Regarding ataxia and memory

Does any one her with ataxia suffer from forgetfulness or memory loss? My mum and big sister have both been confirmed to have episodic ataxia type 2 and both of them seem to be getting a bit forgetful. My sister asked the genetic doctor at her recent appointment however he said as far as he was aware he doesn't think it's connected but he is not 100% sure as it's all a bit new to him. Any advice or information would be highly appreciated. Thank you.

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  • I wouldn't say i have memory loss,it's more like i forget all what people have told me. I tend to find myself saying soething like, 'i thinkhe/she said something like' or 'i can't remember exactly what was said but it was something like...' I try to write down the important things and ensure im not alone if its soething important

  • thank you for your reply. i will be giving it a try, no harm in trying, think it might help. thanks again.

  • Hi Junie 1984 :) I have Progressive Episodic Ataxia (type unknown) My memory is " wretched " at times. I'm 47 and often have to say to people "I know you've probably told me before, but, I unfortunately can't remember" . I'm certainly no expert or Dr. My memory is better now than in my early 40's, I believe it's part of the "Episodic" nature. As kjtibby pointed out you "need plan B". I too find it helpful to write anything important down. Don't get too worried, everyone will be alright :)

  • thank you, much appreciated, think i will go with the post it note idea and see if that helps. thanks everyone.

  • Hi i have ataxia sca2 iv'e had it for 17 yrs,i have been told it does not affect memory,i am now coming up 68 and have general age related memory.My bro who also has this condition feels that his memory has always been affected even when he was fist diagnosed 25yrs ago so for me it's uncertain and i still don't know.

  • thank you for your reply it at least gives me a better understanding x

  • Hi Louise

    I am in a wheelchair now, but from my own experience, I would say that it would be a good thing because aside from the support, it makes other people aware that there is an issue. I used to find it useful and my daughter is considering it too, although she has always been extremely reluctant - she has inherited ataxia from me.

    Hope this helps x

  • Hi

    My memory has slowed down but my consultant says that it is still ok. x

  • I don't buy the memory loss thing--it might be an aging or other thing-- but who knows? Apparently no one. Feel good. N

  • My memory is not a good as you use to be, but I'm also 62 years young. I think ataxia effects my memory because I have to be so focused when walking with my cane (so I don't fall) or trying to do anything dexterity-wise. I feel as though my brain has to work over-time just to help me function with my ataxia. I also think some of it's related to my age, although I don't know for certain. Just my opinion/theory! I've had ataxia about 20 years now, so this is my "normal". My best to you..., ;o)

  • I look at it this way: you can't concentrate on everything at once!

  • My theory " we hear" but our brains don't always register and certainly concerntration comes in to it. I also think age plays a main part.

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