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    #16
    How do you remove the tube cap has anyone used plastic pliers if on own?

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      #17
      Make sure that when you've taken it off you put it back gently. Have you tried holding it under hot water?
      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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        #18

        Hiya Matthew.

        I saw you wrote this in another Thread:

        Originally posted by matthew55 View Post
        I have had three district nurses who had no idea what kind of PEG I have. I think it's about time I had it changed but I'm only the patient.
        As far as I know, you have a standard feeding tube and they don't have to be replaced often (sometimes never) It's the balloon retained tubes and buttons which need to be changed regularly.

        How's life?

        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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          #19
          Well I'm getting older. That's about it πŸ˜„x
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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            #20
            And wiser πŸ™ƒ
            ​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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              #21
              Maybe but what I have planned for tomorrow isn't very wise. πŸ˜‰x
              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                #22
                You can't leave it there Matthew. We need to know what you've got planned.. especially if its unwise, πŸ€”

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                  #23
                  Wisdom is subjective. Do it, enjoy, regret nothing.

                  We don't have the luxury of ignoring our mortality - that can be liberating though, can't it, in a who the hell cares way 😜

                  Will we find out about it?
                  ​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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                    #24
                    Well I'm a red blood man and in no condition to start dating again so I have decided to call in a professional. I really hope we are all adults here πŸ˜„x
                    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                      #25
                      Oh good for you mate - as I said, enjoy!!
                      ​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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                        #26
                        Good heavens. Didn't get unapproved either
                        when i can think of something profound i will update this.

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                          #27
                          Well I did ask ! I say go for it too and enjoy !

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                            #28
                            Ok who's gonna ask him tomorrow how it went last night? Suppose all the gnomes will be blindfolded πŸ˜πŸ˜„πŸ˜Š
                            when i can think of something profound i will update this.

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                              #29
                              You've just giving me ideas πŸ˜‰x
                              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                                #30
                                I haven't been this excited about anything since I was a nipper πŸ˜‰x
                                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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