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
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I know you're right and absolutely perfectly said. I needed to vent because I was so frustrated by the totally inadequate medical system in which we find ourselves and the fact that, as you say, the more well-known and "sexy" conditions attract so much more attention. I almost pray that a celebrity will develop our disorder. Speaking to others with ataxia helps and manages to dissipate some of the frustration I feel at the unravelling of the old-school (and naive) belief that doctors are there to heal the sick. Sometimes, couldn't be further from the truth.
I like that, Paul! You expect nothing, from the medical world, so, that way, you don’t get disappointed! From now on, I’m going to use that strategy! Thanks Paul456!
Nigel, excellent post! Right on, with your evaluation! Here, in the USA, I have a similar problem, where the medics seem to sort of just state that I have Ataxia, but don’t help me, in any way, to deal with it, in my daily life! The practical aspects, of dealing with it, and getting emotional support, I get from fellow sufferers, on HealthUnlocked.com! I have found, especially since the COVID epidemic started, and has continued, that the medics, at least where I live, have an apathetic, I don’t care, attitude, seemingly. Even when I lose my balance, when I’m trying to walk, in an exam. One would think that I might need some advice, or maybe an assistance device, or maybe physical/occupational therapy. No, the medic just notates it, and that’s about it. I’m not the whining, complaining type. When I mention swallowing difficulties, I get the same reaction! So, I am left to my own devices, on how to deal with Ataxia! It’s just the way it is. I am lucky, in that, mostly, I have mild symptoms. Perhaps, that’s why I am given a less than enthusiastic welcome, when I go for my yearly Dr. visit! Each year, I invariably have several falls, and have been injured, a few times! I try my best, to be careful, but, sometimes, it just happens!
The single best insightful comment I’ve read. To add to that, at least Ataxia UK exists, where as I don’t believe we have an Ataxia US here in the states. We have the National Ataxia Foundation and I had the experience of being referred to the president and leading neurologist in the field of ataxia. It just further confirmed what you so well stated. They know today what they knew yesterday which is nothing really
We’re not alone when we have forums like this to share perspective. Not sure who said this but to quote :
“Time is only wasted when we spend it thinking that we are alone”
Very well said Nigel and Buffergirl too for your posts.Yes we are better at helping ourselves than the medical professionals. I know that gene testing for hereditary ataxia is the way forward but I fear this will not happen for many years.
Until then we have to look after our bodies and mental health as best we can. Having been on HU for many years, there is a sense that some maybe challenging the more 'traditional' approach to ataxia ie yearly appointments, medications to help cope with symptoms, various appliances to help us to stay mobile etc. There is much to be said for learning about what others do to help their ataxia. We are all individuals and need to share our experiences and knowledge better.
Another person in total agreement with all that nigel said. I am very open minded on the use of holistic therapies for both body and mind even if classed as a pasebo by some they have a calmiming effect for me especially meditation.
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