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    Starvation

    How long is it if you don't eat before, well you know.. Still PEGless ☹️
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

    #2
    i have no idea. suppose it depends on how big your last meal was. so you still haven't been sorted out? thats terrible.
    when i can think of something profound i will update this.

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      #3
      I can't eat with my mouth anymore and it seems not to be a big issue. But I'm used to it, when I was unemployed I was banned from the local food bank for eating too much. Life? You can keep it. 😀x
      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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        #4
        I can't believe you can't get spares. I'm stuck for words
        when i can think of something profound i will update this.

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          #5
          It's okay really I've known for years that THEY would prefer me dead.😀x
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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            #6
            Oh stop being such a Drama Queen 😂😂

            Did you manage to contact anybody yesterday? If you're still not getting anywhere, maybe email MND Connect to see if they can assist.

            As for death by starvation, it'd probably take weeks, but water is a different matter - mind you, today you can just stand outdoors, hold up the feeding tube and see what you catch.

            Seriously Matthew, get it sorted ASAP anyway possible.

            Love Ellie.
            ​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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              #7
              If nothing else I am trying! 😀x
              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                #8
                You tell him Ellie
                when i can think of something profound i will update this.

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                  #9
                  ☹️😉😀x
                  Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                  Comment


                    #10
                    the only good thing about a RIG instead of a PEG is they send two spare tubes every t 3 months just incase the balloon fails, phew definetly fight to always have a spare. Go get them tiger

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                      #11
                      I know your PEG is “broken” but which part? Or have I missed something?

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                        #12
                        Don't worry I have sorted it. It's the PEG end and whatever way you use it the thing twists. Spares are very easy to fit just hard to find it seems! 😊x
                        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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