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    Progression

    Oddly enough I have found that my fingers are failing in strict sequence starting with the thumbs on both hands. You have no idea how weird it is, as a right hander, to operate a deodoriser with the second finger of my left hand! 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
    Stephen can just about hold a spoon and can hold a cup just by sticking his thumb through the handle.

    I have to think through the best way of handing him cutlery or cups.

    I need to buy something to tuck into his clothing that's not too obviously a pinny. Funny but using napkins as we should doesn't seem very fashionable.

    πŸ€”
    when i can think of something profound i will update this.

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      #3
      Boasting again, are we mate? 😍😍😍 Are you making any progress getting eye gaze?

      Bizarrely, and sometimes rather conveniently, the only finger of mine to remain straight is the middle finger on my right hand which, as I've no movement in it whatsoever, defiantly stays so.

      😘😘

      ​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
        matthew55 snap. My right hand is probably only 30% usable and my thumb was the first to show major muscle atrophy.

        My left is catching up.
        Diagnosed May 2021 bulbar onset als.

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          #5
          Hubby can't manage utensils at all now and this past week I've bought a few two-handled light-weight cups. Been looking online for a plastic tankard with two handles for when he goes out but so far no success.

          He can lift a cup from his lap but really struggles if it's on the table beside him.

          I feel that a new level of disability is looming and feel rather down-hearted as no hands is a game-changer! But we have adjusted to everything so far so hopefully we'll adjust again.

          I use kitchen towel as a bib, he only eats at home anyway.

          He can still use the remote control so that's the main thing!!
          Husband diagnosed October 2020 with ALS. Started with foot-drop and weak grip/visible wasting in right hand. NIV and powerchair user.

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            #6
            its awful re waiting for the next level/s. I alsoo fear the no hands. i was only diagnosed in may but i had symptoms 2 years previous. I sort of Know that my voice will be gone in the very near future, then my legs and guessing my arms. But i try now to hang onto the good in that my breathing and swallow are very good. re the 2 handled cup i have found a decent online company called complete care or mobility smart.
            Diagnosed May 2021 bulbar onset als.

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              #7
              Just live each day for what it is, and don't think about the future. 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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                #8
                Originally posted by Betty May View Post
                He can lift a cup from his lap but really struggles if it's on the table beside him.
                Would he leave the cup on the table, pop a straw in it and bend down to the cup? 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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                  #9
                  I know it might sound daft but I feel relieved about my progression. I’d hate to think I levelled out and remained in this condition for any length of time. Matthew you’re a bit nutty ( aren’t we all ) but your resilience and outlook are inspiring.
                  Keep it up mate πŸ‘πŸ₯³πŸΊ

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