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    Peter 2.0

    I've just read Peter Scott-Morgan's autobiography about his journey to transform himself into a human cyborg and wondered if anyone else has. For those who haven't, the book alternates chapters about his diagnosis with MND and his determination not to die from it, with an account of his personal life.

    In Part 1, we learn about his time at public school, interspersed with the difficulties of getting a diagnosis. I rather empathised with this as, like Peter, I was told in the first instance that I definitely didn't have MND and was, like him, only diagnosed after a second EMG, by which time you're pretty certain you have it anyway. He finds the medical establishment conservative and reluctant to personalise and be pro-active in his care and decides to opt for a series of surgeries and robotic solutions of his own devising.

    Part 2 contains a lot about the scientific upgrades he has planned, not to enable him to live a 'normal' life, but to continue being himself and interact with others in the way that he wants. However, it was difficult to see the benefit to the MND community at large: not all of us have access to voice synthesising (not voice banking) or Pinewood Studios to have our facial movements preserved. In his personal life, he comes out to his parents and meets the love of his life.

    In Part 3 his physical condition worsens and he expresses disappointment with the MND charities and organisations for being reluctant to try out new ideas. He worries about the medical profession writing people with MND off and refusing treatment. After initial hostility, his parents come round to the idea that their son is gay and attend his wedding to Francis. The book finishes in the realms of Science Fantasy with a character and in a land he invented at school.

    If you enjoy reading autobiography, you will find this book interesting, but it is not about finding a cure for MND. It is about living with the disease in the best way possible, through technology and elective surgery.

    #2
    Thank you for posting this, Sally-Ann.

    I didn't read the book but did see the C4 documentary.

    I admire Peter himself and Francis too, but find the term 'human cyborg' purely sensational, and used solely to attract attention which, after all, is to ensure a TV audience and book sales - it's just as a person with an MND, I find the term a bit disrespectful.

    Apart from the laryngectomy and the expensive special voice, there is not much difference between the man who wants to be a cyborg and many people with ALS/MND.

    I felt sad for Peter when I saw some of his dreams dashed and my heart sank when he wore an iPad on his chest with his avatar on it....

    However, much of what he says in his book is so true and something with which we can all identify. If it gets people talking and thinking, that's a good thing.
    ​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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      #3
      Yes agree with that Ellie. the more publicity the better..........hope
      Husband Albert diagnosed PMA Feb 21

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        #4
        Just ordered from amazon

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          #5
          Having watched the documentary in the hope of seeing something revolutionary I was left disillusioned and saddened by Peter’s aims. I can’t see the autobiography attracting interest outside the MND community but I am happy to be proved wrong.
          I’m going to do this even if it kills me!

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            #6
            I saw the documentary and also an interview with him and his partner. I was impressed with his positivity and determination to use his skills and contacts to find as many tech solutions as possible to the different challenges of mnd. I haven't read the book yet, but understood he got an automaton or something that will learn to "think" more like him, by suggesting replies or sentences he could make for Peter to chose from, and gradually learn in this way what Peter would say naturally. So it differs from Stephen Hawkins who typed out with his eyes exactly what he wanted to say, in that what the cyborg hologram of Peter says is the automaton's best guess at what Peter would say, as Peter prefers the speed of this and is not so concerned with exactitude. So it's more than a just an expensive special voice. Sorry , very badly explained and maybe quite wrong! That is my understanding at the moment, and clearly not what is available to the average person with mnd. The two of them have set up a charity that let people needing a voice to get one for cost price, but no idea what that is. But presumably they don't get the hologram and automaton learning??? But all the best to them
            Diagnosed July 2020, ALS bulbar onset.

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              #7
              That AI system of offering learned, personalised answers to questions etc. is still work in progress so, for now at least, he uses a standard predictive text system.
              ​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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                #8
                Oh thanks for the correction, Ellie, maybe I was picking up on his vision for the future. Must have a proper read x
                Diagnosed July 2020, ALS bulbar onset.

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                  #9
                  I saw the two of them interviewed recently (by Philip & Holly) and remember Francis saying that, that's the only reason I know!
                  ​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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                    #10
                    I didn't see the documentary. I think it was on before I was diagnosed, but at a time when I suspected that I had MND. I made a decision not to watch because I didn't want to frighten myself. What disappointed me about the book was that I expected some practical hints and advice that we could all build on, but there's nothing really, unless you want to have a lot of surgery.

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                      #11
                      I saw the documentaries too. Peter, like Hawking has bags of money so had options that most of us don’t have. While I admire his fighting spirit it was also to me sad. He wasn’t able to achieve what he’d set out to do about Ai. He designed his own wheelchair which I don’t feel is money well spent (but it’s his to spend however he likes) and I found his Avatar on his his chest (on his device) troubling . But I wish him much luck in all of his endeavours. Lynne
                      ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                      I'm staying positive and taking each day as it comes.

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                        #12
                        Originally posted by SallyAnnB View Post
                        I didn't see the documentary. I think it was on before I was diagnosed, but at a time when I suspected that I had MND. I made a decision not to watch because I didn't want to frighten myself.
                        The documentary is still available on All4 if you want to watch it, now that you read the book.

                        Originally posted by SallyAnnB View Post
                        What disappointed me about the book was that I expected some practical hints and advice that we could all build on, but there's nothing really, unless you want to have a lot of surgery.
                        Well, look no further than this Forum for all the practical advice you could possibly need, all for free too 😄 xx

                        ​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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                          #13
                          Personally I can't stand them but publicity is publicity 😁

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                            #14
                            Originally posted by Ellie View Post
                            The documentary is still available on All4 if you want to watch it, now that you read the book.


                            Well, look no further than this Forum for all the practical advice you could possibly need, all for free too 😄 xx
                            Yes, thanks. I noticed that. I might have a look, if only to see what Francis looks like.

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