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  1. Thread: Duty of care?

    by Dis1960
    Replies
    21
    Views
    759

    Hugs to Dina both for the terrible treatment by...

    Hugs to Dina both for the terrible treatment by the social worker and your read:ittance tů Wythenshawe

    Could your GP help with finding carers or chc forms
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    984

    Again places like Dunham Massey, Tatton Park,...

    Again places like Dunham Massey, Tatton Park, Lyme Park, Heaton Park, Hollingworth Lake may be ok
    Lowry Centre and Trafford Centre might work as well
  3. Thread: Ventilation

    by Dis1960
    Replies
    90
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    6,656

    Good luck, Lin the nurse offered to train the...

    Good luck, Lin the nurse offered to train the carers but they passed on the offer


    Reasonably well until last week..first the electrics kept tripping then Christine got pancreatitis due to...
  4. Thread: Ventilation

    by Dis1960
    Replies
    90
    Views
    6,656

    Dina, it sounds like you are doing exceptionally...

    Dina, it sounds like you are doing exceptionally with the masks.

    You will have a clinic appointment at Wythenshawe about 4 weeks after you leave and a nurse will come out to check CO2 ( yes the...
  5. Thread: Ventilation

    by Dis1960
    Replies
    90
    Views
    6,656

    You may have a nose only mask as well for the PEG...

    You may have a nose only mask as well for the PEG trials/procedure

    Also remember when they ask coffee or tea you can ask for cold milk or water flavoured with cordial

    Good luck
  6. Thread: Ventilation

    by Dis1960
    Replies
    90
    Views
    6,656

    Congratulations on the granddaughter Dina The...

    Congratulations on the granddaughter Dina

    The physios who deal with the ventilator and the cough assist machines at Wythenshawe are all good. So are most of the nursing staff.
    You will have a...
  7. Thread: Hello folks

    by Dis1960
    Replies
    13
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    1,498

    Welcome Iain Thereís a lot of good advice in...

    Welcome Iain

    Thereís a lot of good advice in the above replies and the forum generally but any questions and someone may help

    It may be obvious but falls should be avoided
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    The Guardian 22nd July 2019 biome and MND

    https://www.theguardian.com/society/2019/jul/22/motor-neurone-disease-researchers-find-link-to-microbes-in-gut
  9. Thread: Good news

    by Dis1960
    Replies
    111
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    7,007

    So happy for you finding a car that suits

    So happy for you finding a car that suits
  10. Replies
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    1,756

    Congratulations :cool:

    Congratulations :cool:
  11. Replies
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    16,205

    Well that was an interesting day- the plan was to...

    Well that was an interesting day- the plan was to leave at 5pm

    That was changed to 3pm so patient transport transferred me by stretcher at 3 got to the house 330 no carers because they hadn’t been...
  12. Replies
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    Crossing fingers home today

    Crossing fingers home today
  13. Thread: Why Me

    by Dis1960
    Replies
    6
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    1,226

    Have you gone for the full genome route to see if...

    Have you gone for the full genome route to see if your family tree is a cause?

    You will want to know whether it’s sporadic or familiar MND and then whether it’s ALS or PLS or another variant
    ...
  14. Thread: Heartbroken

    by Dis1960
    Replies
    27
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    3,411

    So sorry for your loss but please don’t blame...

    So sorry for your loss but please don’t blame yourself for anything

    Good thoughts to you at this time
  15. Replies
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    Well after that meeting the doctor was more...

    Well after that meeting the doctor was more amenable to tweaking the nippy
    So last night the pressure was reduced to 20 and the initial ramp to full pressure was set to 10 minutes CO2 was6.0
    ...
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    Thanks Dina that meeting was just days after our...

    Thanks Dina that meeting was just days after our 28th anniversary so hearing that reaching the 30th anniversary is unlikely was harsh and saying they couldn’t do anything further was brutal
  17. Replies
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    The battle to get home starts again on Monday....

    The battle to get home starts again on Monday. The OT+social worker want 4x visits per day of 2 people each time to operate hoist
    Bed - commode- chair
    Chair-commode- chair
    Chair-commode- chair...
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    The main problem with the meeting was the...

    The main problem with the meeting was the insistence that a feeding tube would not extend life whilst ignoring lack of a feeding tube increases the risk of dying earlier from an aspirational...
  19. Thread: MNDA Charity

    by Dis1960
    Replies
    12
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    1,874

    That’s an awesome amount you have raised....

    That’s an awesome amount you have raised. Brilliantly done Jerry
  20. Replies
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    I suppose I should have expected that MDT meeting...

    I suppose I should have expected that MDT meeting but I didn’t

    Apparently I’m a difficult case and nothing they can do gets the CO2 down to a safe level

    So much so that the risks of PEG and of...
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    Well the assessment bed offer has been withdrawn...

    Well the assessment bed offer has been withdrawn as I’m too complex for them...they actually objected to the cough assist machine
  22. Replies
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    Back up to 6.5 On the positive side my...

    Back up to 6.5

    On the positive side my Birthday fundraiser on Facebook has raised £190 for MNDA
  23. Replies
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    Well tweaking continues pressure down to 22,...

    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
  24. Replies
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    So 21st 5.1 22nd no reading 23rd no reading ...

    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...
  25. Replies
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    16,205

    They want to use the same profile for both masks...

    They want to use the same profile for both masks

    24 into the nose mask was not bearable 22 or 23 were ok but 16 was better still
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