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    MNDA Study - Communication Devices ?!

    The MNDA are correct in asserting these devices are very important to us but that is far as the MNDA knows because there is no IT expertise at the MNDA!!

    This is mind-blowing given that we are heavily dependent on IT!!

    Be in no doubt that we are poorly served by the NHS and MNDA.

    Grid3 is 'Off the Ark' in modern technology terms and is pretty much the same as it was 10 years ago!

    The NHS pay through the nose for Grid3 and pay for extra licenses unnecessarily!

    The current MNDA study is totally unnecessary, as modern apps support 'Localisation'!!

    Mind-blowing... but beware that the MNDA are spending a lot of our money on these studies with their cronies.
    Copyright Graham

    #2
    It makes you wonder what the priorities really are? As a mute I put communication at the top of my list. πŸ€”πŸ˜•β˜ΉοΈπŸ˜‘xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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      #3
      The MNDA were very helpful and generous over supporting my voice banking.

      Doug

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        #4
        It is important not to go off topic Doug, unless you have spotted an inaccuracy.

        For everyone of us, technology is the biggest thing. Yes indeed Matt, the MNDA's priorities are wrong and we hope that Andy and other Trustees take note.

        The MNDA not having any IT expertise means that we are being fobbed off with yesteryears' technology.

        The iPhone3 was out when Grid3 was introduced! That is how bad it is!
        Copyright Graham

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          #5
          Hi this is Richard Cave here - I work with the MND Association part time and with Google part time. You raise very important points and technology for communication is a key area that the MND Association are focusing on. We are working directly with big-tech corporations including Google and Microsoft, and communication aid providers including Smartbox and Therapy Box. We want to ensure that technology innovation takes into account the needs of people living with MND, and provide opportunities to participate in development and testing wherever possible.

          An example: we are working directly on the Euphonia project g.co/Euphonia - this is a promising technology that aims to better understand speech that has changed (speech affected by dysarthria), so that more people living with MND can use tools like Google Assistant if voice has started to change. People living with MND are testing this app and are providing feedback directly to the development team. The same is true with a free app called Look To Speak - which can be used as an alternative to an eye gaze device for key messages if the main device is unavailable, or cannot be used in the environment (for example in a shower room) The link is here: https://experiments.withgoogle.com/looktospeak.

          I would love to arrange an online session to share with you these initiatives and others we are working on - it would be wonderful to discuss your views and ideas. Let me know what you think, and you are of course always welcome to contact me directly [email protected] 07898 721278.

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            #6
            Don't forget those of us who remember talking. πŸ˜‰πŸ˜
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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              #7
              speedoftrust27 Notwithstanding technology for communication purposes, including the likes of Look to Speak, traditional software to allow for full PC control is very poor. Continuing to use a PC and all programs/apps once one's hands and speech are no longer functioning, is vital to many, and the usual software supplied doesn't have the agility to quickly and easily do this, an important factor not to be overlooked.

              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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                #8
                Ellie thank you so much for this - I agree, there is much to improve and is important. Let's keep in touch as there may be some work on this upcoming.
                matthew55 thank you and yes for sure - I don't want tech companies to forget any of us, and another reason why we should be involved

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                  #9
                  Originally posted by speedoftrust27 View Post
                  Ellie thank you so much for this - I agree, there is much to improve and is important. Let's keep in touch as there may be some work on this upcoming.
                  I lasted less than a week using Grid software, frustrated me no end 😏 I trawled the internet found far superior open source mouse emulation software πŸ‘πŸ‘
                  ​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
                    Hi Richard,

                    Thank you for your post.

                    Like Ellie, I find the Grid3 very clunky and difficult to use using the FastTalker and the other options are considerably worse! However, operating my IR devices from the Grid3 makes the difference and that is why I use it.

                    I am unfamiliar with the other projects that you mentioned perhaps because I lost my voice pre voice banking.

                    The reason I posted is because I know that modern app technology uses localisation and so there is no point in the MNDA spending all that money when modern apps do it anyway! The actual problem is that the apps need to migrate to .Net Core instead of .Net Framework. At that point the apps may move beyond 2010 technology.

                    I became so disillusioned with the apps that I decided to do my own in 2018. I have many ideas for improvement but I have a company that has worked in technology for 21 years and I been in software and electronics for 41 years. 15 years of MND has given me valuable insights into what fits. I would consider guiding the projects but clearly not as an amateur.
                    Copyright Graham

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                      #11
                      Go Graham!!!!!! πŸ‘πŸ‘πŸ‘πŸ‘xxx
                      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                        #12
                        Graham thank you so much for this - I would very much like to take you up on your kind offer. Let's keep in touch - your technical expertise is very welcome indeed.

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                          #13
                          Thank you Richard. I will email you shortly.
                          Copyright Graham

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                            #14
                            I emailed you yesterday Richard.

                            Kind regards.
                            Copyright Graham

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