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    Note of caution

    If you are thinking of ending early by simply not using your Peg be aware that after a couple of days certain levels will drop dramatically. Thereafter any blood test, for any reason, will result in you being dragged to hospital where the majority ethos is 'do no harm', so even if you have a DNR they will try and keep you alive. 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

    #2
    One of the reasons I wouldn't have one!

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      #3
      Sadly that would trigger the low levels sooner.
      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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        #4
        An advance decision (living will) let's people know treatments
        ​​​​​​you will refuse. Probably why we should all make sure we have this written down signed and witnessed.
        On my 'to do' list πŸ˜‡πŸ˜‰

        https://www.nhs.uk/conditions/end-of...use-treatment/
        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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          #5
          Originally posted by matthew55 View Post
          If you are thinking of ending early by simply not using your Peg be aware that after a couple of days certain levels will drop dramatically. Thereafter any blood test, for any reason, will result in you being dragged to hospital
          Notwithstanding the involvement of a Palliative Care Team, I don't really understand why anyone choosing to stop feeding would A) choose to be in receipt of medical care; B) care that "certain levels will drop dramatically"; C) give consent to having bloods drawn or D) give consent to "being dragged to hospital".

          ​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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            #6
            Yes mame 😁😘😍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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              #7
              Ellie I absolutely get that and that's exactly where we will be as Albert is still saying he doesn't want a peg fitted
              Husband Albert diagnosed PMA Feb 21

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                #8
                Originally posted by Suefromwakey View Post
                Ellie I absolutely get that and that's exactly where we will be as Albert is still saying he doesn't want a peg fitted
                If Albert's swallow deteriorates to such an extent that he can no longer swallow, that is where the Palliative Care Team come in Sue and maybe prior to that, an SLT - he won't be dragged to hospital. xx
                ​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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