*UPDATED January 2019 – Eddy passed away from ALS in early 2019. Until this death, he worked tirelessly to raise awareness of ALS and mobilize others to support the cause, using social media and his personal website, to connect with people near and far.
Imagine waking up and trying to turn on the lights, but you can’t lift your arms. How do you change the channel on the TV when your fingers don’t move? What would it be like to be unable to adjust the thermostat when you’re too cold because you’re living with a disease that has left you paralyzed? These are just a handful of the everyday challenges that someone affected by ALS will face at some point throughout their progression but today, we have technology that’s available to help break through some of these obstacles.
Voice-activated digital assistants such as the Amazon Echo and Google Home are becoming increasingly popular in homes around the world for their convenience and ease of use. But for someone living with ALS, these technologies can mean the difference between independence and relying on others to perform simple everyday tasks.
Using eye-gaze technology to control his Amazon Echo, Alexa, Eddy Lefrançois has regained the autonomy he lost when ALS took his mobility and speech. The last time Eddy was able to turn the lights on by himself was 17 years ago, and even then, he remembers doing it using his head or shoulder. Today, with the help of his assistive technologies, Eddy has written an article he hopes will help other people living with ALS reclaim the “small life privileges” that ALS takes away.
Eddy’s story
I am writing this article with my eyes, sitting comfortably in my power wheelchair as I watch the baseball game. My eye gaze technology helps me communicate on my own, using light and cameras to track my eye movements and turn them into clicks on my computer screen. For years I was unable to express myself because only certain people could understand my weak voice. Since receiving this technology, I no longer need someone to stand beside me to translate my body language, a sense of freedom I hadn’t experienced in a long time.
Recently, I connected my house to Alexa, a cloud-based voice service that, combined with my eye gaze, allows me to turn the lights on and off, control the thermostat and change the channels on my TV. Now, even though I have lost complete use of my hands and fingers, I can text my friends and family using Remote Phone Call and Call Center apps, both of which connect via Bluetooth to my eye gaze and Alexa. What’s more, an app called Vysor mirrors my cell phone on a computer screen, allowing me to use mobile apps.
Technology has even helped give me peace of mind during the night. In my bedroom, a baby monitor is connected to the internet so that my siblings who live a few blocks away can see and speak with me on their mobile devices in case of an emergency.
Over the past 26 years, I have learned to ignore when I am hot or cold. I have learned to accept missing my favourite TV shows and living in the dark, literally without lights on. Thanks to my new technologies, I am no longer forced to live against my will. ALS, you won’t have me that easy!
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