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    Voice almost gone

    In the last week my voice has really deteriorated. Even Alexa ignores me! I have got used to silence, living alone and have been working from home since the start of the pandemic. I need to start using my SpeakUnique voice. How do people cope with this? I am fortunate to be fully mobile still so am able to go out and about freely. I use self service tills in shops where I can but how easy is it to use a synthetic voice in a shop, restaurant, etc?
    Bulbar onset diagnosed Nov 21. No speech, feeding tube, limbs getting weaker but still just about mobile.

    #2
    I was diagnosed with PBP in Jan 2018, I could speak but it sounded as though I was drunk. Over the following months my speech became unrecognisable. I have a wife so I have to get her to do phone calls etc. I just use a boogie Board to write down want I want to say. There are computer programmes which one can use, but I appreciate in your position, living on your own, you don't have the benefit of someone conveying your message for you. My first Boogie Board was provided by the NHS. However they can be bought on Amazon for ยฃ8-10, but buy one first to test as some are pretty crappy. I now have 6 Boards ,one in the car and the others in various rooms in the house. I know this doesn't answer your question but I hope it might be helpful.

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      #3
      I'm sorry your voice is almost gone Hope , there's no sugar coating that, for those of us who lose our voice, it's usually the most challenging aspect of MND.

      Originally posted by Hope View Post
      How do people cope with this?
      Because communication is such an integral part of being human, we kind of have to cope as best as we can and find alternative ways of communication, otherwise we're rightly stuck.

      If people can hold a pen, they can write in retail situations, if not, they can use text to speech apps, or both. It is terrifying at first but, in a 'needs must' way, there really isn't a choice...

      On a side note, Alexa understands my PC's synthetic voice ๐Ÿ‘๐Ÿ‘

      Sending you a hug because I know how you feel ๐Ÿค—๐Ÿ˜˜
      โ€‹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
      .
      โ€‹

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        #4
        Stonehengeman thank you, that is really helpful as I had not considered a Boogie board. i will look into that.
        Bulbar onset diagnosed Nov 21. No speech, feeding tube, limbs getting weaker but still just about mobile.

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          #5
          Ellie thank you, yes I think I just need to get my head around โ€˜needs mustโ€™. Alexa does understand my synthetic voice so she isnโ€™t all bad! โ˜บ๏ธ
          Bulbar onset diagnosed Nov 21. No speech, feeding tube, limbs getting weaker but still just about mobile.

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            #6
            When my voice first went I used boogie boards, then when my hand became too weak, I swapped to txt to speech apps. Soon I will be using a mini swipe pad with a Windows backed computer. Living alone I ditched phone calls early. Sure it's scary but I make more noises now than I did as a talker. ๐Ÿ˜ณ๐Ÿ˜๐Ÿค—๐Ÿชxx
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

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