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The eyes don't have it

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    The eyes don't have it

    When I wake up, yes I do sleep a little, I have to manually open my eyes. After that they work normally. Anyone else get this? πŸ€”πŸ§πŸ˜πŸ˜xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

    #2
    Not me x
    Diagnosed July 2020, ALS bulbar onset.

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      #3
      Hi there,

      I am not really at that stage yet – Just the occasional fasciculations around my eyes
      Warmly


      Andy

      ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 50% left arm and 90% right arm, plus other bits including left shoulder– Campaign contact Winchester and Southampton branch, and trustee of the Association

      "Things turn out the best for people who make the best of the way things turn out"

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        #4
        Yep, me - lying flat, opening my eyelids is impossible; with bed head half raised, I can't open eyelids if it's bright and, if it's dark, it's hit and miss; sitting upright, bingo, eyelid muscles work; if my head is tilted backwards, not a chance...

        As my arms are paralysed, there's nothing I can do until someone comes and sits me up 😍😍
        Last edited by Ellie; 22 September 2021, 13:19.
        ​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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          #5
          If you go down to the woods today you're in for a big suprise, because today's the day the MND livers have their picnic! πŸ˜…πŸ˜πŸ€—πŸ˜xx
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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            #6
            I didn't realise.....

            In the light of that, Ellie, I"m even more in awe of your Eyegaze skills.

            Hugs

            Doug xx

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              #7
              Originally posted by Doug Carpenter View Post
              I"m even more in awe of your Eyegaze skills.
              No need to be 😏 I'm always upright in front of my PC, with eyelids working almost normally!

              My eyes themselves do sometimes 'lock' in a rather unattractive unblinking stare, which can last a minute or so before normality resumes πŸ™„πŸ˜πŸ˜πŸ˜˜

              ​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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                #8
                Every statue I have seen of Aphrodite she has an unblinking stare and no one calls her unattractive! πŸ˜‰πŸ˜€πŸ˜˜πŸ˜xx
                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

                Comment


                  #9
                  Originally posted by Ellie View Post
                  Yep, me - lying flat, opening my eyelids is impossible; with bed head half raised, I can't open eyelids if it's bright and, if it's dark, it's hit and miss; sitting upright, bingo, eyelid muscles work; if my head is tilted backwards, not a chance...

                  As my arms are paralysed, there's nothing I can do until someone comes and sits me up 😍😍
                  Does it not make you feel panicky sometimes Ellie ?

                  I sometimes feel panic stricken on my shower chair because I can't move it and have no phone but I can speak so can't really compare. I am as ever in awe of you xxπŸ˜˜πŸ€—

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                    #10
                    I can't speak for Ellie but my attitude is 'It is what it is' and 'the good lord helps those who help themselves.'
                    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

                    Comment


                      #11
                      Originally posted by Deb View Post
                      Does it not make you feel panicky sometimes Ellie ?
                      Honestly, it's not a panicky type of situation - I know what's happening and why, so panicking doesn't cross my mind.

                      I'm so laid back now about my lack of abilities, I'm horizontal (with eyelids closed 😍😍😍)

                      But, if my PC were to be unresponsive, that's when you'd see me freaking out big time 😲 😘😘
                      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                      ​

                      Comment


                        #12
                        Originally posted by Ellie View Post
                        Yep, me - lying flat, opening my eyelids is impossible; with bed head half raised, I can't open eyelids if it's bright and, if it's dark, it's hit and miss; sitting upright, bingo, eyelid muscles work; if my head is tilted backwards, not a chance...

                        As my arms are paralysed, there's nothing I can do until someone comes and sits me up 😍😍
                        This scares me more than I can say................

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                          #13
                          Well not everyone chooses to stick around for the end of the game. Some of us like to leave early. πŸ˜‰πŸ˜πŸ€—πŸ˜xx
                          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

                          Comment


                            #14
                            Originally posted by aussiegirl View Post
                            This scares me more than I can say................
                            To me, it's just the same as not being able to move my arms in bed. Once upright, my eyelids work - pity I can't say the same about my arms πŸ˜‰

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

                            ​

                            Comment


                              #15


                              Ellie Do you lie flat all the night? It’s the thought of not being able to communicate. You are a great model of acceptance, such a useful thing! X
                              Diagnosed July 2020, ALS bulbar onset.

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