well I’ve survived another year!. . I’m now 42!
After 8 years I have a final diagnosis, although they are still unsure what the trigger was. Neuro’s say there’s not enough proof, although I have researched extensively on the internet and found Hypothyroidism listed as a cause for all the symptoms I have had so far.
I’ve found links between the extra involuntary movements and proprioception (bodies sense of where it is in space). Proprioception is a big issue with Ataxia. We have discovered that with proper seating support I can greatly reduce the extra movements and that also additional weight helps (ie wrist weights, weighted belts, splints).
Some days are better than others. Some days its much more noticeable than others and depends how tired I am to start with!
Yesterday was a good day! I woke up early, we managed to make it down to the big lake for Inca to have a run about, we love to watch the ducks, swans, geese its very relaxing. I managed to fit in quick rest before my friend arrived with her son and hearing dog ‘Holly’.
It was nice to have lunch, chat and a play on the Wii, then managed to fit in another rest before going out for a meal with my brother and his wife. They bought me one of those uDraw thingies for the Wii. I like to try and draw/paint but as I can’t sit for long I have to prioritise what I can fit in and sometimes by the time I’ve managed Inca’s walks and sitting to do stuff around the house I have to go lie down. It’s not easy to paint reclined without ending up wearing some of it, spilling the water and stuff rolling away!
I’m looking forwards to trying this out and hope it will help with keeping co-ordination in hands. I will be doing a review on it later from a therapeutic viewpoint, once I’ve had chance to try it out. I can see me enjoying been tilted in new chair and sat back drawing whilst I was resting. I’m hoping I could fit more in then if the new chair allows me to continue working on art or computer whilst resting without having to go back to bed and the time I can manage sat up can be doing more physical things like Wii fit, housework or going out.
With my trunk fully supported in new chair my movements won’t be as shaky or tire as fast so I should be able to lie there and enjoy drawing and be able to manage it easier.
My Neurologist does not think it will progress any further now, there are no signs of cerebellar degeneration on my MRI however I have had the ataxic gait since 2003 and the additional involuntary movements (dystonia) didn’t kick in until after I hit 40, although the stiffness has been present from the beginning. Despite them thinking it is not progressive in that sense, (of a typical cerebellar ataxia) both my arms and legs are affected by both, my throat muscles (affecting speech and breathing rhythm) and my trunk. Unless my brain scan shows physical degeneration of the cerebellum they cant offically call it Cerebellar Ataxia, so it is classed from a medical viewpoint and ‘need to label everything’ as ‘Ataxic-Dystonic Quadriplegia’ (quadriplegia meaning affecting ‘all 4 limbs’ not ‘paralysed’) This more accurately describes my condition in that the Ataxia started first then the dystonia and they are both combined in each limb.
This can have its advantages, the stiffness from the dystonia cancels out the tremor from the ataxia so I don’t have a constant tremor although I do get intention tremor on some tasks. The ataxia also helps weaken the muscle contractions from the dystonia and the involuntary movements interrupt them so I don’t have limbs stuck in positions all the time (as in primary generalised dystonia). so apart from this resulting in slow jerky movements I can still manage quite a lot for myself around the house.
Wii Fit and sitting unsupported on floor/balance board are still important parts of my physio routine as there are parts of the day when that’s needed to remain independent. (ie been able to stand for long enough to transfer to loo, car, manage a few steps with assistance).
Simple things like been able to sit and have picnic in garden with Inca and play with her on floor for short periods are enjoyable and help preserve sitting balance and strength in trunk muscles. Been able to sit on the rollator seat and push myself about for a bit also gives me a break from being sat in the same chair all day, and my legs still get exercise. Going backwards over the grass gives good resistance and works leg muscles. the swivelling castors on front also make turning into doorways easier than with manual chair. (especially going backwards) however the hard seat means I can’t sit on it for long, but its handy for getting from bed to loo, into kitchen to fetch a quick cuppa to bed etc!
Like my Rollator, I see my chairs/scooter as a mobility aid that helps me to get to where I want to go I don’t feel ‘stuck in it’, as I have still used regular office chair to use computer etc up to now or lie on sofa to watch telly or on the bed, I don’t just stay sat in the wheelchair. Although for safety purposes I need to stay in chair outdoors in order to go out independently, I don’t think I will see my new powerchair as something I’m ‘trapped in’ either and I’m looking forwards to been able to get through the housework quicker.. ie putting shopping away and hanging washing out is gonna be much easier and less exhausting with the seat riser feature of the chair and means they are jobs I can do for myself for longer without having to employ someone else to come and do them for me.
The right piece of equipment can be life changing so I await ‘Rubys’ (I always name my chairs!) arrival eagerly. 🙂