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Life with no voice

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    Life with no voice

    As my voice has gone now ( I know what I want to say but open my mouth and alien sounds come out), I am really struggling with communication. I’ve always enjoyed humour, wit, spontaneity, but all of that has gone now 😞. I have the Predictable app but whilst it can be helpful, it isn’t quick enough for all the things I miss. I also write things down, but again, it’s too slow for all the things I mentioned above.
    I feel that after a short time people unintentionally exclude me from many conversations.
    Is eye gaze technology quicker than typing out on Predictable?
    Does anyone out there have any suggestions or ideas that might help? I know this is a common problem with MND but wonder how others cope.
    Thanks for reading. Lizzie x

    #2
    Hi Lizzie, I will be interested in finding out if there is a better way other than predictable App.I can still speak but voice is weaker.I have been practicing the predictable app.It does seem slow though.Do you use predictable on phone or iPad?
    Mine is on iPad..meaning I will need to take iPad wherever I go whilst I can hold it as hands getting weaker.
    I shall be watching replies to your post to see how others manage
    Best wishes
    Mary

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      #3
      HI Lizzie

      So sorry you are experienceing this.

      As a nurse in the stroke ward (many people lost their voice), to have a good conversation, the person with the voice needs to be at eye level.
      Aware of body language, facial expression.

      Having a casual conversation, my husband can speak his frustration is that people don't sit down, they tower over his chair.
      Even though I tell them to sit.

      we position the chairs in front of the bed but even the nurses move them behind.
      Which hurts his neck.

      Can you use your hands?
      Husband has lost all movement there and he used to use hand gestures to communicate when tired.
      Basic sign language if you can.

      Husband feels that people ignore him and talk over him, even though he can still speak. But it is an effort.
      We had visitors on Sunday, I felt they struggled to connect and were uncomfortable with visible illness.

      I have found I lot of comfort on Facebook groups, typing I know. Rather than speech during lock down. For myself.
      Husband was given an option for eye gaze to type. He finds this VERY slow way to communicate, the OT refered him to telecare and communication, for this it was free to us.

      He has a big button to press with his foot that rings a pager,
      I carry if I am up the stairs (this has been hugely successful, as he sometimes can't speak loud or shout.

      Some Apps can hold whole phrases I am told, so someone could programme some standard phrases in that you can use.

      I don't feel that I have helped much but I wanted to reply so you know you were heard.

      Stroke can cause Aphasia, problems with speech, writing, typing and words in general.
      Maybe a search under that would give soluations from another condition.



      All the best

      Donna

      Carer for Husband, diagnosed MND in July 2020
      Symptoms with balance and grip for 2 years prior

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        #4
        Hi Lizzie, I have the same problem you do lose the wit and spontaneity of a conversation, I struggle with not being able to communicate with the smaller grandchildren when I can’t even say their name they look at me as though I’ve got two heads bless them, I use basic signs with hubby for things like turning lights on etc but I try first to speak if they don’t get it I write it down and usually have a laugh about it love Janette x
        Janette x

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          #5
          Originally posted by Lizzie View Post
          ... I feel that after a short time people unintentionally exclude me from many conversations.
          How I got over this: yes, it happens to us all - even Stephen Hawking complained about it, which made me feel better 😏 - I asked all my friends and family to wait until I typed, using an analogy of waiting for a person with a stammer to say what they had to say. Of course not being able to speak changes the spontaneity of chat, but it doesn't have to change your wit, humour, nor personality.

          Before visitors come, I usually have bits pre-typed, allowing me to highlight what I want to say at pertinent times and, when I type anything else, they wait.


          Originally posted by Lizzie View Post
          Is eye gaze technology quicker than typing out on Predictable?
          Eye is very user dependent and has variable speed settings, i.e., it's as good as its user. Whether it would be quicker for you to use than Predictable, I can't answer that as I don't know how fast you are!

          I actually free type more often than I use predictive text, as I find it quicker, but I have my dwell time set to minimum.

          Love Ellie.
          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

          Comment


            #6
            The term Dysarthia is used to describe loss of speech in MND - it's caused by a mechanical issue rather than a brain injury, as in stroke. xx
            Last edited by Ellie; 6 July 2021, 18:23.
            ​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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              #7
              Ellie

              Good to know the proper terms.
              Thanks
              Donna

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                #8
                I too have dysphasia and I have a few questions:

                1. What is Predictable?
                2. Does anyone else find that when you convey the fact that you can’t speak to a stranger, they immediately assume that you’re deaf as well and start miming?
                3. Has anyone had any sign language training? As my husband and I are both linguists and BSL is a language, I thought we could both benefit from learning some signs to ease communication. I asked my speech therapist if she could help me choose either an online or local course because there seem to be a lot of them out there and some are quite expensive, but she rather pompously told me that ‘we don’t recommend sign language for patients with MND. You should mime what you want.’ Well as an experienced teacher of English as a Foreign Language I’m quite good at miming to convey meaning, but it doesn’t help you to have a proper conversation. I know what she’s thinking - you won’t live long enough to benefit- but I’ve got news for her. I’m a very fast learner and if she’d put me on a course at the beginning of the year when I first asked, I’d be well on my way by now. So has anybody with a less negative care team done a sign language course that they could recommend?

                Comment


                  #9
                  Hi SallyAnn,

                  1. Predictable, a multi-award winning Augmentative and Alternative Communication (AAC) text-to-speech app. Using a smart word prediction technology, the app makes speaking out a text-based message easy - or so says its sales pitch.

                  It can be provided by your SLT or they can refer you for an AAC assessment - have you not had one? (or maybe your SLT is sniffy about this too 😖😖)

                  2. Yes, this happens universally.

                  3. Sorry no, my hands were first to go.

                  Love Ellie.
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                  Comment


                    #10
                    No, Ellie, I haven’t been offered an AAC assessment. I have banked my voice on the recommendation of the SLT with a company called Speak Unique, but as I have said elsewhere, I was dissatisfied with the result. It sounds like I am always grumbling, doesn’t it, but in fact I’m not a grumbly person. I just don’t like being fobbed off by health professionals trying to make me comply with their ‘one size fits all’ policy.

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                      #11
                      You're right SallyAnn, you should not be fobbed off... Ask for an AAC Assessment. xx
                      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                      Comment


                        #12
                        Lizzie and all others: I too have been excluded from conversations because people don’t look at me to see that I’m speaking, albeit quieter than a noisy room requires. I’ve been secretly upset by this several times. Even my husband hasn’t adjusted to having to wait four me to finish what I’m saying. He frequently answers me before I’ve finished speaking so my meanings aren’t delivered nor understood. Very frustrating. Slow to learn. Lynne x
                        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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                          #13
                          Thanks all for your replies and suggestions. It’s good to be able to share with others who really understand . 😊
                          Lizzie x

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                            #14
                            Hi SallyAnn, I too banked my voice with SpeakUnique, the £250 very kindly paid for by mnda, and was very disappointed with the result. The voice produced did sound a bit like I used to, but it was very quiet, and when amplified was very unclear. I am told it is a new app and they are trying to improve it, and I have given feedback. So I am now trying to find a better app, and haven't tried Predictable. Jabberwocky is free, and I find the female voice is a lot clearer and not so monotone, but as far as I can see the ability to save useful sentences is very limited. It does throw up a lot of predictive words, though, when you are typing. Someone on this forum mentioned Speech Assist, and I just found this funny introduction to this app, actually done by someone who is signing (but with subtitles),
                            https://www.youtube.com/watch?v=ymse9X8djv4
                            It costs £17.99p, and I am trying to get it on the iPad I have been given (lent), to see if it is better. So great to compare notes, as having the best way of communicating is so very important, isn't it?? x
                            Diagnosed July 2020, ALS bulbar onset.

                            Comment


                              #15
                              By eck, in the olden days, back in '08, when I was diagnosed, we didn't av all this fangled technology. Voice banking! AAC!!

                              The kids these days don't know that they are born!


                              Act-u-wally, I am looking forward to the next few years where I have a cortex interpreter.

                              https://www.youtube.com/watch?v=8e1xvyTdBZI
                              Copyright Graham

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