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    #16
    Hi All,

    I have to agree with Andy and say I was disappointed as Peter seemed also to be. Good luck to anyone trying something groundbreaking but think the money and expertise would have been put to better use. I really couldn’t live like that and also found it depressing.
    Jerry x

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      #17
      Hi everyone ,

      I was left feeling a bit disappointed in the programme because it glossed over the details of his surgery and the reason he wanted it. It was a great opportunity to educate people about the way Mnd affects the body but it seems that was missed. I felt that Peter didn't achieve what he wanted to and it was all over very quickly. However I would like one of those chairs that enable standing. I follow Peter on twitter and his journey is fascinating and well worth reading about if you are interested.

      Best wishes from sunny Devon

      Sarah xx

      Comment


        #18
        Hi Sarah

        Details of the surgery are given here.

        https://academic.oup.com/omcr/articl...b-28e85f6bfb8e

        Combining three standard procedures in one operation was certainly cost effective.

        Doug

        Comment


          #19
          Each to their own - if that's what Peter wants, best of luck to him & Francis. He has the contacts, drive & resources to be (somewhat) in control of his life.

          As to the programme, here's my feedback... I thought the narration script was fatalistic, melodramatic, cringe-worthy and demeaning to those of us with MND.

          The end result, as many have pointed out, fell far short of Peter's wishlist, which, to me at least, shows that money, PhDs & industry contacts does not guarantee success, for now anyway. Perhaps I'm being naive or perhaps Peter was but at least he gave it a go.

          I watched it with my 2 teenage kids who were quite scathing of the whole programme, that kind of surprised me, thought they'd like the Cyborg aspect. I actually felt good about myself after watching it - I'm doing OK without needing to have a tablet with my Avatar sitting on my chest.

          Those standing wheelchairs are readily available - Terry had one, a Genie - they're pricey enough but give a great sense of height equality and no more staring at strangers' bellies in company.

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

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            #20
            Thanks for your illuminating feedback Ellie. It was particularly helpful to hear your kids' reponse.

            You make a very good point - that many here have overcome great obstacles without such fanfare.

            Doug

            Comment


              #21
              Spot on Ellie, I was left feeling very positive about my own situation. I am a few years behind you but am enjoying my life and am happy as I am. Good luck to Peter I can't wait to see what he does next

              Sarah xx

              Comment


                #22
                Thanks Doug

                I have followed Peter for some time now. They live very near us
                thanks for the link
                Sarah x

                Comment


                  #23
                  I intended to watch the programme but only remembered twenty minutes into it. But I’d already seen the couple discussing how Stephen had got to this point and what he hoped to achieve.

                  Stephen was already an AI research scientist before MND. He wanted to use his scientific background to the benefit of his longevity (and the same for other people who follow him).

                  It was a bit sad to see that he had to drop his desired brain device because it had proven too slow in communicating. It’s a research project for the future.

                  I agreed with my neurologist (at my last online clinic appointment) to volunteer for helping a PHD student. His subject is robotic devices to help people with MND. This is his first year so I was advised that he may contact me by telephone in the first instance after about three months.

                  After much thought I decided to have whatever intervention is available to extend my life. I’ve discussed this with my husband and he’s happy to back me in whatever I decide. I envisage being fulfilled whilst I can communicate, read, make decisions, watch news and films, therefore so long as my eyes and brain are functioning fully.

                  I’m still just about getting around on my walker indoors and not fallen for three months but it won’t be long until I’m permanently in my powered wheelchair to get about. Lynne

                  Last edited by Lynne K; 28 August 2020, 23:19.
                  ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
                  I'm staying positive and taking each day as it comes.

                  Comment


                    #24
                    That’s very interesting Lynne. Do let us know how you get on. Which university department is involved?

                    Tell the researcher what you really need is an anti-gravity suit!

                    Seriously though, it’s different from the jabs and scans research many of us here are involved with. It could have more immediate benefit.

                    It sounds as though we’re roughly at the same stage as far as mobility is concerned.

                    Hugs

                    Doug

                    Comment


                      #25
                      Beware Snake Oil salesman. 😉

                      Comment


                        #26
                        Is there any information on the standing wheelchair and exo skeleton stuff. ie mechanical arms etc

                        interested in the research Lynne K

                        I did not watch the programme but read 2 articles. Thought is was a bit on the melodramatic side, he was being heroic and brave etc.

                        Heroic to me is doing something brave, when you have a choice of not doing it.

                        Stoic is more the word, husband and I are going for at the moment

                        cheers

                        Donna

                        Comment


                          #27
                          Hi Donna.

                          Peter has the Permobil standing wheelchair: http://permobilus.com/product/f5-corpus-vs/

                          Other brands are available, search Standing Wheelchairs on the net.

                          I don't know about the other gizmos - or maybe they were just prototypes - but you may not know about the Neater gadgets for drinking and eating: https://neater.co.uk/#

                          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


                            #28
                            Hi Ellie

                            I had found the neater company, not sure if we are at that point yet but looks good

                            Will check out the other link re wheelchair.

                            Thanks for the links

                            Have a lovely day

                            Love
                            Donna

                            Comment


                              #29
                              An interesting 30mins on communication system used by Stephen Hawking and how the AI developed for it can be upgraded, expanded and improved for a new communication system for Peter Scott Morgan.

                              There is no Ta-Dah moment or working system to show but some folk will find it a worthwhile listen.



                              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


                                #30
                                Absolutely fascinating, Ellie. Thank you so much!

                                Some great concepts there.

                                Doug

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