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    Right arm is now dead weight and I can no longer get myself out of bed without mechanical help. Still swallowing and left arm becoming weak. How long is a piece of string? 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
    Hard Matthew, keep soldiering on ! We have to keep saying goodbye to different parts of ourselves, but we're still all here for you! xx
    Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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      #3
      MND sucks...

      Originally posted by matthew55 View Post
      I can no longer get myself out of bed without mechanical help.
      Do tell, what "mechanical help" gets you out of bed - again my imagination is transported to Wallace and Gromit's house πŸ˜‰πŸ˜

      Be careful with the dead weight of an arm: both of my arms are dead weight and, when dressing me, if one arm is left down by my side and the other arm is on my lap, I'll gradually be pulled over by the weight of the dangling arm like the Leaning Tower of Pisa πŸ₯΄ - I kid you not 😏

      Originally posted by matthew55 View Post
      How long is a piece of string?
      I hope it's elastic you have, not string.

      I hope your week gets better by the arrival of your new tech - is it due on Friday? 😘😘
      ​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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        #4
        I use my profile bed to raise me to a sitting position, swing my legs and bingo. Friday is indeed the great day. πŸŽ‰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


          #5
          Originally posted by matthew55 View Post
          Friday is indeed the great day.
          A mere 2 sleeps πŸ‘πŸ‘

          And don't forget you were told if this set up is too faffy for your hand function, they can give you eye gaze or other access methods. xx
          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

          ​

          Comment


            #6
            You always seem to find a solution matthew55 πŸ€—πŸ˜‰

            Yeah MND is crap🀬
            Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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