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Hello I’m Douglas
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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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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.
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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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Originally posted by Ellie View PostDina, 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!
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Originally posted by Dis1960 View PostThanks Dina so far the only thing wrong is how many attempts were made to get blood samples
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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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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.
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Thanks Dina so far the only thing wrong is how many attempts were made to get blood samples
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Originally posted by Dis1960 View PostDina, 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
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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
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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.
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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; 30 May 2019, 19:14.
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