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Supporting people with MND in making decisions about having a gastrostomy feedingtube

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    #16
    What Covoid has illustrated clearly is the immense divide between the haves and have-nots. We never left the middle ages. 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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      #17
      Yes true Matt, it worked for me and I am wondering how many other people should be 'Nil by PEG'? xx
      Copyright Graham

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        #18
        I really can't see what the objection is to having a PEG fitted. I've had one for over a year and I genuinely forget I have it most times. With aloe gel handy it's painless too.
        Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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          #19
          At the time (2012) I was under pressure from the hospital, "Now or never", to have one but I chose not to have one. I was unaware of how bad my bulbar symptoms would get but I decided if it did get that bad, I would want to die. Perhaps not the correct reasoning but others have said the same.

          I can still enjoy a mini Melton Mowbray pork pie and beaker of tea and it is important to me, however long it takes (up to 1 hour).

          I totally respect the decision to have one but the point is surely it should be known based on type of MND if a PEG is necessary? xx
          Copyright Graham

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            #20
            I asked for a PEG at my initial diagnosis because my daughter had one. Malunitrion is not a way I would choose.
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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              #21
              Having a PEG was one of my better decisions. Takes the pressure off keeping hydrated when I can only sip liquids and nutrition when I eat so slowly and messily. The PEG is easy to maintain and to forget it’s there.

              I did have a bit of a surreal 2 night stay in hospital. These are just a few incidents.

              While I was in a holding bay waiting to go into the operating theatre, in the next bay behind the curtain was a prisoner handcuffed to 2 prison wardens. Thought they were searching for drugs but listening to their conversation, think he had an ulcer. Next day I saw a policewoman in the kitchen. Assumed she was guarding someone.

              I was in a single room as was the chap next door. I heard him shouting for a nurse but they were all at the other end of the ward so no-one else heard him and I had to go off in search of someone and explain by miming having no voice! He had fallen and couldn’t reach his alarm bell so it was then all action stations. Then the next day, the very same thing happened and I had to go and find the nurses again!

              Diagnosed June 2019. Bulbar palsy. Lost voice. Using PEG fitted April 2021 alongside eating normally albeit slowly and messily at times.

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