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Thread: First visit

  1. #21
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Location
    Dublin
    Posts
    2,964
    Dina, I just want to thank you for sharing the above - very honest and open of you.

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

  2. #22
    Forum Member Gillette's Avatar
    Join Date
    Mar 2019
    Location
    Greater Manchester
    Posts
    168
    Hi Ellie,

    Thank you. I hope it will go some way to reassuring others.
    Dina


    Trying to keep positive, but not always managing.

  3. #23
    Forum Member
    Join Date
    Jul 2018
    Posts
    24
    Hi Polly
    There is a huge amount of support and care for people on this forum. I wish you and your husband well. I completely empathise with those who feel the process just takes over their life. I didn't have a peg 7 years ago and still don't need one now. The important thing it is personal choice, knowing those things are there if, as and when someone needs and most importantly wants them. It's about feeling you are in control, and good medical professionals respect that. And there is always hope, I am nearly at 8 years now and still living life
    Best wishes
    Olivia

  4. #24
    Forum Member
    Join Date
    Feb 2019
    Posts
    117
    Hi Olivia H,
    Your post was very interesting and positive. I am so pleased you are doing well.
    Best wishes
    Sheila.

  5. #25
    Forum Member
    Join Date
    Jul 2018
    Posts
    286
    hi my Husband had a rig feeding tube in January. he currently eats and drinks normally and hasnt lost weight. I just put 50
    ml of water in each morning.

  6. #26
    Forum Member Kayleigh's Avatar
    Join Date
    Nov 2018
    Location
    England
    Posts
    732
    For anyone who would like to find out about feeding tubes, the following information might be useful:-

    MNDA Factsheet 7B Tube Feeding:-

    http://https://dbsy278t81889.cloudfront.net/app/uploads/2019/03/13120457/07B-Tube-feeding.pdf

    'My tube' website (information and videos):-

    http://http://mytube.mymnd.org.uk

    Best wishes
    Kayleigh
    Last edited by Kayleigh; 15th May 2019 at 22:36.
    We are a fabulous forum family - the precious bond we all share is powerful and strong!

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