Query on possible Cognitive regression SCA 19/ 22 - Ataxia UK

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Query on possible Cognitive regression SCA 19/ 22

Jenandbeth profile image
10 Replies

So, yesterday Beth's carer said she was noticing Beth is repeating the same thing more often. We have noticed this too. Beth does have a learning disability as part of her SCA and has always got a bit stuck on an idea, but I wondered if anyone else has noticed, experienced or has feedback on this kind of degeneration where repetition ( memory loss? slower processing? ) becomes more pronounced? 🤔

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Jenandbeth profile image
Jenandbeth
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10 Replies
Leils profile image
Leils

Is she on any B12 treatment?

Jenandbeth profile image
Jenandbeth

No, she's just been put on iron and Vitamin D and has to get full bloods taken to check for any other deficiencies in fortnight.

Jenandbeth profile image
Jenandbeth in reply to Jenandbeth

But she does have a defo diagnosis of SCA 19/22 which I don't think is responsive to B12?!?

paul456 profile image
paul456

Good morning Jen/Beth how’s my good friends.

This is a difficult one. I do know that having SCRs can affect your concentration levels, I don’t think it’s the memory itself’ an example of what happens to me is I can switch on the TV for the weather forecast and at the end of the forecast I have no idea what it is because my little pea brain has drifted off to another planet so this could be put down as loss of memory and I suppose it is.

So maybe if you do something but while doing it you have zero concentration level you might repeat it????

Hope this makes some sense.

Am fairly qualified in this field having done a first aid course in 1979 Lol.

You take care.

Who Cares Wins.

Jenandbeth profile image
Jenandbeth

LOL thanks Paul 😊☺😄 love that you've not lost your sense of humour, it defo gets us thro!

wobblybee profile image
wobblybee

🤔 Have you heard of Cerebellar Cognitive Affective Syndrome..it may be linked.

It’s acknowledged that Cognition and Emotion can be affected with a diagnosis of ataxia.

Slower processing is something many of us experience, I know I do, and I’m not diagnosed with a specific type.

Jenandbeth profile image
Jenandbeth in reply to wobblybee

I haven't heard that condition but I did know of link to cognition and emotions because its VERY OBVIOUS with Miss B, bless her 😉.Thanks for reply and I'll have a Google, hope all ok your end x

Jenandbeth profile image
Jenandbeth in reply to Jenandbeth

Oh Wobblybee I've just googled the scale ... yep to well pretty much all of that 🤣 thanks x

I have 'Cerebellar Cognitive Affective Syndrome' associated with my Cerebellar Ataxia diagnosis. I do have emotional problems where I can be either overly excited or become excessively sad. Repetitive speech may or may not be a symptom of CCAS (I don't know). I wouldn't say its one of my own symptoms. However, I can be quite obsessive about sticking to routines. In some cases I can find it very hard to adjust to changes therefore having to repeat things I do on a daily or regular basis. I also have in the past regressed into a childhood state of distress. Hope this may be useful to you.

Jenandbeth profile image
Jenandbeth

Thanks so much for taking the time to share and be so honest. Take care

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