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    Thanks Ellie

    Unfortunately I have a very busy week, which is nuisance as I have an important speech to write for Sunday. It’s my younger son’s wedding and, with my eternal thanks to the CHC for their contribution, I cannot go to the wedding. I knew it would be really challenging to organise getting there but the delay in leaving hospital made it impossible.

    Rant over. I’m feeling sorry for myself and my younger son tonight, as well as thoroughly fed up with MND.

    As for today’s good thing, I think it must be snuggling in bed with my emails.
    Dina

    Trying to keep positive, but not always managing.

    Comment


      Great news that Steve is home, Sue.

      The study day sounds good. Well done to Steve for agreeing to give a patient’s perspective.
      Dina

      Trying to keep positive, but not always managing.

      Comment


        Hi Sue,

        I am also happy to hear that Steve is home with you.

        My husband found it very intrusive to have carers in the house and it took a while for him to get comfortable with their presence (in his house) To be fair to the carers, they do try and melt into the background. I found myself caught in the middle, so to speak, but we all found an equilibrium.

        I'm glad you're getting much-needed sleep.

        Good on Steve for taking part in the respiratory teaching day.

        Love Ellie.
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

        Comment


          Hi Dina;

          Glad you're home and thought that things would be extra hard for you to start with. Hopefully you will get the same carers who will understand most of the things you want.

          It's a good idea to have some instructions written down. When I used to stay in the hospice for a week I had to do that because I could not talk. You find most people just scan it and then do what they think and in any order. The last time I went in, I put "please read each bit out loud so I know where we are", at the top of each set of instructions.

          One evening they sent in a African woman that was there as a standby because they were short staffed. She said please let me help you in broken English. She had difficulty reading basic English, so to be asked to read it out aloud was unfair but she done it. I have the greatest admiration for her, it took a couple of hours to shower me and get me to bed because of communication and my problems but we both enjoyed it and felt good afterwards.

          Sorry to hear about you and your son's wedding. That is so hard on 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.

          Comment


            That's just horrible, Dina. That whole CHC process and its delay has a lot to answer for

            I am sorry you're having to miss your son's wedding and hope you can watch some of it on streaming.

            Take care.

            Love Ellie.
            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

            Comment


              I’m pleased that both Dina and Steve are now settling into a routine at home. I am looking forward to seeing Steve and Sue at our next meeting and I am pleased that Sue is now getting a well deserved break from her role as principal carer.

              For Dina it is sad that you can’t attend your son’s wedding but I hope you can see the photos or maybe a video. Our son got married in August and we only received the photos last week. I shouldn’t complain since he came over from Tokyo with his intended to marry here because he didn’t want me to make the journey to Japan.

              Love to all.
              Barry
              I’m going to do this even if it kills me!

              Comment


                I've just read the messages on here as we've been away.

                Welcome home to Dina and Steve. I really hope you establish a workable routine with your carers and that everyone gets some good rest.
                Sorry about your fall Barry .. hope you're healing and are not too sore.

                So sorry Dina that you're missing your youngest son's wedding. I'm not surprised that has really made you low especially as you have had so much to cope with recently. It brings it home how much MND effects the lives of us and our loved ones ( as if we needed reminding ) Hopefully you will get a good link to the wedding .

                Stay warm and take care everyone,
                Love Debbie x

                Comment


                  Today’s good thing relates to our local MND team. In Bury, we are lucky to have our own MND community team. I have had brilliant service and support from the team. The way they work shows that they are committed to giving the best to and for their patients. I cannot praise them highly enough and I am thrilled that their dedication and hard work have been recognised. They have been awarded Team of the Year by our local NHS trust ahead of 34 other teams.

                  Well done MND team Bury, you rock!
                  Dina

                  Trying to keep positive, but not always managing.

                  Comment


                    That is good news and great to hear.

                    Congratulations MND team Bury. It sounds like you totally deserve this recognition.

                    Comment


                      That is encouraging news Dina.

                      It's good to hear that Bury is probably taking their statutory obligations, as well as the recommendations in the NICE guidelines, seriously.

                      Its a shame that not all Local Authorities and NHS Trusts are doing the same (they probably blame lack of Government funding - but if Bury can meet the needs of their patients to such a high standard, shouldn't they all be able to? (just my thoughts)

                      Many Congratulations Bury!

                      Comment


                        TODAY’S GOOD THING: we were able to watch my younger son’s wedding ceremony via video call, this afternoon.

                        The second good thing was that my next door neighbours gave me a bouquet today. I love having cut flowers in the house.
                        Dina

                        Trying to keep positive, but not always managing.

                        Comment


                          Hi Dina;

                          I'm so please that you had a live link to his wedding. It's always worrying for us to trust the new technology.

                          It's always nice to have flowers around.

                          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.

                          Comment


                            Hi Dina
                            Glad you were able to see your son's wedding via technology. And flowers from your neighbours.
                            You have definitely had a good day.
                            Love Sheila

                            Comment


                              I'm so glad you got to see your son's wedding, Dina.

                              And what kind neighbours you have !

                              Love Ellie.
                              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                              Comment


                                Thank you for kindly sharing your good news with us Dina.

                                It's wonderful to hear that you could watch the wedding ceremony - and many congratulations to your son and new daughter-in-law.

                                I'm glad that you have got such kind and thoughtful neighbours. Lovely flowers for a lovely lady! ... and did you know that flowers can dance?..
                                http://https://m.youtube.com/watch?v=ryUxrFUk6MY#searching

                                Love
                                Kayleigh x

                                Comment

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