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Thread: Hello I知 Douglas

  1. #31
    MFisc
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    Hello everyone !
    My name is Michael and im from North Carolina.
    Keep strong !
    Best wishes !

  2. #32
    Forum Member Terry's Avatar
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    Hi Michael and welcome to the forum,

    What type of Mnd do you have and how is it affecting you?

    North Carolina sounds a lovely place.

    Best wishes, Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  3. #33
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    Now I’ve got an appointment on 27th March at cardiorespiratory for a sleep study test.

    There should have been a leaflet too but that is missing

    Changed to 10th April. Still no leaflet but we asked about posting the test back and that is only done if the test was requested by a GP. There is no way my wife can get to Salford Royal and back in rush hour traffic and still get into work so returning the test may be problematic

    Now changed to 22nd May
    Last edited by Dis1960; 13th April 2019 at 07:40.

  4. #34
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    Clinic today

    Weight in December 90.1kgh
    Weight today 68.7kg

  5. #35
    Forum Member Barry52's Avatar
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    Hi Dis,

    That’s a significant weight loss over 6 months. Did the doctor recommend diet supplements?

    Best wishes,
    Barry
    I知 going to do this even if it kills me!

  6. #36
    Forum Member Ellie's Avatar
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    Did someone you saw come up with a plan to stop and reverse your weight loss Douglas?

    You don't need me to tell you that losing nearly a quarter of your body weight isn't good

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

  7. #37
    Forum Member nunhead_man's Avatar
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    Hi Dis

    Quote Originally Posted by Dis1960 View Post
    Now I致e got an appointment on 27th March at cardiorespiratory for a sleep study test...... we asked about posting the test back and that is only done if the test was requested by a GP.
    I have been involved in this game as my neurologist wanted a baseline for my breathing, so they could notice when it changed. I had 2 tests and both involved getting the unit back to the testing people at Kings in my case after the test.

    I am lucky as my wife works there and she was able to drop the unit off on her way into her own unit, which set me wondering as to whether you might have a neighbour who works in or near the hospital?

    Warmly

    Andy
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

  8. #38
    Forum Member Gillette's Avatar
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    Quote Originally Posted by Dis1960 View Post
    Clinic today

    Weight in December 90.1kgh
    Weight today 68.7kg
    Hi Dis, I was at the clinic in Salford this afternoon. When they weighed me it seemed that I had put on 18 kg! My body is telling a different story.

    Did you know that they have a Meet and Greet system at Salford Royal? They have a group of volunteers, one of whom will meet you at your car or taxi and then they will use one of the hospital wheelchairs to take you to your appointment. When you have finished at the clinic, the staff ring through for one of the volunteers to collect you.
    Dina


    Trying to keep positive, but not always managing.

  9. #39
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    Indeed Barrie and Ellie but all initially said was a different dietician would be in touch.
    They were more about genetic counselling as I was told I have the C9orf72 mutation

    The other problem is an increase in CO2 level in my blood so the idea is to be an inpatient to try the mask mechanism and if that works a PEG could follow

  10. #40
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    Hello Dina, we must have been in the same Area 3 seating area

    We got the patient/hospital transport In/out but only got there after 2 and left after 6 ( a lovely MNDA Volunteer Kathleen? sat with us )

    Salford / Wythenshaw were discussed at great length and I now understand more what Graham meant about Salford Royal

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