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  1. Thread: Good news

    by Dis1960
    Replies
    23
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    1,005

    So happy for you finding a car that suits

    So happy for you finding a car that suits
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    850

    Congratulations :cool:

    Congratulations :cool:
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    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...
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    Crossing fingers home today

    Crossing fingers home today
  5. Thread: Why Me

    by Dis1960
    Replies
    6
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    791

    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
    ...
  6. Thread: Heartbroken

    by Dis1960
    Replies
    27
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    2,316

    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
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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
  9. 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...
  11. Thread: MNDA Charity

    by Dis1960
    Replies
    11
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    968

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

    That’s an awesome amount you have raised. Brilliantly done Jerry
  12. 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
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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
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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
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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...
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    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
  18. Replies
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    No CO2 reading last night - the nurse said they...

    No CO2 reading last night - the nurse said they didn’t need to !
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    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...
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    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
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    Co2 6.8 ipap 24 epap 5

    Co2 6.8

    ipap 24
    epap 5
  22. Replies
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    Yes just room air after it痴 passed over the...

    Yes just room air after it痴 passed over the water tank
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    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
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    Still haven’t been told the sleep study results ...

    Still haven’t been told the sleep study results

    The consultant listened to my description and had the mode changed to support

    I told him “
    ventilation is brutal

    When the mask is fitted...
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    Pressure Support vs Pressure Control ?

    Pressure Support vs Pressure Control ?
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