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    #61
    Great to hear you got the CHC - you deserve it

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      #62
      Im still here. Been through a whirlwind of emotions. After having a second chest infection my condition has deteriorated. I made a decision to come off my nippy and the doctors spoke to me about it. I have thought of nothing else. I really dont know what to do as ive been given a array of drugs which has relaxed me a little. Plus my breathing is not so strained due to a drug to dry up secretions. They said id probably keep getting more infections. Ive told my husband and he isn't keen on it. Im having a family meeting with the doctors on Friday. As ive had half decent day im confused. Then wben i cant communicate with the nurses when they are trying to rol me or put the wrong creams on etc i just feel like a piece of meat and would do it there and then. Does anyone else feel like this?

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        #63
        Hi Pink,

        Sorry to hear that you have another chest infection but impressed that you seem to be able to breathe without nippy.

        I would have thought that the use of the nippy would help with any chest problems but it is a pain.

        Know what you mean about being treated like a piece of meat.

        Thoughts are with you.

        Love Terry
        TB once said that "The forum is still the best source for friendship and information."

        It will only remain so if new people post and keep us updated on things that work or don't work and tips.

        Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

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          #64
          thinking of you Pink xxxx

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            #65
            Pink, I am so sorry for your situation and that you have another chest infection.

            My thoughts are with you.
            Love Debbie xxx

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              #66
              Dear Pink,
              Thinking of you, hope you feel better soon.
              Sheila x

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                #67
                Sorry Terry what I meant was to come off the nippy permanently and let nature take its course. X

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                  #68
                  Hello Pink,

                  Sorry to hear that you have got another chest infection and I hope you are feeling a bit better today.

                  Thinking of you and hoping that the doctors and nurses are looking after you very well. Hopefully they are doing everything they can to make sure you are as comfortable as possible.

                  Love and hugs
                  Kayleigh x

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                    #69
                    You’re in an unenviable position Pink, for which there is no easy solution.


                    I’m glad the meds are keeping you comfortable.


                    Wishing you strength for Friday’s meeting.


                    Love Ellie.
                    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
                    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

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                      #70
                      Hi Pink

                      I don't know if you remember Lynne who use to be a forum member here, but she came off the nippy with the assistance of palliative sedation. A decision she made with her family and doctor.

                      Wishing you much strength, comfort, and most importantly peace of mind.

                      CCxox

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                        #71
                        Dear Pink,
                        I’m so very sorry to read your post.
                        I hope you’re comfortable and pain free. I too wish you strength for Friday.
                        Thinking of you.
                        Lots of love and more x
                        Helen

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                          #72
                          Originally posted by Pinkelle View Post
                          Sorry Terry what I meant was to come off the nippy permanently and let nature take its course. X
                          Hi Pink,

                          I thought that might be the case but you never know and I was edging on the safe side.

                          Hope you are comfortable and pain free.

                          Hugs Terry
                          TB once said that "The forum is still the best source for friendship and information."

                          It will only remain so if new people post and keep us updated on things that work or don't work and tips.

                          Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

                          Comment


                            #73
                            Thinking of you, Lovely Lady.

                            big hug.jpg




                            Love Ellie.
                            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
                            Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

                            Comment


                              #74
                              I too have been thinking about you Pink and hoping you are comfortable.

                              Love Debbie x

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                                #75
                                I have been thinking of you too xx

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