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    Use of PEG

    Has anyone else discovered that you can still enjoy a glass of wine by tube? I always enjoyed a glass with my meal in the evening, so thought I would experiment. Before my PEG meal in the evening I have an aperitif injected into my PEG ( just the one) and I have a little taste on my dead tongue. Surprisingly, it makes me feel almost normal again. No harm in that is there? πŸ·πŸ€·πŸ»β€β™€οΈπŸ˜Š xx

    #2
    Given that you won't taste the wine Lizzie, does that mean it can be a Β£4 bottle of plonk? πŸ˜‰
    ​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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      #3
      Yes Elli, but I imagine it to be a better vintage πŸ‘

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        #4
        Just be careful of the amount. When I did 60mil of Dutch gin I ended up in Hospital with a suspected stroke! 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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          #5
          Lizzie
          I understand you fancy a drink .I often have a small wine if I fancy it but half the time along with absence of appetite now I don’t feel like it or have a few sips and abandon it.

          I don’t think I would put it through my PEG though.Wouldn’t it cause the PEG tube to perish?

          With MND I think like everything else in life you make your own choices while you can.If it gives you pleasure then go for it.I wouldn’t think one drink per day would do more harm that the horrid MND does.
          So cheers.
          Best wishes
          Mary

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            #6
            Thanks for the advice Matthew. I will be very controlled πŸ™‚x

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              #7
              Relax Mary it will not perish the tube. I've put a lamb bhuna down which turned the tube dark brown but didn't affect the tubes integrity. πŸ’‘πŸ‘€πŸ‘ŒπŸ˜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
                matthew55
                You are a funny guy…lamb bhuna and alcohol!Beginning to think many people with MND just do as they please given the things we have to cope with.
                Do you have your PEG tube changed at home every 3 months or so?
                Have a good day…hope you are coping with the carers?
                Best wishes
                Mary x

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                  #9
                  Matthew can I ask you what the point to that was?................you couldnt possibly have tasted it could you?

                  Sue
                  Husband Albert diagnosed PMA Feb 21

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                    #10
                    I haven't had my tube changed since it was fitted. Back when I did it I was with company, and I wanted to fit in. Besides I can taste it when I burp. πŸœπŸ˜‰πŸ‘ŒπŸ˜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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                      #11
                      Meeting on the 17th 9f this month with management of agency and their boss. Live in hope me. πŸ˜‰πŸ˜πŸ˜ŽπŸ€—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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                        #12
                        Originally posted by matthew55 View Post
                        Meeting on the 17th 9f this month with management of agency and their boss. Live in hope me. πŸ˜‰πŸ˜πŸ˜ŽπŸ€—xx
                        ​​​​​​
                        Is that about when they said they'd called and hadnt? πŸ€·πŸΌβ€β™€οΈ
                        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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                          #13
                          That and more.
                          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                            #14
                            Originally posted by matthew55 View Post
                            Just be careful of the amount. When I did 60mil of Dutch gin I ended up in Hospital with a suspected stroke! πŸ₯πŸ˜πŸ€£πŸ˜‚xx
                            Lols!!
                            Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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                              #15
                              The added bonus is that alcohol will clean medical grade silicone πŸ‘πŸ‘πŸ˜πŸ˜˜
                              ​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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