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Edinburgh cognitive and behavioural ALS screen

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  • Rosemary6NT
    replied
    Heather R Biobank sounds interesting. I see recruitment was between 2006 and 2010.
    Last edited by Rosemary6NT; 2 December 2021, 09:31.

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  • Rosemary6NT
    replied
    Heather R and Ellie good point. I only asked for one once I thought I detected changes. I wanted to find out if they were real changes or just stress-related. Now I'm not much the wiser but getting a number doesn't really change anything . It's just another thing to get depressed about . Que sera.

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  • Ellie
    replied
    Originally posted by Heather R View Post
    I think I had that test from the psychologist, and the results were all quite good. But she said the limitation is that you don't know what the score would have been before mnd, therefore it's difficult to see any deterioration,
    That's a good point Heather R I was tested very soon after diagnosis for a baseline score and have been tested regularly since, so any changes can be noted. xx

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  • Heather R
    replied
    Rosemary6NT I think I had that test from the psychologist, and the results were all quite good. But she said the limitation is that you don't know what the score would have been before mnd, therefore it's difficult to see any deterioration, You could ask for a repeat testing after a period of time if you continue to struggle? I recently did a cognitive test for Biobank, and one question really floored me that I'm sure I would have not found a problem before. x

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  • Ellie
    replied
    It's easier to handle once we know it's part of MND and we're not losing the plot (well, not fully anyway 😉)

    I'm not too badly affected and can usually lower my emotions by reciting certain song lyrics in my head 😏 but, if anyone needs meds to dampen down emotions, please ask your GP. xx

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  • Rosemary6NT
    replied
    Thanks Ellie . Yes I did read about EL when I was self-diagnosing on Google . It reared it's ugly head when my partner and I were talking with the MND nurse about "the end" and my while my partner was crying I couldn't stop laughing. Mercifully it eventually changed to crying and the nurse reassured us that it was the MND effect. But I never had an EL test. I find my patience can be lacking sometimes which is not good and I swear a lot more

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  • Zante
    replied
    xx

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  • Rosemary6NT
    replied
    Originally posted by Zante View Post
    Am hoping it doesn't deteriorate any more. Otherwise not concentrating is going to be costly leading up to Xmas with duplicate buying!! Xx
    Definitely with you there! xx

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  • Zante
    replied
    I was writing same time as Ellie and have just read that post which is very interesting and informative as always thanks Ellie.xx

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  • Zante
    replied
    I am the same Rosemary definitely more outwardly emotional but not extremes.... I find I am more open than used to be and cry easily. Can't say the same for laughter however! The concentration and planning is off and multi tasking is what is the most noticeable for me and like you pointed out its with quite basic tasks. The tests and scores you mentioned I don't have any experience or knowledge of. I was only moved/referred from my general neurology consultant to the neuromuscular clinic mnd specialist in October ao am only just beginning with appointments again and repeated emg etc. He said he is still working out if pls but its a lengthy process. I did mention these cognitive changes to the initial consultant who did say this is seen with pls . Am hoping it doesn't deteriorate any more. Otherwise not concentrating is going to be costly leading up to Xmas with duplicate buying!! Xx

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  • Ellie
    replied
    Originally posted by Rosemary6NT View Post
    I am more outwardly emotional than I used to be, crying more and laughing insanely at childish things.
    That sounds like Emotional Lability (aka pseudobulbar affect) Rosemary, and the vast majority of us have it to some degree. I should hope somebody explained the likelihood of you developing the condition, though the term may not have made much sense to you at the time and that you either filled out a questionnaire or answered questions on your emotions. When I had my ECAS tests, I always had an EL questionnaire and my husband also completed one about my emotions.

    Emotional Lability (EL) is basically inappropiate emotional responses which can also be exaggerated, so, laughing loudly at sad things or in stressful situations (my forte), and/or crying loudly, either of which can then turn into the opposite emotion. Laughter turns to sobs, sobs turn to laughter.

    If the EL is bad or affecting your life, antidepressants can help (not just Prozac [Fluoxetine], but other drugs too)

    The 2-fingered greeting is a slightly different form of disinhibtion, but both modified behavior and EL, as well as cognitive and executive function changes are all linked to deterioration of the frontal lobe area of the brain.

    As if losing the ability to walk and talk weren't enough 😏😟😘😘

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  • Rosemary6NT
    replied
    Originally posted by matthew55 View Post
    I found myself crying for no reason then I discovered prozac.
    That's useful . Unfortunately I'm already habituated to prozac but it probably still helps

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  • matthew55
    replied
    I found myself crying for no reason then I discovered prozac.

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  • Rosemary6NT
    replied
    Zante we must have some brain cells working though as we are aware of our condition . I feel there is also a degree of disinhibition as I am more outwardly emotional than I used to be, crying more and laughing insanely at childish things. Plus I have greeted friends with a two fingered salute which I never would have normally (ok maybe would have if inebriated).

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  • Rosemary6NT
    replied
    Originally posted by Zante View Post
    And sorry Rosemary I am conscious this is of no help to you on your thread whatsoever!
    Not at all Zante it is very helpful to hear of other peoples experiences, thanks for contributing. I have read that MND can also affect non-motor neurones in the central nervous system. I completely relate to what you say about multi tasking. It was never my strong point but I find it much worse now. I feel I am struggling with decision making and planning courses of action as well as concentration. My score for "executive" function was 40/48 with a total of 88/100 for the ALS specific section and overall 120/136. I was told that was good but it doesn't feel that good to me . The final note was "So whilst there were some minor issues showing there was nothing hugely problematic". So there is definitely some loss of ability. The brain fog I referred to was more a physical feeling of not being quite there or present or "muzzy".

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