This is prompted by Buffergirl and her post about neurologists.
Ataxia as a medical condition is rare and therefore doesn’t attract money or medical interest. If, like me, it’s genetic then the only cure is going to be based on progress in dna re patterning, rna blocking etc, which will almost certainly be found for other more “sexy” neurological conditions. I expect this in the next 20 years! So we have to manage the condition and it’s myriad symptoms.
Each of us rare people with ataxia have a totally unique condition. Physically it may be combined with other medical issues. Emotionally and mentally we’re all in different places. We may exhibit similar symptoms. Wobbly gait, voice issues, swallowing problems and so on. These can often be addressed by topical help. Walkers, wheelchairs and handles. Voice therapy, tongue twisters. Smaller meals, mouthfuls or liquidiser. Help forums and Ataxia UK can also provide useful workarounds and great emotional support.
The western medical model is based on replacing broken bits or using medications to address a perceived lack. Lately Doctors have taken to asking the patient what they want to achieve. As patients we have joined in with the idea that a medical problem requires a doctor to diagnose and fix it. Before the NHS our parents (usually our mother or grandmother) would have a handy remedy for most common ailments.
Faced with a rare neurological condition mixed with our unique additions it’s no wonder neurologists have nothing much to offer us. They don’t really know where to start, apart from assessing us and telling us the condition is getting worse! Who knew? No cure in sight.
We can share what works for us on here, from supplements to aids. We can also support each other in coping with our condition. No one really understands my difficulties, but you lot nearly do and that is very comforting.
Dr Edward Bach, inventor of the flower remedies, in his early medical career, noticed how 5 people would be admitted to his hospital ward presenting with the same apparent condition. They would all be administered with the medical intervention for the condition. 3 would recover quickly, one would malinger, one might die. The condition was the same, the intervention was the same, only the people were different.
In developing the flower remedies his aim was to produce a range of remedies to work with the person as an individual. I should point out there’s no flower remedy for ataxia! They will however help with emotional health.
What I am saying in a roundabout way is we may or may not have been the cause of our ataxia. Either way we have to deal with the cards we’re dealt with. We would like more support from the medical profession, I think it’s a vain hope. We can support each other on here and I encourage that. Ataxia uk also offers all sorts of support from people who understand our condition, probably better than medics. It helps to talk and vent.
Nigel
2020..Possible treatment for Idiopathic Cerebellar Ataxia 
Cerebella ataxia 
