Reading some of the posts on here, is like looking into the future for me.
This was specifically the case with the previous post who wrote about feeling like her tongue was too big for her mouth. I'm guessing that the poster (Caz-something - sorry, I've forgotten already) and myself are at a similar stage, as her comments are EXACTLY how I feel at times. It is obvious too from some of the answers, that it could be a lot worse (and will be at some point).
As was meeting other ataxia sufferers. I spoke to a young lad who commented on my stick (I still use a wooden stick with a rounded end). The other guy was using an elbow-crutch now, but had previously used a stick similar to mine, before tremors in his hands/arms meant that he needed a stick with more support. However, he is still using just one stick. We worked out, by comparing the onset of specific symptoms, that he was about 1 year further down the line than myself. So I had a kind of window into my future.
It can be very hard knowing what your future will be like as ataxia progresses. But it is good to have that knowledge now, so that when that future is the present, it doesn't come as a shock, and preparations can be made.
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Iain_100
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I was talking to a friend on the phone yesterday who has seen me in my early stages of ataxia when I thought all hope of a bright future had gone. He was astounded by the improvement in my speech and could tell from my conversation I felt better about where I'm at.
Having spent Saturday evening at a barn dance, didn't miss one dance, and yesterday climbing up and down a step ladder to paint the kitchen ceiling I actually feel stronger, fitter and more able than I did 3 years ago. I know the condition is still destroying brain cells. I'm just busy diverting activity to new parts of my brain and going through the learning curve of doing things differently.
It seems to me every ataxia case is unique, as we are all unique. So I'm going to continue believing my 'blameless' past!! and healthy lifestyle have kept me from the worst and will continue to do so.
I know such positive optimism is hard to take sometimes, so I apologise to anyone reading this who thinks I don't know what I'm talking about. What I do know is that if you act as if it will be alright it changes the way you behave and it makes a difference.
I think my ataxia diagnosis has stopped me sliding into a stiff and painful old age by making it even more important to keep up the exercise, to keep talking and to keep finding things to do outside my own wobbly being.
Hi Iain, Im glad I have been able to "help/reassure"! I find it very reassuring that there are other people at the same "stage" as me too, and that the weirdest symptoms and feelings (that are really quite ridiculous when you think about them!) are not all in one's imagination.
My window on this has been my mother who had SCA, and I am very aware of what may well be in store for me.
But what is so great about this website is that there are people who understand, who have been there, and who can soothe and support. Thank you everyone.
Nigel - absolutely and completely agree with you about a diagnosis encouraging a general improvement in the amount of exercise and general looking after oneself. I was of the "It'll be ok, I'll start exercising next week" group, now I'm doing as much as I can, NOW. I'm trying to do my best with healthy diet etc too!
And lastly, thank you to my Neuro Consultant today, who listened with patience and understanding, as I reeled off all my daft symptoms, and then after examining me told me he'd found a couple more, like the tremor in my hand that I hadn't noticed before he pointed it out! He's brilliant and I hope everyone finds their Neuro as helpful as him. I know there's very little that he can medically do for ataxia, but for me, it meant a great deal that he understood what I was describing, that he had seen it before and wasn't dismissive of it and gave me all the time I needed in the appointment to discuss things with him.
I am a little nervous of seeing my GP now, and them just looking blankly at me when I get a new/worse symptom.
Hi Caz, Apologies for not remembering earlier. And you wouldn't be too nervous of seeing your own GP now. In my experience, although my GP knows not much more than I do, he really wants to know more. True, he doesn't have the depth of knowledge that a specialist neurologist does, but he is always genuinely sympathetic/interested to learn more.
My father is 79 years old and has SCA 1, as does his sister, and I. Year over year his SARA score (a test for rating how bad a person's ataxia is) remained unchanged. I had early symptoms and got rid of my symptoms completely. I am in touch with people from around the world who are also fighting and winning. You can fight this. There is a wealth of information out there. Please read my posts. I have written extensively on how my family is fighting ataxia and winning. You do not need to sit back and accept your condition, but you need to find a doctor willing to help you setup a multi-pronged attack including diet, exercise, mental health, therapy, and supplements.
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