Announcement

Collapse
No announcement yet.

The eyes don't have it

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    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. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

    Comment


      #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 90% left arm and 90% right arm, plus other bits including both shoulders and also some breathing issues – 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"

      Comment


        #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, 14:19.
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

        ​

        Comment


          #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

          Comment


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

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

            Hugs

            Doug xx
            Diagnosed April 2017

            Comment


              #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.

              ​

              Comment


                #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€—

                  Comment


                    #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................

                        Comment


                          #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. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

                              Comment

                              Working...
                              X