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Edinburgh cognitive and behavioural ALS screen

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    #16
    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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      #17
      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 😏😟😘😘
      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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        #18
        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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          #19
          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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            #20
            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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              #21
              xx

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                #22
                Thanks
                Ellie
                Forum Member
                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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                  #23
                  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
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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                    #24
                    Rosemary6NT
                    Forum Member
                    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
                    Diagnosed July 2020, ALS bulbar onset.

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                      #25
                      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
                      Forum Member
                      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
                      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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                        #26
                        Heather R
                        Forum Member
                        Heather R and
                        Ellie
                        Forum Member
                        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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                          #27
                          Heather R
                          Forum Member
                          Heather R Biobank sounds interesting. I see recruitment was between 2006 and 2010.
                          Rosemary6NT
                          Forum Member
                          Last edited by Rosemary6NT; 2 December 2021, 10:31.

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