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Thread: Nippy 4

  1. #11
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Thanks Andy;

    They are sending me out a mask, don't know what one. Your other one could be quite good being shorter,

    I am quite rough am very tired, finding it hard to ware the mask.

    Been outside this afternoon for over a hour, so nice here.

    Love Terry

  2. #12
    Forum Member Terry's Avatar
    Join Date
    May 2012
    sorry to be so negative but i have had a extremely fatigued sinse November.

    my eyes, brain,memory area not working right. i struggle to eat, drink, eat breath without feeling bloated or sick. i have back and other pains. guess i want to say buy very soon. sorry for you all being left with the chimps advice.

    love TERRY

  3. #13
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    No need to apologise, mate.

    If your body has had enough, the bravest thing to do is to let go - harsh though that will sound to many who haven't lived this very difficult life for years... You and you alone will know what reserves you have.

    I hope you have good palliative nursing care available to you, either at home, in the hospice, or both, and know when to ask for help and support.

    Wishing you much support and love over the coming weeks.

    Big hug,

    Love Chimp.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  4. #14
    Forum Member
    Join Date
    May 2018
    Oh Terry,

    So very sorry to read this but please, please dont apologise. I really appreciate, as I am sure many others do, the sound advice, support, laughs and fun you give to our forum family. I know you have been welcoming new members for many years.

    Thinking of you Terry and sending big hugs and love,
    Love Debbie x

  5. #15
    Forum Member Barry52's Avatar
    Join Date
    Mar 2012
    Newark on Trent
    Oh my dear friend Terry.

    Reading this makes me very sad but I know how much we struggle with this disease. I can only wish that you are comfortable and without pain. You are an inspiration to members of this forum and your humour, advice and compassion are invaluable.

    Iím going to do this even if it kills me!

  6. #16
    Forum Member
    Join Date
    Jan 2011
    So sad to read this Terry. I hope you had a comfortable night. Sending you warmest wishes xx

  7. #17
    Forum Member nunhead_man's Avatar
    Join Date
    Jul 2017
    Good morning Terry

    I am also very sad to read this.

    But if you have decided it is your time to go then so be it.

    I hope you have good contacts with your local palliative care team even in this time of isolation and challenges in communication and that they can make you comfortable wherever you want to be

    And I hope if there are things you wish to say to people you are able to say those in some way and much love from this forum to send you on your way


    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

    "Things turn out the best for people who make the best of the way things turn out"

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