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  1. Thread: Feeding by tube

    by ccvsd
    Replies
    11
    Views
    8,231

    try not to worry david. you can try different...

    try not to worry david.

    you can try different things and see what works best.

    we tried gravity feed fortisip first. The syringe fell out the tube and i got covered. Dietician ordered us some...
  2. Thread: Peg seepage

    by ccvsd
    Replies
    8
    Views
    5,506

    just a lttle seepage where it dries at the entry...

    just a lttle seepage where it dries at the entry site is normal although can make feel slightly sore. nurse said they need cleaning off regular

    Cx
  3. Thread: Eyegaze system

    by ccvsd
    Replies
    9
    Views
    5,896

    we have a group specialising in technology to...

    we have a group specialising in technology to help adults communicate. I have a windows tablet operated by my wheelchair joystick on trial at the mo. They are ordering me a similar tablet with a unit...
  4. Thread: Lmao :)

    by ccvsd
    Replies
    22
    Views
    12,657

    my 6 month old nephew came to visit last weekend....

    my 6 month old nephew came to visit last weekend. We took him for a walk and he was definitely eyeing up my wheels!


    caroline
  5. Replies
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    10,531

    majority of cases aren't hereditary and inherited...

    majority of cases aren't hereditary and inherited cases tend to affect a younger age group, commonly around 30 years rather than 50 - 70. Is there anyone else in your family who had mnd?
  6. Replies
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    11,119

    you may be able to access counselling from other...

    you may be able to access counselling from other places if school can't access the resources.

    my palliative care is managed by a local hospice and they are happy to support the whole family. my...
  7. Replies
    12
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    5,612

    lovely news , big congratulations caroline...

    lovely news ,

    big congratulations

    caroline x
  8. Thread: Frightened

    by ccvsd
    Replies
    7
    Views
    5,007

    hello david I started using mine full time a...

    hello david

    I started using mine full time a fortnight ago. I went from an hour a day to 24hr use over 3 days. of course there are disadvantages, straps giving me a headache , speech...
  9. Thread: My Dad has died

    by ccvsd
    Replies
    28
    Views
    14,129

    Panda, I'm so sorry. How wonderful for your...

    Panda, I'm so sorry.

    How wonderful for your dad that he was with his most beloved people right til the end.

    Caroline
    x
  10. Thread: a toast

    by ccvsd
    Replies
    9
    Views
    4,538

    Yay, congratulations! Hope a all went smoothly x

    Yay, congratulations! Hope a all went smoothly
    x
  11. Replies
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    12,099

    Thanks smudge, I will order one for my family x

    Thanks smudge,
    I will order one for my family
    x
  12. Replies
    17
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    7,702

    Can he try a tablet computer? I've got...

    Can he try a tablet computer? I've got predictable software on my I pad. It has a synthesised voice but doesn't sound robotic and has reasonable intonation
  13. Replies
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    7,702

    Don't feel bad. It is such an incredible...

    Don't feel bad. It is such an incredible situation especially when things progress quickly. So many aspects to adjust to. I have found it essential not to dwell on anything though. Think it then move...
  14. Replies
    1,552
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    476,428

    Thanks for the tune CC , did bring a tear to my...

    Thanks for the tune CC , did bring a tear to my eye, having been the back bone of my happy family, they have adjusted well to help me.

    Lovely words berdbrain.

    And Dave, the opportunity to hold...
  15. Replies
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    8,122

    What a shame Gerald. If you are entitled to...

    What a shame Gerald. If you are entitled to 2nights, you should get them. Is this still on the emergency plan or with chc?
  16. Replies
    1,552
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    476,428

    How is Sharyn doing?

    How is Sharyn doing?
  17. Replies
    1,552
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    476,428

    I've worried on and off over the last 7 months...

    I've worried on and off over the last 7 months about various things with mnd. I now can't use my legs or right arm, speech isn't great and I'm using my bipap machine nearly 24hrs a day.

    I realise...
  18. Thread: Pip

    by ccvsd
    Replies
    84
    Views
    64,003

    I applied in October 2013 too. Things were...

    I applied in October 2013 too. Things were progressing at glacial speed until the hospice nurse asked whether a ds1500 had been submitted. It hadn't been, so she sent one off and I got the payment...
  19. Thread: Catheter?

    by ccvsd
    Replies
    6
    Views
    3,943

    I'm unsure. I've been feeling crap regularly so I...

    I'm unsure. I've been feeling crap regularly so I don't feel like going out much. Or getting used to another new thing. Having said that I would like to try going out with the girls.

    Many thanks...
  20. Thread: Catheter?

    by ccvsd
    Replies
    6
    Views
    3,943

    Catheter?

    The hospice nurse has just suggested I try a catheter for convenience as I can't get to the loo without a hoist. She said the district nurse can come out and fit one.

    Does anyone have any...
  21. Thread: A Barn Dance

    by ccvsd
    Replies
    6
    Views
    4,945

    You will probably surprise yourself with how much...

    You will probably surprise yourself with how much you can do being surrounded by family. And like cookewitch says, the memories will go a long way
  22. Replies
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    6,299

    Great news. I really wonder what hospitals are...

    Great news. I really wonder what hospitals are actually for sometimes. Population control?
  23. Thread: Stage 4 als?

    by ccvsd
    Replies
    6
    Views
    4,570

    They are interesting links, many thanks. They...

    They are interesting links, many thanks. They don't explain the stage 4 in it's context, it seems stage 4 indicates use of a bipap, perhaps amongst other symptom severity. I'll keep looking/guessing!
  24. Thread: Stage 4 als?

    by ccvsd
    Replies
    6
    Views
    4,570

    Stage 4 als?

    Hello,

    Does anyone know what the numerical stages are for MND? I've had a little look online but didn't find any definitions. At kings, I was classified as stage 4 since I have a bipap. This made...
  25. Thread: goodbye

    by ccvsd
    Replies
    8
    Views
    3,759

    So sorry for you and your family, such a big loss...

    So sorry for you and your family, such a big loss to you all. I'm sure there are lots of family and friends to love your niece and guide her.

    Much love
    Caroline
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