Given a voice again after 15 years of silence
American tech lab gives man with Lou Gehrig’s disease specialized talking software
It has been 15 years since Don Moir last spoke, so long that he no longer recalls his last words. They might have been an “I love you” to his wife, she says, though even she does not remember.
In 1999, doctors cut open Moir’s neck to insert a breathing tube, and from then on the southwestern Ontario farmer could communicate only by moving his eyes to pick out letters from a board his wife held up.
But last year, with the help of an American startup, Moir, of Lucan Biddulph, Ont., would again speak, albeit through a machine, and for the first time in more than a decade, the paralyzed man could communicate by himself.
Moir was diagnosed in 1995 with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease and Charcot disease, a condition that causes a gradual loss of voluntary muscle functions.
In a short film the American startup, Not Impossible Labs, released last week, Moir is shown in the early stages of his condition sitting in a wheelchair. Over four years, his condition would worsen. Having lost his ability to do farm work and walk, Moir found his speech slurring and his breathing difficult. In1999, he had to be put on a ventilator.
The couple then hired a speech therapist and “pretty much right away we started using the letter board,” Moir’s wife, Lorraine Moir, said in an interview.
The board, as Lorraine describes, has the 26 letters of the alphabet distributed on it in four quadrants.
“Say he wants to spell the world ‘hello,’ he’ll look in the top right corner where the H is,” she said. “Then you start saying those letters and then he blinks when you get to the right letter. And then the next letter and so on.”
That was to be the couple’s sole method of communication until last year, when Not Impossible caught Lorraine’s attention.
Listening to the radio, Lorraine heard its founder talking about two of the firm’s initiatives: Project Daniel, 3D-printed prosthetic arms for a Sudanese war amputee and Eyewriter, an eyeball-powered drawing device for a Los Angeles artist who shares her husband’s condition.
Lorraine, who knew a Not Impossible volunteer, Javid Gangjee, through a friend, then reached out to the firm and it was not long before Gangjee started work on the device that would help Don Moir talk.
The device consists of a computer and an “eye tracker.” Not Impossible spokeswoman Sophia Dilley said usage is almost similar to Moir’s letter board — using eye movements to select letters — but Moir would be able to operate it himself.
“Don will look at a letter and then kind of look into the centre of the screen (to select that letter),” she said. When sentences are formed, the computer reads them out.
Not Impossible has made the software involved in Don’s device free for download. Dilley said the firm does not seek to profit from the device, though it will require a sponsor.
The system, however, is still in development. Gangjee is trying to hook it up to email, there are still a few bugs in the software and the Moirs still used the old letter board most of the time. Nonetheless, the device has changed Moir’s life.
And though he can no longer work the fields, Don, whose first words with the device were, “I’m going to grow corn this year,” would likely be emailing friends for “farm-related questions” as well, Lorraine said. With files from Jackie Hong and Nick Westoll