• Maribel Lopez-Cepero

    Member
    June 23, 2023 at 12:13 pm

    Good Morning,

    My husband has been using the Tobii Dynavox 16 for the past 7 months. It has been amazing. The training was not the best one, but he watched a lot of videos in YouTube, google information and thanks God he became a PRO. Unfortunately, he has a tracheotomy done and this equipment is helping him, us and the medical home care team a lot. He does everything with it, banking, emails, WhatsApp, News, Netflix, etc. He is very independent and somehow happy.

    God Bless you all,

    Maribel

  • Alan Larrivee

    Member
    June 23, 2023 at 12:56 pm

    One year ago when I was diagnosed I was slurring my speech mostly towards the end of the day. I was encouraged to see a Speech and Language therapist and am lucky enough to have a University in my home town that has a department for that. They started me right away with Voice Banking. They referred me to the fine clinic at Boston Children Hospital. They set me up with Acapela group and now I have a voice that really sounds close to what I used to sound like. As now I can’t speak without talking slowly and quietly and it is very difficult to understand me, I am so grateful for the SLPs in my life.

    • Dagmar

      Member
      June 25, 2023 at 4:46 pm

      Alan, have you been doing anything to preserve or improve the speaking ability that you have right now? Many SLPs don’t offer tips to improve how you speak and (to me) push patients too fast into giving up and depending on AI equipment – – but they do know how to help patients – – they teach stroke patients the same techniques.

      • Alan Larrivee

        Member
        June 25, 2023 at 7:50 pm

        Dagmar I’m sorry that you haven’t had the experience that I have had with SLPs. My first experience was being encouraged to develop strategies on how to help myself be better understood. That SLP taught me “breath stacking”. This is one I use a lot.

        Another helps me with breathing. She set me with an Aspire (The EMST150 Calibrated Expiratory Muscle Strength Trainer) and an adapter to exercise inspiratory muscles. She also gave exercises using a drinking straw. Humming and reciting with your lips around a straw isn’t easy but helps some.

        Another who set me up with Acapela has not been pushing it. It’s there for when it becomes necessary. One gave me a voice amplifier for when I’m really soft.

        I do have to face facts that my bulbar ALS is aggressive and all the breath training won’t stop the inevitable conclusion.

        I am happy that I have had so many intelligent and caring SLPs during my journey.

         

  • Ed

    Member
    June 25, 2023 at 7:11 am

    Hi Len. They calibrated the machine for my needs and suggested I begin by using the machine twice a day, once in the morning once in the evening. There are 5 sets of 5 repetitions morning and evening. It takes very little time, a couple of minutes depending on how long you rest between sets. I have not been resting but maybe 5-10 seconds. Talk to your RT about it. Best wishes. Ed

  • Deleted User

    Deleted User
    December 27, 2023 at 11:34 am

    <div>This is relatively new:</div>

    Brain implants give a voice to people who cannot speak (ft.com)

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