Regarding ataxia and memory : Does any one her... - Ataxia UK

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Regarding ataxia and memory

Junie1984
Junie1984

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.

17 Replies
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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

Junie1984
Junie1984
in reply to kjtibby

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

Hidden
Hidden

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 :)

Junie1984
Junie1984
in reply to Hidden

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.

Junie1984
Junie1984
in reply to TELEEN

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

scrumdidlly
scrumdidlly
in reply to TELEEN

SCA2 is also what my family has and both my mom and grandma have gone through dementia and I’ve read that it happens in about 25% of cases. If I find the article I’ll post it.

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.

I have EA - still waiting on genetic test results - and so does my Dad. Memory has been a huge problem for me. I can’t remember words, and find it hard to speak. I get lost halfway through a sentence and forget what I was going to say. I can’t remember what I did yesterday, or 5 minutes ago, but months or years ago is fine. If it’s important I write it in my phone. My phone calendar gets used for everything, as does my “notes” app. I am only 31 so it isn’t an age thing.

The cerebellum is responsible for many things apart from just motor coordination. Different areas of the cerebellum are involved in what is known as Cerebellar Cognitive Affective Disorder - which includes short term memory issues as a symptom. EA effects the ion channels of the cerebellum more generally, rather than just specifically in the location which controls motor coordination, so there is often a crossover of CCAD symptoms along with the symptom of ataxia (ataxia is a symptom not a disease, which is why so many underlying causes from stroke to genetics can lead to ataxia).

My 40 years old son who has a progressive ataxia for 10 years, his memory has been diminishing day by day past 3 years.

I think its all connected to his ataxia

My memory is not good.

I repeat the same thing to people, I have to write things down and my long term memory is very bad.

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