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    To talk or not.

    I'd really like some advice. My voice is so bad now that conversations particularly on the phone are just not working. Should I just give up trying and become mute a little early? What did you guys do? x

    #2
    Matthew,

    If I can’t contact a business by email or online then I switch, be it utilities or orders online. Many businesses have a “speech assistance” function which I use. My family only contact me by video link.

    Good luck with finding a method that works for you.

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

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      #3
      Thanks Barry I'm new to this! 😀

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        #4
        Ditto - I use the online Chat facility. It's usually much quicker than the phone anyway and you can take a shot of the conversation.

        ​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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          #5
          Tell me more.😀x

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            #6
            im refusing to give up communicating by voice. i spent 24 years enabling adults with learning disabilities to have a voice wether they had vocal abiltity or not. Im the same . i wont deal with any company who wont deal with me via email. my family and friends and carers have took the time to get to no me and have pataince to understand me. dont lose the ability to make sound

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              #7
              Originally posted by Hayls View Post
              dont lose the ability to make sound
              Unfortunately MND takes that choice away from the majority of us, we don't give up our voices willingly 😥😥

              ​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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                #8
                aww Ellie, can, 't you make sounds at all. I didn't know this could happen. How devestating. I'm not going to up willingly. doh. give up willingly.

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                  #9
                  I hello everyone. My partner used to have the kind of voice that I would ask him to lower... it was loud... now I can barely hear him unless I am next to him. Is there a progression from soft voice to no voice? Thank you for sharing your experience

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                    #10
                    In my case I started by sounding drunk and very soon after like a mentally injured person. Now only a few people can understand my words and even with them I have to repeat. I hate people who say yes to everything and the ones who think because you can't speak you must be deaf!🤨 Oh and I haven't been able to raise my voice for months, a real pain as I used to go to football and sing for 90 minures. Happy Days. x

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                      #11
                      Originally posted by Betty sitbon View Post
                      Is there a progression from soft voice to no voice?
                      Betty sitbon Not everyone will lose their voice but a high percentage of us unfortunately do 😥 The rate of speech loss varies, it took mine about a year to go from 100% to 0%, but everyone is different.

                      If he hasn't already spoken to his SLT about communication aids, now is the time.

                      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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                        #12
                        I have still got a voice. I find it frustrating that my husband asks me to repeat what I’ve said very often, but he’s always getting lots of wax in his ears making him a bit deaf sometimes and other times almost completely deaf. It’s a reoccurring problem for him. So it’s a double problem. I have a lower voice and he can’t always hear me.My MND neurologist last Wednesday asked me to slow down because had trouble understanding my voice. It gets more slurred if I speak quickly. Lynne
                        ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
                        I'm staying positive and taking each day as it comes.

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                          #13
                          My voice is just about on its last legs now very few people understand me now it’s so frustrating ☹️
                          Janette x

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                            #14
                            sometime i wish he couldnt speak, which i know is a horrible thing to say but sometimes...........! anyway i have heard you all speak of voice banking and i take it to mean that you record messages and then recall them by pressing a buttton. thats how i thought it went anyway. i know some people have done this and i have looked at the websites and that they are able to improve or fix the voice. so how much do these things cost? its just that it would be so embarassing to sign up and then it costs a horrible amount of money.

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                              #15
                              Denise, if Stephen does lose his voice, you would give anything to hear him talk again (even if it's a complaint!!)

                              I know you're in Portugal but ask his Speech Therapist or Doctor about voice banking and text to speech Apps. Have you made contact with the Portuguese equivalent of the MNDA? Here is their website if you haven't already got it: https://www.apela.pt/

                              There are several voice banking options - here is the pricing for one of them, Acapela: https://mov.acapela-group.com/pricing/

                              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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