Innovation

With Not Impossible's technology, ALS patient says 'I love you' for first time in 15 years

Don Moir has ALS, and hasn't been able to speak for more than a decade. Not Impossible Labs gave him his voice back using a special keyboard and open source technology.

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With the help of Not Impossible's open source technology, Don Mois, who has ALS, can speak after 15 years.
Image: Not Impossible

Don and Lorraine Moir were married in 1989. Over the next six years, they had three children together and spent their days happily living in London, Ontario. Then, Don was diagnosed with ALS, or Lou Gehrig's disease, a progressive neurodegenerative disease that weakens muscles and impacts physical function.

By May 1999, Don was on a ventilator. He hasn't spoken a word since.

For the past 15 years, Don has communicated via a letter board that Lorraine made, which has the alphabet divided into four quadrants so she can track his eye movements to figure out what he wants to say.

Lorraine visited with researchers a couple of times throughout the past 10 years to try to come up with a better solution, but the devices they had were bulky, frustrating, and inefficient.

One day, while in the car listening to the radio, Lorraine heard Mick Ebeling, founder of Not Impossible Labs, an organization and community dedicated to creating technology for the sake of humanity. She contacted him about her husband's circumstances.

"Don and I wanted to help Not Impossible and Javed out," Lorraine said. "We were happy to be the guinea pigs as a part of creating something that could potentially help others, and in the process something that would work for Don."

Javed Gangjee is an engineer who saw Mick Ebeling's TED talk in 2011, and immediately resonated with his message: "If not now, then when? If not me, then who?" He had met Lorraine before, and when he heard about Don's dilemma last year and that she had contacted Ebeling, he knew it had to be him to fix it, and it had to be now. He volunteered to help Not Impossible with the project, completely outside his day job as lead engineer at SpeakYourMind Foundation.

"From then on, building the device went from being a fun hobby to a fun responsibility. It's been pretty easy to get out of bed in the morning since," he said.

When Gangjee visited Don the first time, he went with an openly available program that he said most people would be able to figure out in a matter of minutes. Don tried it out and said through his letter sheet, "I'm sorry Javed, I don't think I can do this."

Don had lost his ability to move in 1999, right around the dot com boom. He was very sick for years before that. He missed out on the internet age and the smartphone era. He had no idea how to use a computer because he had never touched one.

Gangjee told him to give him another chance — he could make something work. He had no idea how he would make it work, but the mantra of Not Impossible is committing to fix a problem, then figuring it out.

"When I went back to the drawing board, I was really frustrated, but I knew that the only way I could come up with an answer was if I forgot everything about the technology geared towards the rest of us," Gangjee said. "I got to know him and imagined myself in his shoes, as unimaginable as that [was]."

He realized that the only way to make it work was to use the abilities Don had. Instead of forcing something complicated on him that would take weeks or months to learn, he replicated the way he has spoken for the last 15 years: that letter sheet, digitized.

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Lorraine using the letterboard for Don.
Image: Not Impossible

The team found a low-cost eye tracking device, intended for gaming. Gangjee used the SDK to create a mouse control program that had the freedom to control the smoothness and speed of a computer cursor, and it allowed him to adjust the settings to suit Don's abilities.

"The user interface was the real problem, because at a certain point you hit a plateau in performance. A process of trial and error followed," Gangjee said. "I started off with a prototype and six iterations later, I heard those magical words from Don, 'I like it.'"

The project was a collaboration with the SpeakYourMind Foundation, a nonprofit organization that creates and distributes communication technologies for people with neurological injuries or disease (they put together an autocomplete feature for the keyboard). Not Impossible also worked with HP, which offered its HPx360 Convertible PC as part of its #BendTheRules campaign.

When he used the letterboard, she was the intermediate — Don had to use Lorraine as a voice to speak to her and others. With this device, she is no longer the in-between for Don's communication. He can communicate independently, and there is a verbal voice relaying his thoughts. Lorraine said it has opened up the possibilities for him to email farmers for the couple's business, and email friends on his own.

Over the last 25 years, Lorraine said Don has always been sentimental and loving — they were always affectionate with one another. Soon after the Not Impossible team taught Don how to use his keyboard, he wrote a love letter to Lorraine using his eyes, which was then spoken through the device.

"He had to practice writing the letter with me, so when he actually wrote it it wasn't a surprise! But it was really nice to audibly hear it," Lorraine said.

"Don is so excited about the possibilities that it opens up for him. He is excited to talk to me, his friends and kids more freely," Lorraine said. "And he doesn't have to depend on me to do it. I will be able to drive and do the dishes and have a conversation with him."

Don's keyboard is only a small part of a much bigger project, Gangjee said. People like him slip through the cracks, and need answers similar to this one. The team at SpeakYourMind is currently building an open sourced UI platform called SYMple that they hope to release later this year, and want to make it easy for caregivers to build UIs like it quickly.

"We hope to make the API robust enough that our Not Impossible volunteers can tie their own devices into the program, expanding the scope and reach of the project," he added.

The device is still a work in progress, so Lorraine said it hasn't changed the way they communicate on a daily basis yet, but it is becoming faster and more efficient all the time for Don, especially with the help of the Not Impossible community, which is allowing Gangjee to improve upon the technology.

"The day everyone who needs this technology can have it instantly available, I can rest easy," Gangjee said. "Until then, the code will keep flowing."

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About Lyndsey Gilpin

Lyndsey Gilpin is a former Staff Writer for TechRepublic, covering sustainability and entrepreneurship. She's co-author of the book Follow the Geeks.

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