Ataxia UK
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Finding out I had ataxia really threw me off balance (litteraly and figuratively)! I was in the habbit of always going a million km an hour and never stopping. Now because of lack of energy (very little) and still being stunned by what happend to me I am forced to take more than a few steps back. Back to the basics, start from scrach.

I'm trying hard to accept this and make this a new way of living. My suroundings however don't seem to look at it that way. They are growing impatient, saying things like it's been long enough. Shouldn't you start picking things up and start doing things again? You only do this or that, that' s nothing.

Who recognises this? I really feel like I'm doing everything I can. Even feel overwhelmd by the things that still need to be done. I'm not the same person I was before I got sick. How does one deal with others that don't understand?

14 Replies

Hi 😊

I don't think that feeling ever really leaves you😏 For me, it's has lessened but I still get frustrated and sometimes overcome with a sense of loss.

I've learned to 'go with the flow'😉 I'm kind to myself these days, it makes it much easier on my husband and the rest of the family.

Because I'm home every day, by far the biggest irritation is not being able to manage my house and garden... I can look at a 'job' and think 'why haven't you done something about this before now' 🙄 Then, as soon as my focus is on something else, I've completely forgotten the previous thought😑 So, nothing changes 😏

I have a sign on the fridge. 'Dust testing in progress, do not remove the samples' 😉xB


I can relate. Being busy with one thing only to discover that I have forgotten why I was there in the first place. Often for a completely different reason 😆



1 like

Reading your letter came at just the right time for me. My dear grandson (23) has just left after the w/e here. He commented that I do little and should "get down to the gym". This was said half jokingly as we have always had a great relationship and he would be mortified if he knew how much his words have affected me.

I have SCA6, diagnosed about 25 years ago after years of different tests and misdiagnosis. As we know, ataxia gradually robs normal living. Walking, balance, eating, speech, handwriting, cooking, gardening, handcrafts have all largely disappeared from my agenda. I SO want to do more. I have a very supportive husband who manages very well, but I do feel diminished that I can't do what I used to do and identify with your feeling of frustration.

I have accepted my illness and try to stay positive. Little triumphs help. I had a bad fall last October and after months of physio am now back on my hind legs with the rollator. But I do get tired and wobbly after a bit and here I am back in an armchair.. friends, particularly other disableds, family and laughter are very important to me.

I feel better already - thank you for the chance to write this down. It is important to me to be honest with myself and others. I suppose even "normal" people have off times and this a.m. was one for me. Onwards and upwards - I have so much to be grateful for.



I completely relate to this, I have only recently had Ataxia confirmed and am still coming to terms with the complete lack of energy for days on end and having to explain to people that I cannot make forward plans as I never know how I will be feeling. Having this help line is so good because we all seem to know and understand each other. I assume over time we will get used to our condition and adapt. Dont worry yourself about what others think, you must be very kind to yourself and dont worry about little housework chores that are not really that important. I have 3 beautiful cats that keep my spirits up.


😊I've had a succession of lovely cats 😊 xB


I know exactly how you feel. It is taking me a long time to accept my limitations, especially as I used to be so active. Its a bit like a grieving process for what was, and it is difficult for others to understand. You just have to take each dsy as it comes, some are better than others.


Hi, I know exactly how you feel!!!! I am a nurse working 12 hour shifts, although I can only do two now. I'm exhausted after one!! About a year ago my ataxia started to progress. I am 42 and at that time was going to the gym five 2hr sessions a week. I did cardio ie. Spinning for an hour and weights. I got an injury to my leg and I didn't know if it was my ataxia progressing or just a muscle injury from spin. My gap ŵas no help and I felt I had nowhere to turn. I was really down. Thought I was going to be in a wheelchair, gove up my job, my life was never going to be the same

I have cerebellar ataxia and it's hereditary. I always lost my balance etc, but I thought nothing else would happen to me!!!! I always went at 100miles an hour, my nickname at work was whirlwind 😜

Eventually I spoke to a really kind doctor at Newcastle ataxia centre who seemed to think I had an injury from excess excersise however it was making the ataxic symptoms worse.

To cut a long story short it has taken about nine months to slowly accept I have to slow down. Funnily enough I now prefer my life and understand what it's about more. I have cut hours down at work, I'm definitely less stressed. More importantly my brain and body feel more relaxed, I swim most days and do free weights and Pilates.

I am not in a wheelchair yet but im slowly coming to terms with it as a future thing. I have a stick but don't use it for walking as it affects my coordination.

Life is for living. Prior to my injury I feel I missed out on life because I was always in a hurry.

My leg injury has healed but I'm definitely a lot weaker when going up stairs etc. Tiredness is a major issue with me however I'm getting more used to it now and listen to my body. I find if I'm tired when I swim the tiredness goes away for a while.

I hope this helps a wee bit.



Hi Carol😊 I live at Ponteland, nr Newcastle.

I have a walking stick (which is nearly always in the way😉), I agree with your comment about co-ordination, and a rollator which enables me to have normal gait, like the feeling you get using a supermarket trolley👍 I should use it more often, it really improves my posture.

I need prisms in my glasses to control double vision😏 Great, no problem whatsoever when sitting. But, when mobile, definitely an added challenge to stability😉

Strange, but I'm also more relaxed these days, it certainly helps👍😉xB


I started using a rollator 2 months ago. I must say that it had made my life more enjoyable. It takes alot less energy to walk with my rollator. I wasn't looking forward to it but I'm glad I finally made that decision.

I also have trouble with seeing double every now and then. (Few times a week) Especially when I'm tired. Is this normal? Do you have this constantly?


Some people but not all, do have eye problems😏 Both double vision and Nystagmus are common. I do have both constantly. But, I've had very good care from the NeuroOpthalmologist at my local hospital Eye Department 🙂 I've tried various strengths of prism, an occlusal contact lens in the worst affected eye, Botox to tighten the muscle, and finally surgery😏

Initially, I had Iritis, that was in 1998. Surgery was the most successful, it's led to a much reduced prism in my glasses🙂

After my experience, I would urge anyone coping with double vision to seek advice. An Optician can make a referral, Hospital Eye Departments are able to give thorough examinations, it's worth it for peace of mind. 🙂xB


Thank you, I think I'll try that


I had a checkup this week with my neurologist. He said not much could be done with my sight because it isn't constant.

He could only advise me to adjust my activities while I have trouble with my eyes. Easier said than done 😕


😏It's easy give advice when you haven't experienced the problem firsthand. My eye problems came on slowly, at first I didn't pay much attention. If it does worry you constantly, for peace of mind see your Optician🙂xB


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