Search:

Type: Posts; User: Dis1960

Page 1 of 5 1 2 3 4

Search: Search took 0.04 seconds.

  1. Replies
    24
    Views
    1,320

    Now back home,,

    Now back home,,
  2. Replies
    35
    Views
    2,845

    Dina hope you got the warm milk you asked for...

    Dina hope you got the warm milk you asked for yesterday
  3. Replies
    35
    Views
    2,845

    Hope you enjoyed your eggsalad

    Hope you enjoyed your eggsalad
  4. Replies
    35
    Views
    2,845

    You were lucky that musical beds had finished ...

    You were lucky that musical beds had finished for the day

    In the last week I’ve been in bed 14 .11 and now bed 13

    Congratulations on tracking your prey
  5. Thread: Ventilation

    by Dis1960
    Replies
    169
    Views
    15,193

    Nice to meet you today Dina Great wheels too

    Nice to meet you today Dina

    Great wheels too
  6. Thread: Ventilation

    by Dis1960
    Replies
    169
    Views
    15,193

    Hugs to you Dina Hope the social worker gets...

    Hugs to you Dina

    Hope the social worker gets things moving even if they need to provide for day and nighttime care
  7. Replies
    4
    Views
    759

    Hospital/Patient Transport

    So I had a 13:05 appointment at the Salford Royal clinic today

    Patient Transport was booked and we saw the ambulance pull up at 12:15

    First they go next door

    Secondly they had no transit...
  8. Thread: Ventilation

    by Dis1960
    Replies
    169
    Views
    15,193

    Congratulations Dina and hope you recover quickly

    Congratulations Dina and hope you recover quickly
  9. Thread: Duty of care?

    by Dis1960
    Replies
    30
    Views
    3,543

    You also are in the right place if there are any...

    You also are in the right place if there are any cancellations. Good luck and good wishes
  10. Thread: Duty of care?

    by Dis1960
    Replies
    30
    Views
    3,543

    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
  11. Replies
    12
    Views
    1,820

    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
  12. Thread: Ventilation

    by Dis1960
    Replies
    169
    Views
    15,193

    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...
  13. Thread: Ventilation

    by Dis1960
    Replies
    169
    Views
    15,193

    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...
  14. Thread: Ventilation

    by Dis1960
    Replies
    169
    Views
    15,193

    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
  15. Thread: Ventilation

    by Dis1960
    Replies
    169
    Views
    15,193

    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...
  16. Thread: Hello folks

    by Dis1960
    Replies
    13
    Views
    2,395

    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
  17. Replies
    3
    Views
    754

    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
  18. Thread: Good news

    by Dis1960
    Replies
    111
    Views
    8,731

    So happy for you finding a car that suits

    So happy for you finding a car that suits
  19. Replies
    17
    Views
    2,069

    Congratulations :cool:

    Congratulations :cool:
  20. Replies
    214
    Views
    20,171

    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...
  21. Replies
    214
    Views
    20,171

    Crossing fingers home today

    Crossing fingers home today
  22. Thread: Why Me

    by Dis1960
    Replies
    6
    Views
    1,480

    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
    ...
  23. Thread: Heartbroken

    by Dis1960
    Replies
    27
    Views
    4,021

    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
  24. Replies
    214
    Views
    20,171

    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
    ...
  25. Replies
    214
    Views
    20,171

    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
Results 1 to 25 of 120
Page 1 of 5 1 2 3 4