Ataxia and eyesight

Hi All, I am Stu (51 yrs). I was diagnosed with Ataxia some 6 months ago and have a lot of the usual symptoms: balance problems, dizziness, coordination problems, etc, which all cause day to day problems, particularly with walking. In fact I no longer go out, as walking is a big problem and I am unable to use public transport.

I was wondering whether my eyesight problems are part of the Ataxia, as my vision is blurred and I see double. I have recently been visited by an optician and prescribed glasses with prisms to try and combat this (which I am waiting for).

Does anyone else have vision problems due to Ataxia or is it more likely that my vision is unrelated.

Thanks to all for your responses......Stu.

10 Replies

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  • Hi Stu,

    I'm 58 with Cerebellar Ataxia. My eyesight is fairly good, i only use reading glasses. Every time i've seen my Neurologist though, one of the first things he does is check my eyes, so i think it's possible that the Ataxia can be the cause. I'm sure someone else will be able to give you a more concrete answer.

    KennyH

  • Hi Stu

    The website 'otvests' is worth looking at. I am keen to try one butI understand that as wobbleybe says they must be fitted by someone who knows the correct amount of weight to have.chinquecento

  • 🙂 OT vests can be supplied by post, a face to face appointment is not necessary. This is because they work on a different principle to the Balancewear Vest.

    OT vests are only weighted across the shoulders, applying deep pressure can be helpful with Trunk stability, and is said to help concentration, amongst other things. Vests are weighted according to an individuals basic weight, so assesssment can be done by phone or online.

    The Balancewear Vest will not be supplied before a face face to face assessment takes place. This vest has lots of internal pockets for small weights. The Therapist watches the person walk and assesses where posture would improve by weights being added to the vest, this requires careful assessment. The expected outcome is better stability and near normal gait.

    I've tried both vests myself at the National Ataxia Convention.

    🙂xBeryl

  • Hi

    My husband has the double vision and many years ago had prisms put into his glasses, spec savers were brilliant. He also has square wave jerks, his eyes move constantly as he tries to focus on a 'target' but as he does the eye shoots away making it very difficult to read, it is neurological.

    Sorry to hear your not able to get out and about, have you considered getting in touch with the social services with a view to having a personal assistant to aide getting out and about, otherwise you are likely to become socially isolated. My husband has a power chair, we have an adapted car, but he has started to use public transport as his present PA doesn't drive, the bus drivers are getting used to us now, and get the ramp ready it's just a matter of taking a little longer.

    Although diagnosed 6 months ago, have you had the Ataxia symptoms for a long time before ?

    Best wishes

  • Hi Stu, my eyesight was blurred and I was seeing double. Sometimes I felt things were shaking, my neurologist started me on Baclofen tablets and they have really helped. No more shakiness, seeing double. My eyesight seems normal! I've even started reading which I gave up and enjoy immensely. I hope your neurologist helps you. Take care

    Angela

  • Hi Stu, I have had double vision for 2 yrs. At first my eye Dr. said it would go away but it has become permanent and since being diagnosed with spinocerebellar ataxia 6 months ago my neurologist confirmed it is a result of the ataxia. Im wearing prisms in my lenses now which are a great help however i no longer drive because my eyes do move off the prisms at will and it has become too scary. This on top of all the other issues have made it quite challenging. But what is life if not a challenge! Best of luck to you....stay strong and keep positive!

    Anne

  • Hi. I have nystagmus in my eyes (involuntary eye movements) which my neurologist discovered. It can be ataxia related or congenital (born with it). I also have blurred & double vision sometimes mainly when im tired ( eye strain i guess).

    Try & get out even a short distance if possible. Just chatting to neighbours will empower you!

    I can't walk well (a stick isn't enough now). My rollator has proved to be invaluable (4 wheeled walker). It has a seat too, so I can rest when tired. Ask your GP, ataxia UK or even your local council for help & advice as they may be a good point of call initially?😅

  • I have SCA1 and sometimes I have double vision. It definitely an ataxia thing. My Dad had ataxia too and was a sheep farmer and he often complained that he had to shut one eye when he tried to count them!

    My reading eyesight is not good but we have a great optician who I have seen for years and he says that is age. I am very light sensitive though and need sunglasses outside or in the car I HATE headlights XX

  • Hi Stu. I too have blurred and fuzzy vision, it can also be double when I get tired. I have found my eyelid is slow to return to its normal position after I have blinked, this is due to weak muscles I think. When I go to see my local doctor I will ask her opinion. My father (who also had ataxia - even though he tried to deny it) suffered with double vision and had to have a prism put in one of his glass lenses. I have done some research into this horrible thing we have to live with and eye and vision problems seem to go along with everything else. Oh well, look at it this way, one day we may not be able to see these people who accuse us of being drunk, lol. Now that's finding the positive in an otherwise very negative situation. Stay happy, Barbara.

  • LOL like your style !

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