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    #16
    Hey ho... Maybe a PEG isn't required. Get a gene test.
    Copyright Graham

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      #17
      Hi all,

      I just wanted to give my perspective - might help?. My husband has been diagnosed 5 years. He was adamant he did not want a PEG and had this documented in his ADRT.

      He could still eat and drink and take medication orally, but eating was tiring and therefore not always enjoyable and choking become more frequent and distressing. Medication whether tablet or liquid form was becoming difficult too.

      I respected his decision on whether to have/refuse a PEG or any other treatment for that matter, but I just wanted to make sure he had all the facts and made an informed decision - so managed to persuade him to go along to an appointment with our respiratory consultant and MND team. I was also conscious there is a window of opportunity the have a PEG and didn't want him to change his mind and it be too late.

      anyway he decided based on pros and cons he would have it done. That was in 5 months ago now, he says himself the actual PEG insertion was easy, took 20 minutes - it was the workup that took the time (i.e. checking his breathing was okay to have the tube inserted).

      It has taken some getting used to and he still eats and drinks orally, but we view the PEG as a back up plan, it has massively helped with fluid intake, which has helped with other things like constipation, hydration etc and he is in charge and can decide when he wants to use it or not.

      Know everyone is different and has the right to choose based on their own wishes, but for him and us it was worthwhile doing.

      Hope that helps

      Dx

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        #18
        Thanks for sharing that, Dingaling.

        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
          I am slowly moving away from eating 'normally' to pure PEG days. Eating is a trial that I am happy not to have to attend. x

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            #20
            Hi,

            My dad was supposed to have a peg late march but covid stopped that. by the time they got round to it they took him down and it was too late for a peg so they decided on a Rig. He was then discharged and back in a few days later.

            The Rig helped massively, as he was then at the point of avoiding food as he just got too scared of choking.

            Unfortunately for dad it was all just too little too late and he only had the Rig 3 weeks before passing away this week.

            Please consider it whilst you can recover x

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