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    • #19860
      Pepper de Callier
      Participant

      I am at the point where I’m not easily understood and I would like to hear from people about what equipment they are using and could share some dos and don’ts about selecting the right equipment.

    • #19866
      Dagmar Munn
      Keymaster

      Hi Pepper, I’ve been living with this for several years now and am happy to share with you what I do to not only keep speaking with my own voice but have others understand me as well.

      About 6 years ago (5 years after the onset of my ALS), I began to have the “thick tongue” feeling and noticed trouble speaking – – slow words, breathy sound, and unintelligible as the evening wore on. Here’s what I did, and now 6 years later, I am still speaking.

      – I took the online course by voice coach Andrea Caban. And wrote about it here:“Dysarthria? Use These Innovative Techniques” I learned to redirect my breath from “upper chest speaking” to using my diaphragm, like an opera singer. This gave me volume, extended the number of words with one breath, and I was less tired speaking. I also learned to move consonants like “gah” and “kah” more forward in my mouth, and not in my throat.

      – I use the Talk-to-text app on my phone to speak to our Alexa. This relieves my frustration with voice-activated devices not understanding me.

      – When in a group, or riding in our van, I am heard above the noise by using a personal microphone. I wrote about it here: “Listen! Can You Hear Me Now?” and here: “Hooray! You Can Hear Me Now” Here is the microphone.

      – Everyday day I practice breathing exercises. I describe them here: “How Blowing Bubbles Helps Me Breathe” And I do a tongue warm-up plus mouth stretches like: prounouncing an elongated “EEE”, “KEUWW”, “EEE”, “ARRR”.

      When my voice issues began the ALS Clinic referred me for approval to use a Tobii eye software… but so far, I haven’t needed it 😉 Hope these tips help you! I’m happy to offer more.

      • #19896
        Pepper de Callier
        Participant

        Thanks so much!  All of the responses have been very helpful!

    • #19885
      Jim Knepp
      Participant

      Pepper – Like Dagmar, I also have a TobiiDynavox. I was very enthusiastic about it when I first received it, but the novelty ran out after about 6 months and it now just occupies space. I am still able to use my hands to type – OK, 1 or 2 fingers on each hand – and my speech pathologist suggested some apps for my iPad: I tried them and that they were too expensive or clumsy. I am not sure how I found Speech Assistant AAC (less than $12.00 in the Apple app store), but I have been using it for about 2 years. It is relatively easy to navigate, flexible, has a talking feature (which I don’t use as all of the voices [in my opinion] sound like a machine), has a screen view with large letters that the person that I’m “talking” to can easily read, and really “predicts” the next word well which saves typing. I showed it to my speech pathologist, and now it is #1 on her recommendation list.

    • #19886
      Dee Hagen
      Participant

      I really appreciate this conversation. Steve’s voice is down to a whisper, and that is even hard to understand with some words. Amplifying it won’t really help. He’s not interested in using a Boogie Jot board.

      Jim, I looked for the Apple app you use; Speech Assistant AAC and couldn’t find it. Could it be under a different name these days? Your help would be appreciated.

      • #19889
        Marianne Opilla
        Participant

        My speech is totally not understood by anyone, and I cannot write anymore.  I also use Speech Assistant AAC.  I just looked in the APP store it is still available.  It is annoying to use, but as good as it gets, and other people appreciate it.  As long as I can type I will use this rather than eye movement device.  By the end of the day communication is exhausting.

        • #19899
          Dee Hagen
          Participant

          Thanks Marianne. I realized I was looking for the app on my MAC. When I used my phone, I was able to find it quickly. It looks much easier to use than the text to speech app Steve is using. Looks like the price has gone up a bit but still very affordable for the convenience.

    • #19888
      Mike Leist
      Participant

      In addition to the good recommendations above, if you use a text to speech app, I would recommend using a Bluetooth speaker to boost the volume. I found one that was hand-size, and had a small loop. I then attached a carabiner clip so I could attach it to my belt loop.  I used that for about 3 years, along with carrying a boogie board. Once my hands lost function, I started using a Tobii Dynavox.

    • #19923
      Steve K.
      Participant

      I received the Tobii Dynavox months ago but haven’t used it much. You are basically on your own when it comes to training and figuring out the machine.
      The company  representative and customer care are the worst. They throw out a possible answer, untested, and you never hear back from them to see if it worked.
      I use the text to speech  Clarocom app on my phone. Works great

      • #19928
        Mike Leist
        Participant

        Steve, or anyone, I’m happy to help with Tobii training or issues. I’ve been using it for 1 1/2 years, and used to work both in information technology, and as a teacher. My only limitation is that I’m have lost my voice, but can speak through the Tobii. Also, a screen can be shared with Zoom.

    • #19924
      Pepper de Callier
      Participant

      Thanks so much.  Pepper

    • #19929
      Steve K.
      Participant

      Thanks Mike.

      • #19956
        Jim Knepp
        Participant

        Steve K. I agree that Tobii as an entity does not have good user support. However, my Tobii “salesman” has gone out of his way to help me. You may want to look on You Tube for videos by Chris Kovach. And no, I don’t get a kick back other than the satisfaction of hopefully helping another pALS.

    • #20096
      Marianne Opilla
      Participant

      My grandchildren understand Speech Assistant better than anyone. I guess they are used to electronic voices and have good hearing.  They enjoy the voices and laugh at it, making me say funny things, which is nice for me to get that attention from them!

      My friends are another story.  They don’t understand the voice, don’t have their glasses to read, and get impatient with my typing.  We had 3 couples visit last weekend and I finally gave up trying to be in the conversation.  The frustration was exhausting.

      My husband is getting used to it…finally…the learning curve has been long!  He patiently intreprets for me.

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