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

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  • John D
    replied
    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!

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  • matthew55
    replied
    I asked for a PEG at my initial diagnosis because my daughter had one. Malunitrion is not a way I would choose.

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  • Graham
    replied
    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

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  • matthew55
    replied
    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.

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  • Graham
    replied
    Yes true Matt, it worked for me and I am wondering how many other people should be 'Nil by PEG'? xx

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  • matthew55
    replied
    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

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  • Graham
    replied
    Clearly mouth is better than PEG for so many reasons but I got lucky when I decided not to PEG. Don't get me wrong, I have to be exceptionally careful and slow when eating and food gets stuck in my throat quite regularly that reappears at night. Not easy and dangerous but who says MND is easy?

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  • matthew55
    replied
    To qualify that statement Graham it is the right choice for you. I have to say I have been wrong and am actually putting on weight with my PEG. Today I am back at 11stones. πŸ‘πŸ˜πŸ€—πŸ»xx

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  • Graham
    replied
    After consideration, I am not doing the research but I want to point out my thoughts.

    The NHS/MNDA did another study recently where the type of MND was supposed to influence decisions in our care. It is stomach churning that nothing ever seems to happen with the research. An utter waste of time and money.

    So for real value: -

    I decided not to have a PEG - and was the correct decision. Gene DCTN1 buggered. Diagnosis PPMS=>PLS=>ALS(UMN).

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  • matthew55
    replied
    Guilty your honour πŸ˜‰πŸ˜πŸ˜˜πŸ˜xx

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  • Ellie
    replied
    Originally posted by matthew55 View Post
    You watch too much American stuff.
    That's all your fault.

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  • matthew55
    replied
    You watch too much American stuff. We say No comment. πŸ˜‰πŸ€—πŸ˜˜πŸ˜xx

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  • Ellie
    replied
    I'll plead the 5th πŸ˜‰πŸ˜πŸ˜πŸ˜˜

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  • matthew55
    replied
    But in a good way or bad? πŸ˜‰πŸ€—πŸ˜πŸ˜xx

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  • Ellie
    replied
    Originally posted by matthew55 View Post
    ... more people might remember me when I'm gone.
    Oh Matthew, you'll be remembered for sure πŸ˜πŸ˜πŸ˜πŸ€—πŸ€—πŸ˜˜πŸ˜˜

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