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  1. Thread: Ventilation

    by Gillette
    Replies
    141
    Views
    11,957

    Hi Terry, I am on overnight feeding but no...

    Hi Terry,

    I am on overnight feeding but no longer with the extra fibre feed. During the day I'm having water flushed through several times and then eating and drinking what I want - which is very...
  2. Replies
    7
    Views
    247

    Hi Lynne, I can completely understand you...

    Hi Lynne,

    I can completely understand you wanting to keep your diagnosis private. I wonder if your husband feels that he needs people to know? When a husband/wife/partner cares for someone with...
  3. Replies
    10
    Views
    326

    Hi Barry, Thank you for sharing your...

    Hi Barry,

    Thank you for sharing your experience so far with Jet2.

    I would like to have a holiday but don't know if I feel brave enough to attempt one.
  4. Exciting times! I hope you are, indeed, taken...

    Exciting times! I hope you are, indeed, taken onto the trial, John.
  5. Replies
    24
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    1,609

    Thanks, Lynne.

    Thanks, Lynne.
  6. Replies
    24
    Views
    1,609

    Thanks, Shrew. Mine was a fast-track application....

    Thanks, Shrew. Mine was a fast-track application. The funding was not approved (but not rejected) because it was felt that, due to complexity of my needs, it would take longer than 48 hours to set up...
  7. Replies
    24
    Views
    1,609

    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...
  8. Replies
    24
    Views
    1,609

    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...
  9. Replies
    24
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    1,609

    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.
  10. Replies
    24
    Views
    1,609

    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...
  11. Replies
    24
    Views
    1,609

    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.
  12. Thread: 10k

    by Gillette
    Replies
    20
    Views
    1,234

    Oh, wow! What an amazing turnout, Lynne!

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

    by Gillette
    Replies
    20
    Views
    1,234

    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.
  14. Replies
    212
    Views
    18,580

    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...
  15. Thread: Ventilation

    by Gillette
    Replies
    141
    Views
    11,957

    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...
  16. Thread: Ventilation

    by Gillette
    Replies
    141
    Views
    11,957

    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.
  17. Replies
    5
    Views
    539

    Thanks, Ellie.

    Thanks, Ellie.
  18. Thread: Ventilation

    by Gillette
    Replies
    141
    Views
    11,957

    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,...
  19. Thread: Hello

    by Gillette
    Replies
    10
    Views
    836

    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...
  20. Replies
    5
    Views
    539

    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?
  21. Thread: Ventilation

    by Gillette
    Replies
    141
    Views
    11,957

    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.
  22. Replies
    15
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    1,623

    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...
  23. Thread: Ventilation

    by Gillette
    Replies
    141
    Views
    11,957

    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...
  24. Thread: Ventilation

    by Gillette
    Replies
    141
    Views
    11,957

    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...
  25. Thread: Ventilation

    by Gillette
    Replies
    141
    Views
    11,957

    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.
    ...
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