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  1. Thread: Milestone!

    by Gillette
    Replies
    1
    Views
    74

    Hi Andy, Sorry to hear about the deterioration...

    Hi Andy,

    Sorry to hear about the deterioration of your right hand. Legs are not so bad because you can use a wheelchair to get around but hands are a whole other matter.

    Sending electronic hugs.
  2. Replies
    2
    Views
    74

    Hi Steve and welcome to the forum. I tried to...

    Hi Steve and welcome to the forum.

    I tried to have a look on Kik but the wifi in the hospital is not quite up to downloading an app. I hope you are successful in setting up the group.
  3. Thread: Ventilation

    by Gillette
    Replies
    150
    Views
    12,467

    Yes, Lynne, I think we are very lucky with the...

    Yes, Lynne, I think we are very lucky with the NHS services locally.
  4. Thread: Ventilation

    by Gillette
    Replies
    150
    Views
    12,467

    Hi Hayls, Oh, crikey, I don't think I'm any...

    Hi Hayls,

    Oh, crikey, I don't think I'm any different to anyone else. I'm just trying to cope with everything this horrid disease throws at me. Actually, if I wasn't restricted by MND, I'd be able...
  5. Thread: Ventilation

    by Gillette
    Replies
    150
    Views
    12,467

    Hi Sheila, Yes, I'm being treated very well,...

    Hi Sheila,

    Yes, I'm being treated very well, thank you. It is a lovely ward. It is a specialist ventilation ward with excellent staff : patient ratios, which mean that staff have a little more...
  6. Thread: Ventilation

    by Gillette
    Replies
    150
    Views
    12,467

    Hi Sheila, No, I don't think they were...

    Hi Sheila,

    No, I don't think they were actually force feeding me. I don't remember them forcing me in any way. I have been involved and had choice every step of the way.

    Things seem to be...
  7. Thread: Ventilation

    by Gillette
    Replies
    150
    Views
    12,467

    Hi Kayleigh, Yes, the staff are keeping a good...

    Hi Kayleigh,

    Yes, the staff are keeping a good eye on all of it.

    As for the loss of appetite, it began before the PEG was fitted. It happens periodically and, in fact, was one of the key...
  8. Thread: Ventilation

    by Gillette
    Replies
    150
    Views
    12,467

    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...
  9. Replies
    9
    Views
    375

    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...
  10. Replies
    10
    Views
    394

    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.
  11. Exciting times! I hope you are, indeed, taken...

    Exciting times! I hope you are, indeed, taken onto the trial, John.
  12. Replies
    24
    Views
    1,671

    Thanks, Lynne.

    Thanks, Lynne.
  13. Replies
    24
    Views
    1,671

    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...
  14. Replies
    24
    Views
    1,671

    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...
  15. Replies
    24
    Views
    1,671

    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...
  16. Replies
    24
    Views
    1,671

    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.
  17. Replies
    24
    Views
    1,671

    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...
  18. Replies
    24
    Views
    1,671

    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.
  19. Thread: 10k

    by Gillette
    Replies
    20
    Views
    1,325

    Oh, wow! What an amazing turnout, Lynne!

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

    by Gillette
    Replies
    20
    Views
    1,325

    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.
  21. Replies
    212
    Views
    18,669

    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...
  22. Thread: Ventilation

    by Gillette
    Replies
    150
    Views
    12,467

    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...
  23. Thread: Ventilation

    by Gillette
    Replies
    150
    Views
    12,467

    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.
  24. Replies
    5
    Views
    554

    Thanks, Ellie.

    Thanks, Ellie.
  25. Thread: Ventilation

    by Gillette
    Replies
    150
    Views
    12,467

    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,...
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