while and stopped exercising i went up to 12st 7. Once I got used to the involuntary movements and relaised I could burn more calories possibly, I tried to start exercising again which is difficult as I can only do a few from wii fit and even with half hour routine was only burning just over 100 calories. I'm unable to do any fast aerobic exercises due to lack of co-ordination in limbs.

So I saved and bought a passive trainer bike and now I can burn around 700 calories a day by 6 x 15 mins session a day.

I'm also on a calorie count forum and someone on there said I'm not losing weight cos I'm eating too little and burning too much, they thought I may burn up to extra 500 calories a day if it was similar to parkinsons.

However, I don't have a constant tremor. I get intention tremor trying to do some things ie write, fasten buttons, laces etc but mainly arms are just a jerky motion when trying to do voluntary actions, I also get involuntary stiffening of arms and legs but only lasts short time and more or less constant flexing of fingers/hands at rest (similar to a mild-moderate athetoid cp?).

I'm wondering, without doing exercise how many extra calories a day I maybe burning from the involuntary movements?

My local GP/community nurses have never seen this condition so haven't a clue and I'm in a small village and virtually housebound (no transport, very expensive to get powerchair into town to get anywhere). Only stuff online about calories tends to relate to huntingdons or parkinsons...

Any ideas please??? I don't want to be accidentally sending body into starvation mode by over exercising if I am actually burning up to 500 cals a day in involuntary movements, but deperately need to lose more weight as for my height I am considered obese (now 12st) and I have chronic lower back pain as all my weight is around my middle/abdomen so can only sit up for a few hours at a time before needing to lie down again.

Thanks

Kati