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Losing arm function and feeding et cetera

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    #31
    You made me smile with this too Denise.

    We have some dark humour in our house because laughing really helps, even at some situations we never thought we would find ourselves in.

    I sorry that you have some really hard decisions to make.

    Take Care of yourself too,
    love Debbie x

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      #32
      Originally posted by nunhead_man View Post
      We have just begun a debate here because I am slowly losing the use of my right arm as well as being down to about 50% of function on my left.

      This will eventually mean that I cannot feed myself.

      I presume I need to be preparing for this sooner rather than later as with having move house et cetera and wonder if I should be on the blower to my new neurologist to ask to get on the list for a stomach feeding tube as being fed by the mouth by my wife on a regular basis may well be quite a chore for her and a pain for me.
      Hi Andy, I am slowly losing the use of both arms, I have to use both arms to lift a spork, it is a combination of a spoon, knife and fork.
      My voice and swallowing are fine at the moment, so I would like to keep it that way.
      I have problems cutting up some foods and drink using a straw, although I also have plastic insulated mug with a lid I call my Tommi Tippy mug, as you can appreciate could get knocked over, whilst trying to lift your arms, you end up dragging stuff off tables
      Diagnosed 2nd Jan 2020
      Both arms/shoulders affected, left worse than right.
      Progressive Muscular Atrophy suspected

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        #33
        Good morning Beamer

        Originally posted by Beemer View Post
        Hi Andy, I am slowly losing the use of both arms................
        Thank you for that suggestion – at the moment I can feed myself using my right hand and hold a normal set of tools although I'm not quite sure how long that's going to continue – hence the planning.

        I did have a strap across my left hand with a little pocket in it which would hold one of a normal set of tools but I got out of using that when I started using my right hand which may suggest why my left shoulder has less movement now than it use to have, aside from the muscle damage.

        One of these - https://www.completecareshop.co.uk/e...SABEgKsTPD_BwE
        Warmly


        Andy

        ​Diagnosed 03/2015. One sided limb onset (arm) sporadic ALS/MND. MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

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

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          #34
          Today I changed the working end of my PEG without any assistance. I have given up trying to eat food and the shock when I realized I was leeking was new. I syringe while I have my hands and it is so simple even I can do it. What is so great about life after all? 😉x

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            #35
            Hello Andy reading this got me thinking about my future (als flail limb) and did a bit of digging around , there is also the OBI dining companion looks a bit nicer than the neetereater, and have found cost from US supplier around $7000. There is a uk supplier, https://www.rahanalife.co.uk/dining-companions

            there is also another device called the Bestic on the same page as link above
            no pricing but they do offer trials of the devices
            shaun
            As long as there’s golf and beer I’m happy

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              #36
              Good afternoon Sean,

              I'm afraid we do not have $7000 to drop on something like this.

              I think I may be relying on my partner to feed me while we sort out a gutport

              But we're not there yet – I still need to experiment with palm straps again if I loose some more strength in my hand but do not get too much damage in my shoulder
              Warmly


              Andy

              ​Diagnosed 03/2015. One sided limb onset (arm) sporadic ALS/MND. MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

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

              Comment

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