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Living Mute

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    Living Mute

    Today I was lucky enough to experience both of only two types of people in my new life. The first type was my taxi driver, once I had signalled my muteness he responded with rudimentary hand signals and didn't speak a word to me the entire journey. The other type was the nurse, who I had never met before, who quickly caught on and chatted away as normal, asking me questions and joking. All that while stabbing me in my ear!
    I'm seriously considering having I AM NOT DEAF tattooed on my forehead. πŸ˜‰πŸ˜x
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

    #2
    I know that feeling Matthew and I hope in time we can get people to accept this disability and treat us normally.
    I’m going to do this even if it kills me!

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      #3
      Oh Matthew that’s brought back memories. Every medical person that visited always shouted at Ann whilst bending down and rubbing her hands as if she was not only deaf but blind as well. We used to laugh after they had gone.

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      • You would not get much sense out of 'em anyhow Matt, save your breath!

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          #5
          Couldn't you get some business type cards made. It might be enough to break the embarrassment some people might feel. I just don't think they know how to cope. The medical profession has no excuse but I'm surprised you found a taxi driver that could speak English. I've had taxi drivers that don't stop talking and others that don't say a word or keep up a long conversation with someone on their phone 😐
          when i can think of something profound i will update this.

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            #6
            Matthew, judging by your picture you are a rebel, get something printed along the lines of "Hey you talk to me, I'm not deaf or stupid" and make sure its large enough for people to see it.

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              #7
              Come the revolution brother πŸ‘πŸ˜x
              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                #8
                Carers you’d think are trained to understand but sounds like not enough training going on to cover basic communication skills. A shakeup of the care service is needed. Luckily I’m not in the position to need carers yet but I do fear the future because of all the worrying reports that I’ve read of peoples experiences with carers. Lynne
                ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                I'm staying positive and taking each day as it comes.

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                  #9
                  I still haven't made up my mind about whether I'm waiting for that stage, you lot will be the first to hear my decision 😁x
                  Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                    #10
                    I ordered some cards this morning so let's see eh? 😁x
                    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
                      Well it's worth a try at least you are trying to help a situation.
                      I'm not sure what kind of training carers get. Do some do some things like dress and feed and others do more specific jobs. I have no idea. Do you get what you want or do you just get what's available.
                      I seem to recall my mum getting help but it was a case of 10 minutes either help with dressing or feeding. It's a worry.
                      when i can think of something profound i will update this.

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                        #12
                        What did you put on your cards? 😎
                        when i can think of something profound i will update this.

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                          #13
                          In capitals I can't speak; I'm not deaf; I'm not stupid. 😁x
                          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                            #14
                            well if that dunt do it nowt will
                            Husband Albert diagnosed PMA Feb 21

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                              #15
                              Bless πŸ˜„
                              when i can think of something profound i will update this.

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