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Douglas in hospice

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    Sorry you're poorly Christine (serendipity in the timing at least)

    I agree that it's best to chat face-to-face with Doug's doctor when you're well again and to ask the questions to which you want answers. In the meantime, fcus on getting yourself back to full health.

    Did you get a chance to watch the short video in my post above?

    Keeping you and Doug in my thoughts.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.


      Chrissie, I’m sorry you have fallen victim to one of the viruses that’s doing the rounds. I hope you soon recover.

      With regard to Douglas, I agree with Ellie but would also suggest talking to his vent nurse for further clarification. Perhaps mention the full face mask to her?

      Trying to keep positive, but not always managing.


        Hello, Ellie & Dina

        Sorry, Ellie, I did have watched the video a couple of times. The mask is not unlike the full face mask he has been trying to use but the one in the video seems to have wider, better designed straps and it looks as if it would sit better on the face. I wanted to ask the vent nurse what she thought because I hoped she might be able to judge the likelihood of it being better than the ones he has tried.

        I don't really understand why they say they can't make him comfortable but he is going to have to wear a mask for most of the day now. Is he supposed to just tolerate being miserable?


          I had the same experience with hospices, they only help people who can talk with cancer ,we had best help at the MS respite centre at Leuchie (its not a servite convent now -its secular)near north berwick ,cancer hospices know nothing,get used to a lot of people knowing nothing and watch !them !they can be lazy ,they take advantage of health and safety to do the bare!!!!minimum .