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Ataxia Support

Why am I confused

I have inherited ataxia ca diagnosed prof Wood london clinic 2008
My memory short term is inconsistent
Ataxia to blame?
Regards
Barney

Hi Bernard (Barney :) ),

I am not aware of ataxia being to blame for short or long term memory problems and have no links or pointers that may help you find a better answer.

I can tell you though that after years of testing for various medical issues, my father has just been told he has (cerebelar) ataxia and that I have to question my neurologist as to if my own ataxia is cerebelar - dad and me are under the same neurological team.

Why is any of that relevant? The thing is, my father does have intermittant short and long term memory issues and many people have commented that my own memory seems to be in question too.

I cannot in all honesty say that memory is or could be affected as part of our ataxia(s) but your question certainly gave me cause to think about the possible link.

I hope someone on these forums can give you a better answer that is more informative and precise.

Hi Bernard, For me I notice eating the right vitimins and minerals that I need, getting enough sleep, exercising with focused movements on a regular basis, pretty much staying on a schedual of healthly focused thoughts etc, helps me think more clear. When I first gave up gluten it seemed to help alittle bit. When I gave up all flour and refined sugar and started eating regular amounts and times after 3 day's my brain became more clear. Even colors seemed brighter to me. Then when I started focused movements (exercise) It must have been much more blood flow that has helped. I read that just exercising regularly helps the brain 80% more than the body. It said working the brain (exercising it) is like exercising a muscle. It's not a muscle but it can be worked and made bigger!

That's why (they said) that doing puzzels and games helps the mind. So I work on it daily along with my body moving.

I heard someone say yesterday something that made alot of since to me. They said the water parts only when you stick your foot in it. Do it by faith not how you feel at the moment about it. Anotherwords sometimes I just don't want to exercise etc, but I know that I only start getting resultse after I just start. It's a rippling effect. How could it not! :0)

I still tend to blame some things on having ataxia, some days more than other's, but then I realise I'm going with how I feel not mythinking and just knowing what can work for me because it has before.

This ataxia is one challenge after another and as soone as I seem to master one there is another to work on, but I really feel if I follow everything that I mentioned I can get on top of my game much more and it's easier to deal with the ataxia for me. I hope something I said can help you out or make you think of something that can help you! :0)

1 Like

I was diagnosed about 8 years ago with sporadic cerebellar ataxia (non-hereditary/unknown cause). I suffer from "brain fog" and short term memory problems. I blame some of it on my age (58)...,ha! I also think there is a connection with my ataxia, due having to concentrate so much on every movement I make. I do think it's important to eat healthy, exercise (whether standing and holding onto something, sitting, or on the floor) and get enough rest, as that seems to help me think more clearly. Just my theory... ;o)

Lo

<.</p> Hi Michael, Do you happen to know some bladder issues..like not being able to empty bladder even though I pass urine.
Joseph

Bernard,

It is frustrating when your short term memory fails. I have Gluten Ataxia and was diagnosed Jan 2009. One of my most pronounced symptoms was short term memory loss.

I had testing and was found to have severe short term memory loss. I was retested about 2 months ago and I've made significant improvement. I now fall into the "normal" range for my age.

I've been 100% gluten free since my diagnosis almost 4 years ago. Except for some accidental cross-contamination incidences.

Gluten can seriously affect the brain. It may or may not be what is causing your memory loss. It certainly is worth looking in to. There are quite a few people here who live with Gluten Ataxia.

You could try going off of all gluten for a few weeks and see if it helps.

Dr Marios Hadjivassiliou in the UK is the world expect on Gluten Ataxia.

http://www.acnr.co.uk/pdfs/volume2issue6/v2i6reviewart2.pdf

I hope you get some answers quickly!

Interesting article, Julie,

I was diagnosed with gluten intolerance three years ago. My main symptoms were brain fog, poor memory .... in fact, I was being treated for early stages of Alzheimer's Disease. There is no doubt in my mind that the two go together.

Now, after being gluten free for three years, I am still stumbling, tripping, choking on air (as my loved ones call it), occasional fumbling speech and have assumed that the long exposed to gluten has caused a mild case of Ataxia -- my own diagnosis as I have never pursued these symptoms with a doctor (it was hard enough getting the gluten issue pinned down).

When I was first diagnosed with gluten issues (along with dairy and egg allergies), my doctor told me that gluten really effects the brain more than any other organ -- even the digestive system. With that knowledge, I figured my other systems were a gluten caused ataxia.

I don't know if this information will help, but thought I would share in case it does.

Best,

Sandy



Sandy Dell said:

Interesting article, Julie,

I was diagnosed with gluten intolerance three years ago. My main symptoms were brain fog, poor memory .... in fact, I was being treated for early stages of Alzheimer's Disease. There is no doubt in my mind that the two go together.

Now, after being gluten free for three years, I am still stumbling, tripping, choking on air (as my loved ones call it), occasional fumbling speech and have assumed that the long exposed to gluten has caused a mild case of Ataxia -- my own diagnosis as I have never pursued these symptoms with a doctor (it was hard enough getting the gluten issue pinned down).

When I was first diagnosed with gluten issues (along with dairy and egg allergies), my doctor told me that gluten really effects the brain more than any other organ -- even the digestive system. With that knowledge, I figured my other systems were a gluten caused ataxia.

I don't know if this information will help, but thought I would share in case it does.

Best,

Sandy

Hi Bernard, my husband has C/A inherited and has also been diagnosed with dementia as his short term memory is bad.

They haven't said it is the C/A causing it just non specific. He is 79 though and it could be anything causing it. I did read an article sometime ago which stated that 37% of people suffering from C/A get dementia. Sorry to be so negative but things do not get any better.

Think it could be Barney, but as i am new to all this with my daughter, i am suprised that some people lack real info on their illness and indead their diagnosis. In Glasgow, Cassie had a definite diagnosis within 3 months. She has a genetics doctor who will talk to her through the different stages of her illness, and she has a liaison nurse who she can call anytime and is getting physio provided. I don,t think people are getting the care and info they deserve. Rant over but it truly would make you weep

Punk

426-ROTTEN6b3fjtz.jpg (55.2 KB)
1 Like

Hi Punk, Sounds as though illness care is wonderful in your country! Wish it was like that everywhere! ;o)

Hello Rose my daughter got the care i would expect and deserves. Everyone deserves the same purely on a human level. My son Gary had 3rd stage cancer and the docs in Scotland got him through it. So the care in Scotland has been great but you deserve the same as Gary and Cassie, we all do. If you or anyone is not reseiving the care they deserve for this disease i just hope there is someone you can contact to fight your corner because not everyone feels capable to do so. Hope you are doing as well as you can Rose and if your not drop me a message and have a moan

Punk

rose said:

Hi Punk, Sounds as though illness care is wonderful in your country! Wish it was like that everywhere! ;o)

425-ROTTEN6b3fjtz.jpg (55.2 KB)

Thanks for your kind words Punk! I was diagnosed about 8 years ago with sporadic cerebellar ataxia (non-hereditary/unknown cause). I had physical therapy for a while, but only within the past couple years. I had to ask for it, and would have started sooner, if my neurologist would have suggested it. I decided to have genetic testing about 6 months ago. Once again, I had to ask for it (it was negative, hence "sporadic"). At least my initial diagnosis was correct! You have to be "pro-active" in your care, at least I do! I only see my neurologist annually, as all he can do is check the progression of my ataxia and see if it's turning into anything else (MSA-multiple system atrophy or Parkinson's disease'). Of course, I ask a lot of questions at that time, and my neuro, answers them the best he can. Once again, I'm happy your daughter is getting the care she deserves! ;o)

i would think that these memory deficits could be connected with your ataxia, they could somehow belong to your ataxia (when it is an inheridated SCA please look first which "number" it is, e.g. SCA5 etc.. and then look on the general informations for it available in the internet, so on "We Move" or ask here in the forum.)

Such deficits could be typically occuring to many patients affected by your special inheridated ataxia or only to some of them, or even none.

Everything can be learned, the deficits can be overcome by learning. My short time memory never has been good, but now it is even worse: I always had to write down the essentials, have a calender, notice books etc. but now i have started to try to write protocols from what i did and what i plan to do, - without success to complete my notices on a day. Mostly i have to stop with them after some hours, because to much has to be done and too much is happening. i have got problems with planning; structurizing my work...My symptoms are coming perhaps not from an ataxia but from an encephalopathy.. Whatever. Exercise is helpful and necessary (like Jeannie and others use to say - and they are right).. Which exercise? For me it is characerized with the words: "Thousand times falling down, and thousand times standing up" - and some minimum technique and knowledge how to proceed. For me this comes from my own experience as well as from reading, mainly spiritual literature with advices how to proceed in spiritual life..("Monk, stay in your cell! = helpful to fight confusion)

When you mention inconsistency, my dictionnary says: instableness, variability and similar. Do you mean some sort of confusion?

Confusion can happen to me when i am in stress; or when i don´t have enough place to put my things down on the table in a way that i can find them again easily; when i have to take care of precious things. Then i get nervous, and because of this nervousness i got somehow confused and put the things on places where i could not find them later (or forgot where they were, then lost them or had to realize that they had been stolen!). Now i am on the stage confessing that i need to wear my portemonnaie in a bumbag like

http://www.amazon.com/HM-Running-Travel-Security-Passport/dp/B006WI...

and the keys of my appartment on a belt around my neck. Planning to buy a hipbag like

http://www.amazon.de/MFH-Security-G%C3%BCrtelbefestigung-schwarz-30...

for to be able to transport more things safely. When going into a shop and buying things, i must take my purse out from my bumbag.Afterwards i am always attempted to put my purse into my shopping trolley (which serves to me as a sort of walking aid actually), and not into my bumbag, which would need more time, for not to incommodate the other costumers coming after me; for to go away from the checkout counter soon. But i almost every time had problems to find it again in the next shop.Now, i have always to put it bag into my bumbag, whatever other people might tattle/slender over me.. With my bag in my bumbag i feel safe. I think this could be a way to avoid confusion happening in shops and not finding purses. And the same method or a similar could be applied at home. I have already made more order than i have had some months before. Order in my files; order in my wardrobes. Planning to write on each drawer what s in it. My former mother in law did the same with most things she stored, - and she was not disabled. She was living in perfect order, and that s was i am learning actually, motivated by my disabilities....

Kind regards, hope this has met some of our expectancies...

Akita

Better: "Now i have always to put it back into my bumbag whatever other people might tattle/slender over me..With my purse in my bumbag if feel safe.".. Sorry for the mistakes..

Rose
I agree with your sentiments entirely.