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Thread: Hello I知 Douglas

  1. #51
    Forum Member Gillette's Avatar
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    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; 30th May 2019 at 18:14.
    Dina

    Trying to keep positive, but not always managing.

  2. #52
    Forum Member Gillette's Avatar
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    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.
    Dina

    Trying to keep positive, but not always managing.

  3. #53
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    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

  4. #54
    Forum Member Gillette's Avatar
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    Quote 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.
    Dina

    Trying to keep positive, but not always managing.

  5. #55
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    Greetings from sunny Wythenshaw ��

  6. #56
    Forum Member Gillette's Avatar
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    Quote 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!
    Dina

    Trying to keep positive, but not always managing.

  7. #57
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    Thanks Dina so far the only thing wrong is how many attempts were made to get blood samples

  8. #58
    Forum Member Ellie's Avatar
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    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.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  9. #59
    Forum Member Lynne K's Avatar
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    Thanks Ellie x
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  10. #60
    Forum Member Terry's Avatar
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    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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