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  • Barry52
    replied
    Hi Vicky,

    Click her name on one of her posts and it will show private message.

    Barry

    Leave a comment:


  • Vicky86
    replied
    Can someone tell me how to send a direct message to Nettie please? Trying on compose a message but when I put her user name doesn’t work

    Leave a comment:


  • Vicky86
    replied
    Hi nettie sorry I can’t work out to message you

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  • Vicky86
    replied
    Hi nettie will send u a message now thanks x

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  • Sheila
    replied
    Hi janette,
    Yes, it took a while to get use to the peg. Should of had it done earlier really, as I lost quite a Bit of weight. Which is proving hard to put back on.
    Love Sheila

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  • Nettie
    replied
    Originally posted by Ellie View Post
    Welcome to the Forum, Janette.

    I see Terry has lectured you already about eating safely, so I won't have to

    I still eat what I can safely enjoy and use my feeding tube for my main nutrition and almost all my fluid intake.

    Just because you have a tube doesn't stop you from doing a "Pick n Mix" Woolies special on how you get your calories and fluids!!

    Has your tube site fully healed now and is behaving?

    Take care.

    Love Ellie.
    Hi Ellie, I’ve adapted my way of eating quite well, just get bad days now and again, yeah my tube fully healed now it took its time though I’m not sure if it’s because they discovered hiatus hernia while they were doing the procedure love janette

    Leave a comment:


  • Ellie
    replied
    Welcome to the Forum, Janette.

    I see Terry has lectured you already about eating safely, so I won't have to

    I still eat what I can safely enjoy and use my feeding tube for my main nutrition and almost all my fluid intake.

    Just because you have a tube doesn't stop you from doing a "Pick n Mix" Woolies special on how you get your calories and fluids!!

    Has your tube site fully healed now and is behaving?

    Take care.

    Love Ellie.

    Leave a comment:


  • Nettie
    replied
    Thanks for the advice Terry love janette x

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  • Terry
    replied
    Hi Nettie,

    Bitting your lips and tongue is one of the pleasures of Mnd, especially when sneezing. I do manage to close my teeth before a sneeze sometimes which can work.

    If you getting tired when eating you are more likely to make mistakes.

    See your dietitian to get some back up and have smaller portions and enjoy your food. Sometimes having smaller amounts of hot food is less dounting and then maybe have seconds that are reheated.

    Love Terry

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  • Nettie
    replied
    Hi Sheila, had mine in Dec took about 5/6 weeks to feel ok after was awful how was yours? Sustaining weight at moment so not too worried but it’s there now waiting lol x

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  • Nettie
    replied
    Hi Terry, it is so exhausting to eat sometimes but enjoy taste, but on days like today when I bite my tongue when sneezing it’s so painful will have a word with dietician about supplements thanks love Janette

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  • Sheila
    replied
    Hi nettie and welcome. I had a peg fifitted in December, but I am using it twice a day. I have trouble eating.
    Sheila x

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  • Terry
    replied
    Hi Janette,

    I have had a PEG for about five years and have have found it useful for hydration when rough. Keep eating but maybe have easier to eat meals and smaller ones more often.

    Don't tire yourself out eating, you can still eat some of the things you like and supplement using the peg.

    Love Terry

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  • Nettie
    replied
    Originally posted by Terry View Post
    Hi Nettie and welcome to the forum,

    Can you tell us a little bit about your involvement with Mnd. No need if you don't want to but it's always nice to know a little bit about your situation.

    Love Terry
    Hi Terry, I was diagnosed in September Bulbar onset, I use Niv at night, just recently started with with foot drop also bad hip, I struggle eating had a Peg fitted in December not had to use it as yet as I don’t like to give in too easily. Thanks Janette x

    Leave a comment:


  • Terry
    replied
    Hi Nettie and welcome to the forum,

    Can you tell us a little bit about your involvement with Mnd. No need if you don't want to but it's always nice to know a little bit about your situation.

    Love Terry

    Leave a comment:

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