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    Channel 4

    Wednesday 26th August 9 p.m.

    Sounds a bit strange to me.

    Doug
    Diagnosed April 2017

    #2
    Hi Doug,

    I’m not sure who dreamt up the title of the human cyborg as it sounds sensationalist but I will be watching next Wednesday. I suppose Peter is a modern day version of Stephen Hawking using current technology to prolong life with MND.
    I’m going to do this even if it kills me!

    Comment


      #3
      Hi Doug and Barry,

      it sounds very weird but I'll be watching too. Not sure I'd want to be a cyborg but maybe I should reserve judgement.

      Love Debbie x

      Comment


        #4
        Peter himself wants to be a cyborg - interesting, alternative chap, I follow him on Twitter etc.
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

        Comment


          #5
          I read the article in the Guardian. I thought it was interesting, husband (newly diagnosed) thought it depressing. I cheered him up by finding that 2 Scottish Hospitals have a new trial starting involving (Mementin - an existing dementia drug combined with an existing depression drug. Dad has been on the dementia drug for 12 years and it has slowed his dementia symptoms. Just my 2 pence. We will see, fingers crossed.
          Donna

          Carer for husband Thomas, diagnosed with MND of Fail Arm Type in July 2020.

          Comment


            #6
            I don’t plan to watch x

            Comment


            • I will be looking in for inspiration. Technology will deliver.

              Comment


                #8
                Good morning,

                I'm interested partly because Peter preceeded me as a trustee of the Association and my understanding is that he left partly because he was using the contacts he made for personal benefit - an interesting situation given the purpose of the Association.

                In my experience is always a challenge to have beneficiaries as trustees because of that issue – personal benefit – and also sometimes when those beneficiaries have communication difficulties – which of course is the case with some of us warriors. It is always best to recruit trustees for their skills against the skill matrix of those required to govern the organisation and find some other way of taking representations from the beneficiaries.
                Warmly


                Andy

                ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 90% left arm and 90% right arm, plus other bits including both shoulders and also some breathing issues – Campaign contact Winchester and Southampton branch, and trustee of the Association

                "Things turn out the best for people who make the best of the way things turn out"

                Comment


                  #9
                  Thanks Andy.

                  Interesting.

                  Doug
                  Diagnosed April 2017

                  Comment


                  • Pretty disappointing show and quite depressing. Some people know how to game the NHS. It reminded me off final year projects at Uni. No real plan... just let's see if we can do it, and then put it in the bin.

                    Meanwhile, most of us struggle to get Grid working reliably.

                    Comment


                      #11
                      Very Sad ,was hoping to write something positive about last nights program on Chanel 4 ,but to see so many professionals jumping through hoops to please ,when we know how hard it is to get Anything maybe I should ask my OT for a new Avatar

                      Comment


                        #12
                        A thought provoking program. Do I want to live life that? NO. I can understand why Peter has pursued this since he has science in his DNA. I deeply resonate with his comments about loss of speech and although we have the technology to capture our voice and use it via an app, our audience doesn’t have the patience to wait for our reply. I look forward to reading other views on this.


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

                        Comment


                          #13
                          I saw it last night and also was slightly disappointed, I was hoping to see something like an external robotic arm which could assist with communication and other every day activities. Obviously a lot of money was spent there though.
                          Diagnosed 2nd Jan 2020
                          Both arms/shoulders affected, left worse than right.
                          Progressive Muscular Atrophy suspected

                          Comment


                            #14
                            Good morning,

                            I'm still working through what I feel about the programme last night – I certainly ended watching the programme feeling sad for me and for him.

                            I've always said that I will take surgical interventions until I think I've had enough but perhaps the Peter principle applies somehow in that somebody gets promoted to one level above that which one is competent to carry out and perhaps the same applies to surgical interventions. In other words you don't really find out that you have gone too far until you've had that one.

                            I suppose I was left with the impression that Peter was less than satisfied with where he eventually got to which may be why I left feeling sad
                            Warmly


                            Andy

                            ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 90% left arm and 90% right arm, plus other bits including both shoulders and also some breathing issues – Campaign contact Winchester and Southampton branch, and trustee of the Association

                            "Things turn out the best for people who make the best of the way things turn out"

                            Comment


                              #15
                              Usually, I regard all publicity about MND as helpful.

                              But this programme worried me from the outset. The advance publicity seemed too sensational, with its emphasis on science fiction concepts and pretty graphics.

                              This continued into the programme, making it difficult to identify useful information amongst the hype. I got rather fed up constantly being told what a distinguished scientist he was.

                              Scott-Morgan moved away from proper science a long time ago. Having studied computing and after getting a Ph.D in robotics from Imperial – that was in the early days of the department – he moved into the smoke and mirrors world of management consultancy. It was the fashion at the time to try to apply the sort of systems analysis used in computing to flesh and blood organisations.

                              To be fair, in 1994 he published a book called The Unwritten Rules of the Game, which gained some notoriety.

                              It would have been nice to see and hear more about that wheelchair.

                              Given they had two years’ funding, I would have preferred the production company to have done a documentary on, say, a drug trial or inequalities in the care system. Much more useful!

                              Doug
                              Diagnosed April 2017

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