Mild symptoms

I happen to have found out that I have inherited late onset cerebellar ataxia (probably SCA6) from my father. Dr Giunti, my ataxia neurologist, thought this because of the confluence of my family history and the report from the neuro-opthalmologist she sent me to who reported on my patterns of eye movement that are typical of ataxia. I am 58 and I got the diagnosis some two years ago.

I imagine that most people, when they see me, do not think I have ataxia, because I do not exhibit any typical symptoms. In fact I am hardly aware of my symptoms. I know that I am more careful with some activities than others, for example I always walk up and down stairs holding on, whereas in the past I would run without thinking about it. My slow reading is probably due to limitations in my eye movements. Also, I was recently holiday and sightseeing meant that I climbed up some steps which did not have a rail - the climbing up was easy but I found the going down very difficult. Generally I have learned to compensate (without really being aware of it) so that ataxia does not interfere with my daily life.

However, I have the image of my father who, by my age, zigzagged when he walked and was already slurring his speech. He lived into his early 90s (so ataxia did not shorten his life) but was progressively more and more physically disabled, using a wheelchair, his handwriting was more and more difficult to read because of his disturbed fine motor control, and his speech was more and more difficult to understand.

Although I have now come to terms with the fact that I will acquire these symptoms in the coming years (or decades), for the first year or so after my diagnosis I found it difficult to entertain the idea that, as I grew older, I would be disabled like my father.

I have not come across people who have been given a diagnosis of ataxia, but for whom the impact of the symptoms lies in the future. I wonder if that applies to anyone on this forum who could share how they dealt with that knowledge, or if anyone knows of others who are in a similar situation. At the moment I feel 'unique' and I would be interested in hearing from or about others like me.

Thanks.

6 Replies

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  • Hello, I was told that I have Late On-set Freidrick's in 2006, when like you, I only had some difficulty with Stairs with out a rail, also I felt that I had some slight slurring in my speach. Now I use a stick (or a frame on very bad days) and have steadly got worse so, like you, I fear getting "more" disabled, so I try to make the most of what I have now and try not to think about it.

    Nigel

  • I am now experiencing the symptoms of ataxia, but a few years back I was in your position of knowing it was going to happen in the future. It was back in 1994. They had just discovered what was wrong with my Dad (SCA1) and how to test for it. I had young children and wanted to know if I had inherited the faulty gene, because I did not want to have more children if I had. I do find the possibility of passing on the gene very hard at times but as my daughter often reminds me, neither she nor I would be here, so I am grateful that I did not know before I had a family, and so did not have to decide. .

    We are all very different. but it took me about a year to fully accept that I have ataxia.It is very like being told someone close has died and I went through all those emotions. You tend to have good and bad days. I find it does help to have hobbies and try not to think too much about what may or may not happen.

    A few close family members and friends, about my age, have died over the years and it has helped me realise that even though I would rather not have ataxia at least I am still here.

  • Hi - I am 70 in November - I was also diagnosed about 58 but with no known cause - just Cerebellar Ataxia.

    I was told it would be very slow progression and that was indeed true and am lucky that it does not affect my speech. I now walk with two sticks.

    I would like to say I get on with my life without thinking about it but I wouldnt be on here if that was the case.

    I am fortunate to have a caring husband but he is in his 72nd year and has diabetes so we 'care' for each other.

    What I would advise is to 'claim' whatever benefits you can before you reach retirement age - I didnt do this so when I needed hand controls on my car, I didnt qualify. However, had I applied before retirement age, the benefit award would have continued for rest of my life.

    When I am driving, I feel in total control of my life until I need to park!

    I would also recommend Wii fit exercise and healthy diet.

    Take care, Patsy

  • I would say that my symptoms are relatively mild at the moment although I find that I'm very unsteady on my feet. The left side of my body is much worse than my right and I use this to my advantage as I am right handed. I find using a rollator/walker much better than elbow crutches. I use both but have slipped using the crutches on wet floors a few times and once placed an elbow crutch onto a bit of polythene while walking causing me to slip and fall over. I can walk on my own not too bad but don't feel safe.

  • ..I would add that my mother died at 57 years and as she was crippled with rheumatoid arthritis, no one considered a neurological problem.

    I feel sure she had ataxia too but without evidence, I have 'no history'.

    My mother had very poor diet both during the war years and afterwards and I think that my body copes much better than hers. I have been very health conscious since turning 40 although not aware of my balance problem till my foot straightening operation when I was 59 - the physio remarked on it. It is only on reflection that I am aware of balance problems all my life - never thought anything of it. So much easier for the body to compensate when you are young.

    Patsy x

  • I am now 68 years old and have been suffering from balance problems for the last 20 years, also eye problems, my eyes seem to be moving all the time when I try to concentrate on something I cant use stairs without a rail to hold. I have had all sorts of tests including for epilepsy and MS. However no cause could be found, My nieces daughter was recently diagnosed with Ataxia, she is only 21 years old and her symtoms are very similar to my own although she is progressively getting more disabled where as my condition has remained more or less the same, I have had quiet a few bad falls and broken bones. because of my nieces diognosis I have asked my GP for a referral to a Neurologist and have been waiting now for about 6 months. I also have Rheumatoid Arthritis, I am not sure if I am over reacting or not.

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