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    Harsh reality

    Only those of us will get this but one of the worst things about being mute is being excluded from conversations. By the time I have typed or written my opinion the conversation has moved on. Truth is always hard to take. 😞x
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

    #2
    I understand your frustration Matthew. I friend of mine, who I only met because of MND, had lost her speech before I met her. Whenever we met up, especially in group settings, people would talk to her but before she had typed her reply into her computer their attention would have often drifted away to another conversation. It used to really annoy me. I used to make a special effort of talking to her and wait patiently for her reply. I’m lucky (lucky πŸ˜€ yeah right) in that I still have my voice. I never knew what her voice was like. Sadly she passed away in August.
    Sporadic MND/ALS - Limb onset - Diagnosed May 2016
    night time NIPPY, cough assist, PEG (not currently used)


    Today is the tomorrow I feared yesterday

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      #3
      This is yet another example of the general ignorance of disability we face. Not you obviously. 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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        #4
        I don't think it's just not being able to speak but something else I noticed. Waiting at the reception area, especially with all the covid protection in place, there was a lady in a wheel chair. Unfortunately she was below the area of the reception desk. The guy behind the counter was ignoring her and talking to me. Because my Portuguese is useless I had to keep pointing down to her before he got what I was talking about. I find I get a lot of rudeness because I don't speak the language so also get ignored. Think you have to make a fuss then they can't ignore you. Wave a flag, burst a balloon. 😲

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          #5
          I've always thought that in couples (i.e. two adults) there always seems to be a quiet one and a chatty one. Lots of the couples I know fit this pattern. Unfortunately, I'm the chatty one and finding it extremely frustrating not being able to say my bit. I'm just about to take delivery of a new tablet so I can finally use my banked voice. If I get ignored too much, I'm going to play it through the Bluetooth speaker and drown them all out.
          Each day is made easier with a bit of humour.

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            #6
            It's one thing to choose not to speak but quite another not being able. Good luck and bon chance my friend 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
              Yes the lack of clear speech annoys me and the impatience of some people. I have the sound of a claxon on my speech app which usually gets their attention. Another thing that irritates me is when people address someone in a wheelchair and they are standing fully erect. Although I am not a wheelchair user I think it is good manners to sit at the same level.

              One may say we have come a long way to recognising disability but I would argue there is much further to go.

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

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                #8
                What I hate is when I signal that I can't speak people automatically think I'm deaf and stupid as well. 😠
                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                  #9
                  Originally posted by matthew55 View Post
                  ... people automatically think I'm deaf and stupid as well.
                  And, if they deign to actually speak to me, they speak to me as if I were a 3 year old 🀬🀬

                  (mind you, I soon set them straight 😜)
                  ​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
                    This is why I check the forum so many times a day. It's the only place that I can have a grown up conversation. πŸ˜ƒx
                    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                      #11
                      You must be sadly disappointed most days so 🀣🀣
                      ​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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                        #12
                        Yes since my speech has been going, I really notice a change in attitude from some people. Mind you I have been a bit deaf all my life so am used to being presumed stupid, but if they think you're drunk as well...
                        Diagnosed July 2020, ALS bulbar onset.

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                          #13
                          I think losing my ability to speak has been the hardest thing. You lose a big part of your identity. For me, communication was at the core of my profession and β€œwho I am”. Now, with peopleβ€˜s impatience and pre-conceived attitudes to disability, I feel as if I have lost a big part of my personality. I can see I’ll have to find new ways of asserting myself! Any suggestions??

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                            #14
                            I will sleep on it πŸ˜ƒx
                            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                              #15
                              Originally posted by matthew55 View Post
                              What I hate is when I signal that I can't speak people automatically think I'm deaf and stupid as well. 😠
                              Totally agree matthew55. I can't seem to get people to understand how frustrating it is not being allowed to contribute to a discussion. Certainly an eye-opener this becoming disabled lark. I loved conversation with friends and now say more to them on WhatsApp than when we meet in person (rare though that is). That ability will probably be taken before very long.
                              Each day is made easier with a bit of humour.

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