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Thread: Hello I知 Douglas

  1. #161
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    So 21st 5.1
    22nd no reading
    23rd no reading
    24th 6.1
    25th 6.5

    They are talking about moving me to a local authority assessment bed as there’s a waiting list for PEG
    The doctor is finding out about where on that list I am and has stated the pressure is high due to bulbar problems

  2. #162
    Forum Member Terry's Avatar
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    Thanks for the update Dis,

    I was hoping that co would be improving. Hope your OK in there.

    Love Terry

  3. #163
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    Well tweaking continues pressure down to 22, slightly different rise time and 6.1 ...more pertinently it was a much more pleasant night on the reduced pressure

    Oh and the PEG test went well
    Last edited by Dis1960; 26th June 2019 at 10:16.

  4. #164
    Forum Member Terry's Avatar
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    Hi Dis;

    PLeased something has gone well, any news on the date of the opp.

    Love Terry

  5. #165
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    Back up to 6.5

    On the positive side my Birthday fundraiser on Facebook has raised 」190 for MNDA

  6. #166
    Forum Member Terry's Avatar
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    Hi Dis;

    Well done raising monies whilst in hospital, you put most of us to shame.

    Love Terry

  7. #167
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    Well the assessment bed offer has been withdrawn as I’m too complex for them...they actually objected to the cough assist machine

  8. #168
    Forum Member Ellie's Avatar
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    Oh Douglas, you could do with some good news, couldn't you??!!

    What about a hospice bed (for symptom management)?

    Big hug.

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

  9. #169
    Forum Member Gillette's Avatar
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    Hi Douglas,

    What a rotten time you're having. I really hope things turn around for you soon.

    Well done on the money donated to your birthday fundraiser.
    Dina


    Trying to keep positive, but not always managing.

  10. #170
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    Well done Douglas on your birthday fundraiser. Such a good thing to do.

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