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Being Mute in 2021

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    Being Mute in 2021

    When you are unable to speak you are left with sign language, txt or written words to communicate with emoticons as emotional signals. If you are upset or nervous you find mistakes in communication caused by hitting wrong key or unintelligible writing. This makes you more upset so the problems get worse. This can easily be misinterpreted as aggression or intimidation. What is so sad is that I had to go through a frightening experience to realise this.

    #2
    Oh Matthew. My heart goes out to you. I'm sorry you had to go through that 😭
    lots of love and hugs Denise xxx

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      #3
      And I am forced to send or write a legal letter to not be misinterpreted.😠

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        #4
        Think about this: one woman tells a man she hates the man and immediately kisses him. The other woman tells another man she hates him and immediately slaps him. What did the two women do differently? Answers on a postcard. 🤔

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          #5
          As you say, Matthew, these other forms of communication can be even more easily misinterpreted, especially when you have with weakening hands and are feeling upset, which is why I suppose the muteness is sometimes called the worst challenge of mnd. And living on your own in this time of covid is especially challenging I find (but maybe better than being alone in an apparently hostile environment I suppose!). Do hope can get some help to resolve all this (patient advocate?). As you tell us, stay strong x
          Diagnosed July 2020, ALS bulbar onset.

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            #6
            If it's so easy to record a voice for people like speakunique then why not ask celebrities to read Sherlock Holmes? I would be a different person if I could use Denzel Washington as my voice. I'm biased but think they're called speakunique because you have to be unique to use them. 😉😁x

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              #7
              Forced as I am to only be able to use writing as my means of communication, my words are often missread and my original thought is lost. Take this forum as an example of this very thing, with people ignoring me for posts I have written. I'm judged by what I wrote. 😢

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                #8
                When we write we have the luxury of reading it back and considering what we have written. Then we have the luxury of choosing delete or post. The decision lies with us xx

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                  #9
                  I have just recently completed the 300 sentence SpeakUnique set up and they returned samples of my electronic voice which sounds weird.
                  Some things are lost in the translation and I believe this can happen when the sentence is typed. I have typed jokingly using the keyboard and it has been taken completely the wrong way. So important to read back what you typed and consider if that could be typed differently.
                  Diagnosed 2nd Jan 2020
                  Both arms/shoulders affected, left worse than right.
                  Progressive Muscular Atrophy suspected

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                    #10
                    I fully understand but if a mood lasts 24hours are we supposed to just be silent? 😢

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                      #11
                      Hi Matthew,

                      I agree completely with the difficulty of moving to apps or hand writing, mines progressed in the last few months so I can’t now utter an intelligible word, I’ve found this part of my MND the worse so far not being able to respond quick enough, miss typing and being totally misunderstood. I did a voice bank but gave up using my own voice because people didn’t seem to hear it very well so I’m now using British Graham, but even that doesn’t create the same expressions we would normally use, very hard.
                      I want to try and maintain as much independence as I can, Majority of people are very patient but I did have a really bad experience at my doctors surgery this week, they won't let us in without speaking to the door intercom! even preparing stuff like name and DOB on app was no good when they start asking loads of other questions like why are you here, any symptoms of covid etc, in the end as another patient exited the door I slipped in only to get shouted at by receptionist and told to go back out, tried to give sign language and played “I can’t speak” and she was still stroppy and ignored me, quite stressful and annoying. I put an official complaint in saying they need to re think it. Must be even harder for people who have lost their hearing.

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                        #12
                        How many times do we encounter the same ignorance of disability in every walk of life? It's enough to make one cry, oh, hang on, we can't do that either! 😉😄x

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                          #13
                          Even in a two way conversation, if one is using boogie board or other device, there are times when the other person is speaking that you want to respond to a point made. But they carry on talking. So as to not forget what to say one starts to write, or tap, a suitable response. Fine so far yes? Well no because the other person usually stops speaking waiting for your reply. Just one more thing to consider? 😄x

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                            #14
                            Isn't that good that they are waiting for you?? x
                            Diagnosed July 2020, ALS bulbar onset.

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                              #15
                              All my life I've been good at coming up with witty responses during a conversation. As you say Matthew, now I type away with one finger only for the conversation to have moved on by the time I've written anything. So frustrating.
                              Each day is made easier with a bit of humour.

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