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    #1

    Communication symbol

    I assumed that MNDA would announce on the forum what they launched today and put on Facebook.

    Since I appear in the video please don’t take this sharing as egotistical but I believe in increasing awareness of the problems people like me have when your voice fails. We hope that many businesses and organisations will adopt the practice and that in time the symbol will become as widely recognised as the wheelchair for disabled.

    MND Association joins partner organisations to launch Communication Access Symbol | MND Association
    https://www.mndassociation.org/mnd-association-joins-partner-organisations-to-launch-communication-access-symbol/?fbclid=iwar0tas2dnsvpgqbpyat0rkrrvkbyhgw_u1s8nctrnydsut0okqp0vkfk14u
    As face coverings become the norm in the current COVID-19 climate, communication between people is becoming increasingly challenging – and – for approximately 14 million people, who have additional communication needs, it is even tougher. Today (12 November 2020), a new disability symbol, designed to make life easier for millions of people in the UK,... Read more »


    Barry
    Last edited by Barry52; 12 November 2020, 21:45.
    I’m going to do this even if it kills me!
    Tags: None
    • 👍 1
    #2
    Well done, Barry!

    Doug
    Diagnosed April 2017

    Comment

      #3
      Can I get an autograph please Barry? 👍
      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

      Comment

        #4
        Well done. You now have a fan club 😙
        when i can think of something profound i will update this.

        Comment

          #5
          You're great, Barry, well done and thanks!

          Really hope that the scheme is successful and that people with communication difficulties notice a genuine improvement in their retail/social experience.

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

          Comment

            #6
            My daughters are both primary school teachers and I was discussing communication aids with them recently. One daughter has a young boy in her class who has speech issues. Although he has a speech app he feels awkward using it in front of the class. I guess some children are like adults when it comes to patience. I made a short video addressing him personally using my SpeakUnique voice. My daughter said his face lit up when she played it to him and that gives me a warm fuzzy feeling.

            Barry
            I’m going to do this even if it kills me!
            • 👍 2

            Comment

              #7
              Originally posted by Barry52 View Post
              ... and that gives me a warm fuzzy feeling.
              And so it should, Barry - it was a very kind and thoughtful act.

              Love Ellie.

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

              Comment

                #8
                That's great, Barry, sounds like a great idea. I am just getting to the stage that I dread having to sort things out verbally, and this dread makes my voice even worse. I have stored my voice with speak unique, and guess I need to get an iPad to use it, as my desktop is not that portable of course! It's interesting for me to hear another speak unique voice, I find that the voice sometimes doesn't leave enough time between sentences, and of course sounds fairly monotonous, but then again so much better than mine as it is!
                Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

                Comment

                  #9
                  Hi Heather,

                  You can use the app on your phone either android or iOS. You can change the speed of the speech under settings and I always slow mine down. You rightly point out that speech is affected by stress and now I refuse to use the telephone unless there is a text option.

                  Barry
                  I’m going to do this even if it kills me!
                  • 👍 1

                  Comment

                    #10
                    Well done and thank you Barry. X

                    Comment

                      #11
                      Barry what is the text option on a phone? Must find out about that x
                      Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

                      Comment

                        #12
                        Originally posted by Heather R View Post
                        Barry what is the text option on a phone? Must find out about that x
                        Heather R you might find this interesting, although I've not used it.

                        Relay UK - homepage | Relay UK
                        https://www.relayuk.bt.com/
                        Helping people with hearing and speech difficulties communicate with anyone over the phone, using the Relay UK service.


                        Each day is made easier with a bit of humour.

                        Comment

                          #13
                          Thanks for explaining Gary.
                          I’m going to do this even if it kills me!

                          Comment

                            #14
                            Many thanks Gary x
                            Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

                            Comment

                              #15
                              How do you know which organisations have a text/relay provision? Is there a list of such organisations, or do you have to find out by chance? Similarly how do you find out which organisations have a chat facility online except by trying them? eg if you wanted an insurance company with chat. When you say telephone with text, Barry, do you mean this relay service? Thanks x
                              Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!
                              • 👍 1

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