Day #6:
If you’ve followed along with my posts the past few days, you know that there is no cure for ALS. That being said, I think there have been significant advancements in technology over the last 20 years that allow a person living with ALS to have some kind of independence and ability to communicate. Specifically, I want to talk about Voice Banking and Eyegaze technology.
Shortly after I was diagnosed with ALS, I began the process of voice banking. This entails using an internet software to record a series of sentences with the goal of capturing the normal sounds of your voice. The software then converts your voice into a synthetic voice that can be used to communicate, since all people with ALS eventually lose the ability to talk. It isn’t perfect, but it’s better than nothing.
Eyegaze technology uses an infrared light and camera to track the movement of your eyes (by the reflection of the retina). This is life-changing technology. With my eyegaze, I can type words one letter at a time, and then use software to speak using my synthetic voice. I can also use my eyegaze as a mouse to surf the Internet, compose emails or Facebook posts, use online banking, pay bills, and pretty much anything else you do on a computer. However, I do miss my iPhone!
These two technologies combined make a huge difference for someone living with ALS. It has been said that until there’s a cure, technology is the cure. I honestly believe that, and I’m grateful for it
#ALSAwarenessMonth #HopeIsNeverLost #GratefulToHaveAVoice
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| (Oct 2017) Cambrie Nelson and Cheri Johnston are our voice angels. For weeks, these two ladies watched our littles for hours so we could crawl inside of our closet and hide day after day. Jonathan and I spent MANY hours recording his voice. We set up two chairs in our closet crammed with clothing and then covered ourselves with blankets. We turned out the light and eliminated every accessory sound possible. Using his high quality aviation headset, we recorded him speaking 1,600 phrases. It took many hours. I ran the computer and started and stopped the recorder after each phrase. Jonathan sat and read aloud. We would have to go back over each phrase and make sure it sounded accurate and was recorded properly. We established a rhythm of him taking a deep breath, me prepping the recorder, prepping the phrase, him speaking and me stopping the recorder. The rhythm worked well... but it was MONOTONOUS, and dark, and warm, and there were blankets piled all around. And there were several occasions Jonathan would draw a deep breath, and the person in charge of starting the recorder missed her cue - well, because she had entered a coma and was sound asleep sitting straight up. BUT WE PERSEVERED DANG IT. And with the assistance of the company, Model Talker, Jonathan now has a synthetic voice. Looking back I wish we would have started the process sooner. He was loosing the ability to pronounce the "d" sound at the ends of his words, but by in large we captured the authentic sounds of his voice. It really is quite incredible what we can do. |
Here is a video of a presentation Jonathan gave to Andrew's elementary classroom last year. He typed the presentation with his eyes and used his synthetic voice to share it.
This man is kind of ridiculously awesome with his eyes. He has become a master of all things retina activated. Any man that can file an entire income tax return multiple years in row with the SOLITARY USE OF HIS EYES is my kind of man. He absolutely knows no boundaries. If someone is going to figure out how to do something well, regardless of circumstances, it is this man. Oh, how I love him.
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