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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
      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.

    • #20816
      Ginger
      Participant

      Hi Pepper,

      I have very limited speech so I do use the speech assist app on my phone. I find it works great but when I’m home I use a whiteboard to communicate to my husband and friends that may come by. Texting using your phone is another way to communicate too. Hope this helps

      Ginger A.K.A Spice Girl

    • #20841
      James Bonner
      Participant

      I have Google docs on my ipad and my wife has it on  her iPhone. It has word prediction and

      as I type on my device the text immediately appears on hers. Often as I am typing she can fill in the rest of the sentence. So quicker than text to speech and no robotic voice.

       

    • #20867
      Nina
      Participant

      I really admire all of you.  So far, I have not lost my voice but I’m guessing that’s ahead. It worries and depresses me that I will have to adapt to all the equipment/software  you are talking about. I  just don’t feel like I’ll be able to do it. You all inspire me.

    • #21133
      Jan: CA, pals
      Participant

      This Thursday, December 16th, my Speech Therapist set up an appointment with a rep from Tobii Dynavox. Currently, I use a pen and notebook, dry erase board, “Notes” on my iphone and texting. I have not been able to use the telephone for most of this year. I manage, not easy… and sometimes I ask one of the nurses to make a “business” type of phone call for me. My big frustration is I cannot text as fast as a 15 year-old!

      I really don’t think I’m ready for a Tobii (and hope I never will be). I watched most of the Tobii videos on youtube; there were not many viewers, they were put out years ago and the comment section was turned off… which is a major red flag in my book!

      Your suggestions are all great, I will make a list of every recommendation and follow-up on them.

      Also, what about the cost? Does insurance pay for it? All of your suggestions are sincerely appreciated… thanks 🙂

      FYI: I am on Riluzole (50mg 2x) for this entire year (having a major problem swallowing)and look forward to taking the new oral film that dissolves on your tongue. Plus, Radacava over 75 infusions and have all the pinholes to prove it!

      • #21154
        GtrJim
        Participant

        See my post on the Tobii Dynavox eye gaze device. My wife uses the I-13 model. This was an upgrade from the I-10, which was covered by Medicare with her doctor’s order. We had to pay for the upgrade ($15,000). The Tobii is not perfect, but I would rate it a 7 out of 10 and the tech support is pretty good.

    • #21134
      Jörg Dimmeler
      Participant
    • #21151
      Karl Schachtner
      Participant

      I completely lost the ability to speak several years ago. My arms and hands still work well enough to write and type (hunt & peck only). I primarily use a boogie board to communicate. I don’t bother to use the stylus that comes with it, I just use my fingernail to write on the screen and with the push of a button, it erases. Much better than a white board and no mess.

      I also use a text-to-speech app on my phone but find it cumbersome to try and keep up with a conversation. I mostly use the app when I have an opportunity to “talk” to a group of people, and know ahead of time what I want to say so I have time to type it into my phone.

      Recently I discovered that I can make phone calls with an IP (internet protocol) Relay service. It’s easy, I’ve used it several times when my wife hasn’t been available and I didn’t want to wait for her. You can use the service with any computer, tablet or smart phone that connects to the internet. I guess it was originally created for the deaf population and the federal government requires/contracts phone companies to provide the service free of charge! T-mobile is the company that currently provides the service (you don’t need regular cell phone service with T-mobile). Basically when you use the service, you type what you want to say, then a relay operator speaks exactly that to the person you’re calling, the operator hears their response and types it, you read the response on your computer. You continue to type back and forth with the operator while the operator speaks with the person you’ve called. I like the feeling of independence when using the service.

      Cheers all! Merry Christmas!

    • #21153
      GtrJim
      Participant

      My wife was diagnosed with ALS in 2017. The ALS is slow progressing but she has lost speech and use of arms and legs. She uses the I-13 Tobii Dynavox eye gaze device, typing on the screen with her left foot, which still has some motion, rather than use the eye gaze feature, which she has found to be difficult to get used to. I have encouraged her to practice the eye gaze because eventually she will lose use of her left foot. The Tobii is her main form of communication and she uses it with her left foot throughout the day. She uses the Tobii for messages, email, text messaging, Direct TV and Apple TV (remote devices programmed in).

    • #21156
      Laurel Linton
      Participant

      I was diagnosed with als 6 months ago and was losing my ability to swallow when I was referred to the Deanna Protocol. It was developed by a doctor trying to save his daughter. She was given 2 years to live and it’s 12 years later and she is alive and moving. I have been taking this and my ability to swallow has returned and the disease seems to have stopped progressing.I am also on riluzole and going into the oral study for Radacava in January.

    • #21157
      David Crellin
      Participant

      Don’t give ideas. I have a 500 watt bass system from when I played fretless bass, and a 1,000 watt PA rig,90 watt accoustic guitar combo, wireless mics. Now after playing guitar from age 6 I can’t sing and cannot play instruments. Voice banking in January.

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