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  1. Replies
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    Amen to that, Ellie! I had a meeting with a...

    Amen to that, Ellie!

    I had a meeting with a nurse from the CCG in my home area, about the CHC application. My partner, son and I all felt it went well. There will be an MDT meeting with the CHC...
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    I was having Fortisips during the day via the...

    I was having Fortisips during the day via the tube but was feeling full and uncomfortable all day. I had completely lost my appetite and didn't want to drink. We were trying to stimulate the appetite...
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    Today has been "challenging"... The dietician...

    Today has been "challenging"... The dietician came round today and we are changing the feed that I have. I'm not too bothered as I am likely to be in here a while longer.
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    Hi Mick, Bolus feeding would be a struggle for...

    Hi Mick,

    Bolus feeding would be a struggle for me as my arms and hands are deteriorating quite quickly. Also, my partner has health difficulties that mean he would not be able to help with bolus...
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    Hi Mickmac, I had my first overnight feed last...

    Hi Mickmac,

    I had my first overnight feed last night and felt the effects within 12 hours of the start of feeding.
  6. Thread: 10k

    by Gillette
    Replies
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    1,132

    Oh, wow! What an amazing turnout, Lynne!

    Oh, wow! What an amazing turnout, Lynne!
  7. Thread: 10k

    by Gillette
    Replies
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    1,132

    Hi Lynne Good luck and thank you to them for...

    Hi Lynne

    Good luck and thank you to them for raising money for and awareness of MND.
  8. Replies
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    Oh, Chrissie, I'm sorry Doug is back in...

    Oh, Chrissie, I'm sorry Doug is back in Wythenshawe: it's so disappointing for both of you.

    I am also on the Ventilation Unit at the moment. Following on from Ellie's comment about discussing...
  9. Thread: Ventilation

    by Gillette
    Replies
    137
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    11,779

    Thanks for the tips, Ellie. The water has been...

    Thanks for the tips, Ellie.

    The water has been reduced to 100ml at a time. As for the Fortisips, I have lost more weight than they'd like, since I came in, not helped by having pretty much gone...
  10. Thread: Ventilation

    by Gillette
    Replies
    137
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    11,779

    Hi Debbie, Thank you. I'm doing ok thanks and...

    Hi Debbie,

    Thank you. I'm doing ok thanks and the team on the ward are great.
  11. Replies
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    Thanks, Ellie.

    Thanks, Ellie.
  12. Thread: Ventilation

    by Gillette
    Replies
    137
    Views
    11,779

    I've been having 200ml of water, morning and...

    I've been having 200ml of water, morning and evening, together with a Fortisip with fibre in the morning and a Fortisip 2cal in the evening using a syringe plunger.

    We are tweaking the regimen,...
  13. Thread: Hello

    by Gillette
    Replies
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    576

    Hi Chris, Welcome to the forum but sorry that...

    Hi Chris,

    Welcome to the forum but sorry that you have the diagnosis.

    There is a huge amount of experience and knowledge on the forum - as you've probably guessed - so feel free to ask if you...
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    Do you know if it is possible to have it renewed...

    Do you know if it is possible to have it renewed without sending in the current badge?
  15. Thread: Ventilation

    by Gillette
    Replies
    137
    Views
    11,779

    Hi Ellie, Actually I am finding the breakfast...

    Hi Ellie,

    Actually I am finding the breakfast bolus is making me feel overfull and nauseous. They are reducing the volume of water to see if I can tolerate it better.
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    Hi Sarah and welcome to the forum no-one wants to...

    Hi Sarah and welcome to the forum no-one wants to need.

    I bought a four-wheeled walker when my walking was deteriorating and only managed to use it a couple of times due to my rate of...
  17. Thread: Ventilation

    by Gillette
    Replies
    137
    Views
    11,779

    Hi Kayleigh and Sheila, I started using the...

    Hi Kayleigh and Sheila,

    I started using the PEG for nutrition 2 or 3 days after it was fitted. At the moment I am having bolus feeds to supplement what I am eating and also to make sure that I am...
  18. Thread: Ventilation

    by Gillette
    Replies
    137
    Views
    11,779

    Hi everyone, Had a meeting with the social...

    Hi everyone,

    Had a meeting with the social worker today, which turned into a mini discharge planning meeting. The result was that it was agreed that an application would be made by the hospital...
  19. Thread: Ventilation

    by Gillette
    Replies
    137
    Views
    11,779

    Thank you all for your support: it has certainly...

    Thank you all for your support: it has certainly helped me to get through today. I wasn't going to mention the dark thoughts but then realised I would be lying by omission, and I don't like lying.
    ...
  20. Thread: Ventilation

    by Gillette
    Replies
    137
    Views
    11,779

    Hi Everyone, I thought I would post an update...

    Hi Everyone,

    I thought I would post an update about what is happening with me.

    I am still in Wythenshawe Hospital and it's looking as though I will be here for at least a couple more weeks....
  21. Thread: Football

    by Gillette
    Replies
    28
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    1,703

    Hi Kayleigh, I'm very excited at the prospect...

    Hi Kayleigh,

    I'm very excited at the prospect of finally being recognised as a fully-fledged member of the El Dorado fan club. **jumps up & down squealing delightedly.

    I must also admit to...
  22. Thread: Football

    by Gillette
    Replies
    28
    Views
    1,703

    Hi Kayleigh, One of the nurses told me a few...

    Hi Kayleigh,

    One of the nurses told me a few minutes ago about the return of Supermarket Sweep - she was definitely more excited about it than I could even pretend to be. However we did get into...
  23. Thread: Football

    by Gillette
    Replies
    28
    Views
    1,703

    Hi CC, I did try watching American Football...

    Hi CC,

    I did try watching American Football once but ended up in a coma which it took me 11 1/2 months to come out of! Ha ha ha!
  24. Thread: Football

    by Gillette
    Replies
    28
    Views
    1,703

    Oh, Kayleigh, thank you so much for reminding me...

    Oh, Kayleigh, thank you so much for reminding me about it. I was all set to watch it but then came across a box of pins that were just the right size to poke in my eyeballs. I'm afraid it was no...
  25. Thread: Football

    by Gillette
    Replies
    28
    Views
    1,703

    I was lying in my hospital bed, wondering how I...

    I was lying in my hospital bed, wondering how I would manage to fall asleep and then i read this thread. Perfection! Football, cricket and celebrity quiz shows! I'm already snoring sweetly. Thanks,...
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