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    Yes, Lynne, I think we are very lucky with the NHS services locally.
    Dina

    Trying to keep positive, but not always managing.

    Comment


      Hi Ellie
      As you know with MND things can change by the day. As long as his weight is maintained etc we will cope. We will definitely look at overnight feeds if needed though. At the moment I put water up and give meds before and after feeds so not a problem yet. xx

      Comment


        Nice to meet you today Dina

        Great wheels too
        Last edited by Dis1960; 26 September 2019, 17:13.

        Comment


          It's always nice to meet other people from the forum.

          I just wish it was in a different situation.

          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


            Originally posted by Dis1960 View Post
            Nice to meet you today Dina

            Great wheels too
            Thanks, Douglas. It was good to meet you too. The wheels might look the part but, my goodness, it is so uncomfortable.
            Dina

            Trying to keep positive, but not always managing.

            Comment


              If you feel like being bored, read on...

              My CHC Funding journey continues apace, albeit slower than a snail's pace.

              The CHC Panel met on Wednesday and discussed my case - but no decision was reached! They have said they need the case looked at by independent third parties including... social services. I cannot figure out how the organisation that decided to ignore its Duty of Care to me, can be regarded as "independent". The CHC Nurse wouldn't give me any real information about what the Panel wanted, who else they would be asking, or when a decision was likely to be made. All very unsatisfactory.

              The CHC Nurse had discussed my case with her Lead Nurse and, between them, they agreed that she should begin taking steps to set up a care package for me. She had found an agency who think they can provide the whole package. Someone from the agency has contacted the ward and is coming to see me on Monday.
              Dina

              Trying to keep positive, but not always managing.

              Comment


                Sorry Dina, that it's so slow and no information.

                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


                  What mixed messages you're being given Dina

                  I take some positives that the CHC Nurse has identified a potential care company and they're coming to see you on Monday, though, at the same time, she's referring your case back for 'independent' scrutiny...

                  When talking to the care company, don't be too put off if they're not experienced in dealing with people with MND - the attitude and aptitude of carers tends to be more important than previous experience with someone with MND.

                  Hope this whole sorry mess gets sorted very soon.

                  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 getting so fed up - the more so as it's getting harder each day to type and then my hand touches the screen and it all disappears. Grump. Grump. Moan.
                    Dina

                    Trying to keep positive, but not always managing.

                    Comment


                      Hi Dina;

                      Touch screens can be more difficult than laptops and keyboards. I have troubles with long nails and curling fingers quite often.

                      That's all you need, more hurdles .

                      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


                        Hi Terry,

                        Thank you! Your comment about keyboards reminded me that I have a cover and keyboard at home that I could use. Brilliant! My mood has lifted already.

                        You certainly know how to please a woman, Terry. But, of course, Kayleigh already knew that, didn't she?
                        Dina

                        Trying to keep positive, but not always managing.

                        Comment


                          Dina, to my shame, I don't know if you can talk or not, apologies.

                          If you can, you could use voice commands and dictation.

                          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


                            Originally posted by Ellie View Post
                            Dina, to my shame, I don't know if you can talk or not, apologies.

                            If you can, you could use voice commands and dictation.

                            Love Ellie.
                            Hi Ellie,

                            That's ok, there's no reason why you would know.

                            I can still talk, although it's getting weaker every day. As the wifi is so unreliable here, I'll have to see what capabilities my ipad has already included in the operating system.
                            Dina

                            Trying to keep positive, but not always managing.

                            Comment


                              Hi Dina;

                              "You certainly know how to please a woman, Terry." I don't know about that Dina but I can make them laugh one way or another. I quite often try to use sign language for thank you, most people think I'm blowing a kiss.

                              I was wondering about voice control as well but not much use for the Chimp or The Cat. They don't understand our grunts, meows or my purring.

                              It would be good if you have a fitted keyboard in a case that's quite easy to use. I used to write anything longer out in Word, ( Laptop) and then copy and paste it on the forum.

                              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


                                It would be good if you have a fitted keyboard in a case that's quite easy to use. I used to write anything longer out in Word, ( Laptop) and then copy and paste it on the forum.


                                Good thinking, Terry. I think I shall have to start doing that.
                                Dina

                                Trying to keep positive, but not always managing.

                                Comment

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