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Being Mute in 2021

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    #16
    Heather I think it's wether we see sunshine or rain. 😉😄x
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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      #17
      Originally posted by Heather R View Post
      Isn't that good that they are waiting for you?? x
      Yes, I think it is, Heather - it shows understanding and respect (for me) x

      ​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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        #18
        I was writing a sentence yesterday on boogie board and the response I got was.....bloody hell net what you writing? War & Peace? 😤
        Janette x

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          #19
          Nettie You should get that person to use the boogie board, imitating any manual dexterity issues you have, and see how they get on.

          My family have all tried using my eye gaze, failed miserably 🤭🤭
          ​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
            Nettie why would you write war & peace? Someone's already done it. You are made for greater things.
            love and hugs Denise xxx
            when i can think of something profound i will update this.

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              #21
              Originally posted by Ellie View Post
              Nettie You should get that person to use the boogie board, imitating any manual dexterity issues you have, and see how they get on.

              My family have all tried using my eye gaze, failed miserably 🤭🤭
              Never thought of that 🤔 they did apologise after I gave them the “look” 🤣 x
              Janette x

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                #22
                Originally posted by denise View Post
                Nettie why would you write war & peace? Someone's already done it. You are made for greater things.
                love and hugs Denise xxx
                I’m surprised they knew about war & peace lol 🤣 x
                Janette x

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                  #23
                  I'm dreading being dependent on my SpeakUnique. Did I tell you I practised using it on my local mnda group zoom, and no-one understood what my unique voice was saying! Which isn't encouraging. It is quite quiet (and also posh says my daughter). SpeakUnique have tried making it a bit louder, and I am trying different volume amplifying microphones. Does anyone else have this problem with speak unique? And of course it is completely expressionless. What I dread is in an emergency trying to communicate using it. Your experience in hospital sounded horrendous, Matthew. (Haven't had my mental abilities tests results back yet, so if I have already said this to you all, you know what my results are likely to be!) x
                  Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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                    #24
                    I feel your pain Heather, and that time I resorted to an A4 note book and a pen. Good thing too as it turned out as a record of what I was trying to say. I could still make an official complaint but I'm not like that. As for speech apps I use Text to Speech which has rubbish voices but is free. I never got the SpeakUnique app to work. 😄👍x
                    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                      #25
                      Hi Heather,

                      Have you tried using a little speaker, bluetooth or wired, to amplify the output and would it help if the speech output were slowed down, do you think?

                      My PC speaker is loud enough to be heard on Zoom calls, but I also use the 'Chat' facility - I can have pretyped text which I copy and paste into chat and can be seen (and be understood) by everyone (if they have opened their chat box) I don't use SpeakUnique, just the text to speech facility in Windows.

                      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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                        #26
                        [QUOTE=Heather R;n45312]I'm dreading being dependent on my SpeakUnique. Did I tell you I practised using it on my local mnda group zoom, and no-one understood what my unique voice was saying! Which isn't encouraging. It is quite quiet (and also posh says my daughter). SpeakUnique have tried making it a bit louder, and I am trying different volume amplifying microphones. Does anyone else have this problem with speak unique?

                        Heather,

                        I use it and my voice was reasonable at the time of recording. As mentioned by Ellie I use an amplifier when “chatting” on zoom and I also slow down the rate of speech. I agree that there is no emotion but I have made several presentations to MNDA branches and the message has been understood.

                        Whilst speech apps help us to communicate nowadays if we go back a decade this was not an option. As suggested by Matthew, in a one to one scenario pen and paper or a boogie board may be best.


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

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                          #27
                          Originally posted by Barry52 View Post
                          I agree that there is no emotion but I have made several presentations to MNDA branches and the message has been understood.
                          At least you have a valid excuse for your (PC's) montone delivery - we've all been to presenations given by human automatons, haven't we 😄
                          ​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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                            #28
                            I can still write faster than I can type. Although I'd be lost without text to speech with phonecalls. 😄x
                            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                              #29
                              Sadly I had a style of presentation that people wanted to hear. Do I miss my voice more? I don't think I can. 😄x
                              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                                #30
                                Hi Heather and Matthew,

                                Heather, I sometimes use a small portable Boss Micro sound box strapped to by waist belt or in a pocket and connected to my iPhone app and it makes the voice very clear and as loud as I need it, several people have been very impressed how much easier it makes my voice to be understood.

                                Matthew, My voice app works on a phone call really well, I only really use it mainly to phone my wife when she’s driving or if someone rings me I have a few messages prepared to just hit the button's in response like, "sorry I can’t speak’ please phone back later or I can just listen to what you’d like to say” The app is the only ones I know of that can speak on phone calls. The apps are Proloque2Go and Proloque4Text. I use both versions. They are expensive but when I message them as an enquiry saying I have MND they gave them both to me FOC and they’re customer service and backup via emails is excellent.

                                Regards David

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