Search:

Type: Posts; User: Dis1960

Page 1 of 5 1 2 3 4

Search: Search took 0.06 seconds.

  1. Thread: Hello folks

    by Dis1960
    Replies
    13
    Views
    460

    Welcome Iain There痴 a lot of good advice in...

    Welcome Iain

    There痴 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
  2. Replies
    3
    Views
    141

    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
  3. Thread: Good news

    by Dis1960
    Replies
    35
    Views
    1,554

    So happy for you finding a car that suits

    So happy for you finding a car that suits
  4. Replies
    17
    Views
    964

    Congratulations :cool:

    Congratulations :cool:
  5. Replies
    207
    Views
    14,755

    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...
  6. Replies
    207
    Views
    14,755

    Crossing fingers home today

    Crossing fingers home today
  7. Thread: Why Me

    by Dis1960
    Replies
    6
    Views
    825

    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
    ...
  8. Thread: Heartbroken

    by Dis1960
    Replies
    27
    Views
    2,463

    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
  9. Replies
    207
    Views
    14,755

    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
    ...
  10. Replies
    207
    Views
    14,755

    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
  11. Replies
    207
    Views
    14,755

    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...
  12. Replies
    207
    Views
    14,755

    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...
  13. Thread: MNDA Charity

    by Dis1960
    Replies
    12
    Views
    1,114

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

    That’s an awesome amount you have raised. Brilliantly done Jerry
  14. Replies
    207
    Views
    14,755

    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...
  15. Replies
    207
    Views
    14,755

    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
  16. Replies
    207
    Views
    14,755

    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
  17. Replies
    207
    Views
    14,755

    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
  18. Replies
    207
    Views
    14,755

    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...
  19. Replies
    207
    Views
    14,755

    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
  20. Replies
    207
    Views
    14,755

    No CO2 reading last night - the nurse said they...

    No CO2 reading last night - the nurse said they didn’t need to !
  21. Replies
    207
    Views
    14,755

    Well I hope it’s not a glitch but last nights CO2...

    Well I hope it’s not a glitch but last nights CO2 was 5.1

    Apparently the initial setting after the Jaffa was 26

    The nose mask for the PEG trial started at 12/5 and the last hour was spent at...
  22. Replies
    207
    Views
    14,755

    I asked Dr Bentley about this - it was originally...

    I asked Dr Bentley about this - it was originally set lower but due to the swallowing problems ( see Jaffa Cake ) it was upped. He did say it might be reduced in time if the target range is overshot
  23. Replies
    207
    Views
    14,755

    Co2 6.8 ipap 24 epap 5

    Co2 6.8

    ipap 24
    epap 5
  24. Replies
    207
    Views
    14,755

    Yes just room air after it痴 passed over the...

    Yes just room air after it痴 passed over the water tank
  25. Replies
    207
    Views
    14,755

    Well I’m sleeping much better but of course the...

    Well I’m sleeping much better but of course the CO2 is reset and last night 6.9

    PEG is back on the agenda but maybe not on this hospital stay
Results 1 to 25 of 105
Page 1 of 5 1 2 3 4