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  1. Thread: Bed Advice

    by slp
    Replies
    11
    Views
    1,251

    Hi Sue I know exactly how you feel and it is...

    Hi Sue

    I know exactly how you feel and it is a tricky one. When I was first diagnosed the community team threw everything at us and I think that they do that is because everyone takes a different...
  2. Replies
    30
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    4,337

    Hi everyone I too resisted the RIG for too...

    Hi everyone

    I too resisted the RIG for too long. I thought that I was doing fine although I knew that I was losing weight. It wasn't until I had a conversation with a close friend who is a nurse...
  3. Thread: Sore tongue

    by slp
    Replies
    4
    Views
    1,271

    Ellie you really are a star ! I never even...

    Ellie you really are a star !

    I never even thought about a gum shield x I am going to try one at night
    Thanks Sarah x
  4. Thread: New member!

    by slp
    Replies
    7
    Views
    1,806

    Welcome Hazel x I too am sorry that you have...

    Welcome Hazel x
    I too am sorry that you have had to drop in but you will find an answer to most questions you have from someone here x

    It really is quite odd at the moment isn't it? I am...
  5. Replies
    24
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    4,339

    Hi Ellie yes it is a smooth liquid and you have...

    Hi Ellie
    yes it is a smooth liquid and you have to keep it in the fridge x I have been having it in liquid form for 12/18 months
    love Sarah xx
  6. Replies
    24
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    4,339

    PS I also take Lansoparazole but in liquid form...

    PS I also take Lansoparazole but in liquid form in my PEG x
  7. Replies
    24
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    4,339

    Hi Sarah I feel for you. I have just recovered...

    Hi Sarah
    I feel for you. I have just recovered (fingers crossed ) from two months of dreadful constant diarrhoea. It started for no conceivable reason and I ended up in hospital for a week. I had...
  8. Replies
    6
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    1,199

    Thanks Ellie x

    Thanks Ellie x
  9. Replies
    6
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    1,199

    Thanks everyone I do have the headmaster collar...

    Thanks everyone
    I do have the headmaster collar but it is very uncomfortable and hurts my chest. My Physio is coming on Tuesday so I will ask her to order one. Ellie did your Physio fit it or were...
  10. Replies
    6
    Views
    1,199

    Head up neck support

    Hi everyone

    I hope that everyone is coping with the dreary winter weather x I wondered if anyone is using the head up neck support? I really need a comfortable and supportive support for when I...
  11. Replies
    6
    Views
    8,046

    Hi Hayls I have had a PA for about 4 years and...

    Hi Hayls
    I have had a PA for about 4 years and it has worked very well. I started with someone 3 days a week and over the years it has risen to 5 days. I have been in receipt of Direct Payments and...
  12. Replies
    47
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    6,350

    Pure therapy in a little body Ellie x I am so...

    Pure therapy in a little body Ellie x I am so lucky x
  13. Replies
    47
    Views
    6,350

    Dear Sarah I don't think that this time of the...

    Dear Sarah
    I don't think that this time of the year helps either because we are all stuck indoors too much x I do find that even ten minutes sat in the garden watching the birds and the dogs gives...
  14. Thread: So tired

    by slp
    Replies
    45
    Views
    7,012

    Isn't it wonderful to see signs of spring and...

    Isn't it wonderful to see signs of spring and when the days start to drag out you know that you have nearly got winter behind you. Although I see that there may be snow on the moors tonight

    I...
  15. Thread: So tired

    by slp
    Replies
    45
    Views
    7,012

    Hi Ellie I am really fed up with it but I am...

    Hi Ellie

    I am really fed up with it but I am more concerned about being on so much imodium every few hours every day but my GP (who is brilliant and comes to the house regularly ) and my dietitian...
  16. Thread: So tired

    by slp
    Replies
    45
    Views
    7,012

    Hi Terry I am so sorry to see that you have...

    Hi Terry

    I am so sorry to see that you have been in hospital and I read that you lost a lot of weight, maybe that could be making you feel tired?

    I have been in hospital too for a chronic...
  17. Replies
    12
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    3,439

    Hi Andy I have been trying to remember the...

    Hi Andy

    I have been trying to remember the things that helped me as various parts of the body ceased to function as they should
    It is is quite hard to recall but as my hands and arms stopped...
  18. Replies
    11
    Views
    2,351

    Hi Sue I can't use the hand controls on my...

    Hi Sue

    I can't use the hand controls on my wheelchair any more either but I had a control fitted that I can operate with my chin which is amazing but I can't use it despite my best efforts !...
  19. Replies
    6
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    1,527

    Thanks Terry and Ellie I am hoping to go on...

    Thanks Terry and Ellie

    I am hoping to go on the 23rd just trying to drag Ian away from work ,we have a haulage company based from home and he is a workaholic !

    I will contact the people you...
  20. Replies
    6
    Views
    1,527

    Thanks Debbie We have travelled quite a lot...

    Thanks Debbie

    We have travelled quite a lot in the last few years and have had very good experiences of the assistance and have found it very easy

    My concern is taking a suitcase full of...
  21. Replies
    6
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    1,527

    Travelling with liquid food Advice please

    Evening all

    I am thinking of booking a week away at the end of the month for much needed sun for me and a rest for Ian my husband

    However things have changed since our last holiday because I...
  22. Replies
    12
    Views
    2,734

    Hi Amanda That sounds like a good start , my...

    Hi Amanda

    That sounds like a good start , my pump etc is arriving tomorrow and my lovely nurse is coming to set it up

    I am looking forward to getting started !

    I hope that tonight goes...
  23. Replies
    63
    Views
    12,912

    Maybe we can share some ideas? I like salmon...

    Maybe we can share some ideas? I like salmon with mayo and spring onions chopped up small , I crave a bit of flavour ,chicken sliced never cubed , mixed with mayo and pesto, I only eat a little bit...
  24. Replies
    63
    Views
    12,912

    Hi Icecream is a funny one isn't it because...

    Hi

    Icecream is a funny one isn't it because some bits can melt and cause coughing and I have to hold it in my mouth for a while and then swallow , I find custard and yogurt easier

    It's...
  25. Replies
    63
    Views
    12,912

    hi Pink how much do you have over 24hrs? and...

    hi Pink

    how much do you have over 24hrs? and what do you have? it is not fun being so skinny!
    best wishes

    Sarah x
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