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Thread: Ventilation

  1. #171
    Forum Member Gillette's Avatar
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    Good(ish) news

    Sort of good news yesterday. After a sudden, marked but sustained deterioration, the doctors and palliative care nurses are putting a plan into place which, it is hoped, will alleviate symptoms. We also have a plan for the following step. I feel happier and more settled, particularly as we are still working towards my discharge home.
    Dina

    Trying to keep positive, but not always managing.

  2. #172
    Forum Member Ellie's Avatar
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    Oct 2012
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    It's always good to have a plan of action Dina - it takes a lot of fear out of the equation and gives you head space to focus on other aspects of life.

    Sounds like you're in good hands with a knowlegable and caring team.

    Big hug to you.

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

  3. #173
    Forum Member Gillette's Avatar
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    Quote Originally Posted by Ellie View Post
    It's always good to have a plan of action Dina - it takes a lot of fear out of the equation and gives you head space to focus on other aspects of life.

    Sounds like you're in good hands with a knowlegable and caring team.

    Big hug to you.

    Love Ellie.
    I certainly am, Ellie. I can't overstate how amazing they have been - I've probably bored everyone silly, going on about it - sorry! Not only that but communication between here, MND clinic and community team is excellent. I feel very fortunate - even though I have this horrid disease.
    Dina

    Trying to keep positive, but not always managing.

  4. #174
    Forum Member Terry's Avatar
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    Quote Originally Posted by Gillette View Post
    I've probably bored everyone silly, going on about it - sorry!
    You never bore us Dina;

    Love Terry

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