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  • Gillette
    replied
    Sorry that it's not being straightforward for you, Douglas. I really hope you get sorted quickly and more easily than up to now.

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  • Ellie
    replied
    Hi Douglas,

    Did you find the 4th mask comfortable and are relaxed enough to give it a good try tonight? No sore patches?

    And the air mattress may just be on the wrong settings - if you were OK on the standard bed & mattress, I'd ask to be put back on that if I were you, no point in trying the NIV overnight if you're uncomfortable in bed. One thing at a time !!

    Best of luck.

    Love Ellie.

    Leave a comment:


  • Dis1960
    replied
    Well they tried me with a fourth mask this morning for just over an hour so they want me to try it overnight for 3-5 hours

    Last night they swapped the bed/mattress for a different bed / air mattress - not impresse

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  • Gillette
    replied
    Originally posted by Ellie View Post
    Dina, Lynne and Dis,

    I think it must offer a degree of comfort that you all can chat about, and compare notes on, your clinic experiences?

    The Manchester Amigos

    Love Ellie.

    Ha ha ha! Well, Lynne and I are already planning to go on the rampage in our powered chairs... The Terrible Twosome may have to expand into The Full Throttle Threesome, if Douglas has a powered chair, too!

    Leave a comment:


  • Gillette
    replied
    Originally posted by Dis1960 View Post
    Thanks Dina so far the only thing wrong is how many attempts were made to get blood samples
    Oh, crikey! I hope they won't want blood from me when I go there. It's not unusual for me to have to return another day because they can't get any of mine. I hope everything else is going ok for you.

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  • Terry
    replied
    Hi Dis;

    Taking arterial blood out of the wrist can be hard and painful. Not always but i have mine taken from the ear, they reckon it's not quite so accurate.

    Love Terry

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  • Lynne K
    replied
    Thanks Ellie x

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  • Ellie
    replied
    Dina, Lynne and Dis,

    I think it must offer a degree of comfort that you all can chat about, and compare notes on, your clinic experiences?

    The Manchester Amigos

    Love Ellie.

    Leave a comment:


  • Dis1960
    replied
    Thanks Dina so far the only thing wrong is how many attempts were made to get blood samples

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  • Gillette
    replied
    Originally posted by Dis1960 View Post
    Greetings from sunny Wythenshaw ��
    Good luck!

    My son, who lives in Essex, asked me where Wythenshaw was. I said it's so far south from Radcliffe that it's classed as the south of England!

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  • Dis1960
    replied
    Greetings from sunny Wythenshaw ��

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  • Gillette
    replied
    Originally posted by Dis1960 View Post
    Dina, yes Andrew was in the room and was adept at reading what I was typing whilst incomplete
    There was a geneticist from St Mary’s as well
    Yes, Andrew is very bright. I get the feeling he will be a high flier. I don't know anything about the geneticist as my MND is not genetic.

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  • Dis1960
    replied
    Dina, yes Andrew was in the room and was adept at reading what I was typing whilst incomplete
    There was a geneticist from St Mary’s as well

    Leave a comment:


  • Gillette
    replied
    Hi Lynne,

    I remember you talking about John Ealing last week. Yours was such a different experience from mine. I have been very happy with the way he has treated me. I suppose it's different strokes for different folks.

    Leave a comment:


  • Gillette
    replied
    Hi Dis,

    All the best for your sleep tests.

    When you saw Dr Chaouch, did she have the registrar, Andrew Sneddon, in with her? I think he's a bit of a hot shot (as well as pleasing eye candy!). He and I were talking about various research projects - all neuro but not all MND - including one involving electrical stimulation to the diaphragm.

    If you are having a PEG fitted, were you invited to be on Dr Hamdallah's PEG study? If not, would you be interested?
    Last edited by Gillette; 30 May 2019, 19:14.

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