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    • #22498
      Jim Cowgill
      Participant

      Communication is one of the biggest challenges for pALS (persons with ALS). This impediment is further exacerbated if you are male and naturally lack communication and listening skills. Don’t feel guilty, my knuckle dragging brethren, science has proven that our y chromosome essentially blocks any ability to maintain any coherent conversation. Fortunately, there are technologies readily available and emerging ones that facilitate communication. One such promising technology is augmented reality.
      I have bulbar onset ALS. Only the elite, 25%, get this variety. Bulbar comes from the Latin word volare which loosely translates to “you’re screwed” or crappy car made by Plymouth in the 1970’s. What this meant was that I would lose my ability to speak and swallow rapidly, so developing communication strategies was essential.

      First Step
      Start voice banking now! Over 80% of pALS experience significant speech impairment or complete loss of the ability to speak. This is as easy as putting a small, digital recorder in your pocket and recording everyday phrases you say. These recordings can be used by companies like Acapela to create a synthesized voice that can be used in a speech generating device. On my device, I use my recorded phrases along with my synthesized voice which makes celebrating or booing my beloved Dolphins more authentic. The Speech Pathologist in your ALS Clinic will help you get started. Dr. Lauren Tabor Gray, Co-Director of the NSU ALS Clinic in South Florida, is an expert in this field.

      Low High Tech
      As I was losing the ability to project my voice, I used a simple, free Text-to-Speech app. It was effective in one-on-one conversations. Of course, this is only possible if you have finger dexterity. As the disease progresses, your communication strategies must evolve.

      Material Girl Solution
      For larger groups, I used a personal amplifier, complete with hands-free microphone.

      The Surprisingly Effective Neanderthal Approach
      Nonverbal cues continue to be effective and quick ways to communicate as long as the recipient of your subtle gestures has a primary education. Eye blinks are the fastest means to respond to binary questions. One blink is “yes,” and two blinks is “no.” Although most of the time this complicated system works, sometimes people will not wait for me to process and respond to the first option before moving to the next thing. Another common mistake is asking me either or questions, such as do you want to wear this or that? How do you answer that with a “yes” or “no”?!? And if I get something in my eye, the whole system breaks down with the other person frantically saying, “yes, no, yes, no, yes, no.” Then there’s the three blinks which means “up yours.” I probably don’t use that as much as I should. Finally, there’s pointing at things with my eyes. Nonverbal communication can be quick and effective, but sometimes it’s like playing charades with a partner who keeps yelling the same thing.

      Assistive Technology For Communication
      My primary mode of communication is a system comprised of a Surface tablet, an eye gaze reader, a Bluetooth speaker, and software. The reader, a PC Eye 5, the latest from industry leader Tobiidynavox, works indoors and outdoors. Also, it is able to scan eyes at various angles. Prior models were unable to operate outside and required exacting alignment with the user. These are huge improvements.
      The two essential apps I use are Communicator 5 and TD Control. Communicator 5 allows me to type with my eyes and project my synthesized voice over a speaker. TD Control enables me to control the Windows-based Surface tablet. These technologies empower me to do so much of what I did prior to my diagnosis.

      However, they are far from perfect. The software cannot provide the nuances or emotions of natural conversations. Often, by the time I respond to something, the conversation has moved on. It’s really difficult to be a smart ass when your comment is five minutes late. The organic rhythm of conversation no longer exists, and I find myself responding in a series of soundbites to keep pace. Then it’s difficult to see the person I’m talking with because the table blocks my view. Finally, I succumb to “shiny object syndrome.” With a tablet in my face sending seductive news, email, texts, and social media notifications, it’s really hard to be truly present.

      Augmented Reality
      I must confess I did not know or perhaps did not care what Augmented Reality was. My son, the technology professional, who loves solving the entire family’s tech issues, especially his grandfather’s reoccurring problems of forgetting his 1234 password and how to access to his iTunes account that holds his precious Village People albums, explained it to me. Augmented Reality enhances the real world by adding interactive computer-generated information. Don’t feel bad, I still didn’t quite get it until he told me it was like Pokémon Go.
      Through the NSU ALS Clinic, I was connected with a brilliant, young engineer whose firm, Abiitaire, is developing a communication solution using Augmented Reality Glasses. I tried on the prototype and immediately saw the potential. A keyboard is projected towards the bottom of the glasses. Within minutes, I was proficiently typing messages that sounded over a speaker.

      Initially, I would use the AR Glasses in social settings. The Glasses will allow me to see the people I am conversing with and the surrounding environment instead of my tablet. It will also keep me engaged and free of distractions. We go out for a family dinner each week and I can’t wait to use the Glasses to see my family’s faces and being able to talk with them. I would also use them on neighborhood walks, excursions, and watching TV. An unobstructed view and the ability to communicate, what a luxury!

      Pilot Program
      Abilitaire is seeking candidates for a Pilot Program. Participants will help the engineers develop product features. You can learn more about the Pilot Program and register at https://abilitare.com/pages/beta-program-for-next-gen-speech-device?_pos=1&_sid=a6fbd24da&_ss=r.

      Please visit my blog, BetterLivingWithALS.com, to read upbeat stories about the lighter side of living with ALS. The blog was endorsed by Humorist and NY Times Best Selling Author Dave Barry. Also, I have been rolling out ALS Product Reviews on items that can make our lives easier. You can follow me on Twitter @betterlivingwithals. I hope to hear from you!

    • #22509
      Dagmar Munn
      Keymaster

      Thank you Jim for this detailed and informative post!

      A couple of questions for you…

      Regarding voice banking, I never was convinced that the effort of doing all that recording was worth the outcome. It seems most pALS (you included?) use the synthesized-you-voice for novelty applications. With the proliferation of computer-generated voices like Siri, Alexa, voice mail, and OnStar to name a few, it seems the world has grown used to hearing these voices, and having a perfect double of my voice emanating from a device – – is not necessary anymore. Never-the-less, speech therapists everywhere push voice banking as if it’s a panacea.

      Why I wonder don’t they instead teach simple voice skills and strategies to help their patients continue to use the voice they have? Controlling the exhale, using the diaphragm, changing voice pitch, and moving consonants forward in the mouth all have helped me to continue speaking 4 years beyond when my voice became affected by my already present ALS. Were you ever offered these options?

      Also, augmented reality sounds wonderful and intriguing. Thanks for sharing the website. However, when I tried to sign up for the demonstration the site mentioned that I would have to pay. Do you know if they give free demonstrations or require an upfront payment?

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