In many ways, Jacob Trossman is just like many 15-year-old boys. He’s embarrassed when his mom hugs him in public. He goes to high school and loves drama class. He enjoys a good joke.
But there are a few things that also set Trossman apart from his peers. Namely, he can’t speak.
That’s why, as often as he can, Trossman visits the Holland-Bloorview Kids Rehabilitation Hospital in East York.
The researchers there have a found a way to give Jacob his voice back — through blinking his eyes. The innovative technology, which harnesses electrical signals caused by blinking, is the first of its kind.
‘I want a great big hug’
Trossman was diagnosed with Pelizaeus-Merzbacher disease (PMD) at 10-months-old. It’s a rare, incurable neurogenerative illness that paralyzes the vocal cords. It also causes coordination and intellectual function to deteriorate. Doctors weren’t optimistic about the kind of life Trossman would live.
But his mother, Marcy White, says that prognosis didn’t stop her from fighting for her son and his voice.
But before technology came into the picture, it was a slow process to decipher Trossman’s wants and needs.
“It was very frustrating for Jacob, especially because if we didn’t ask him the right question, he couldn’t communicate what he wanted to say,” she said.
“So, for example, let’s say he wanted to say, ‘I want to go outside,’ but I didn’t know and I was saying, ‘Do you want to play a game? Do you want to go into a different room?’ He would get very frustrated because I wasn’t keying in on the right question for him.”
That all changed in August of 2010, when White and Trossman visited Holland-Bloorview for the first time.
Researchers outfitted Trossman’s chair with a tray, which carried a big, green switch. It was connected to an iPod programmed with familiar messages he may want to use. By pressing the switch, Trossman would prompt the iPod to scroll through the messages. Another push would allow him to select a category and then the phrase he wanted to use.
Although movement remained difficult, Trossman selected his first phrase.
“I want a great big hug.”
It was the first time White heard her son talk to her.
“It was amazing,” White said. “The coolest part I think was the expression on his face, because I’m not sure if he was really happy he was able to get a hug, or he was able to realize … he had the ability and the tools to express himself.”
Blinks to words
That was eight years ago, and since then, Trossman has lost the ability to move different parts of his body.
Watch a demonstrate of Jacob’s former cheek-switch.
Thankfully, the researchers updated the technology, first with an elbow-switch, then with a cheek-switch. But eventually, those options didn’t work either, a frustrating development for White.
“We know the one thing that is still working so well in Jacob’s body is his desire to communicate, and his understanding and his cognitive abilities,” she said.
To harness those abilities, Holland-Bloorview researcher Amanda Fleury began to develop her own solution in the spring of 2017, a first-of-its-kind technology that would allow Trossman to communicate by blinking his eyes.
“So basically, every time Jake blinks or any of us blink, there’s an electrical signal that happens because your eyeballs move upward,” Fleury said. “We’re using fabric-based electrodes in a headband to measure that electrical signal.”
Each time there’s an electrical signal, the information is sent to a computer and then translated into a mouse click. Fleury has worked to create a particular algorithm that detects when Trossman’s blinks are intentional.
When it’s working properly, Trossman can use the technology to press play on audio pieces like jokes and music.
“To be able to see someone effecting change for the first time, and see their reaction when they recognize that they’re able to control something, maybe it’s music, maybe it’s telling a joke, it can be anything … that’s been a really powerful thing,” Fleury said.
Trossman has already used the technology to recite a speech at a friend’s bat mitzvah. White worked with him to figure out some of the things he might like to say, and the team at Holland-Bloorview had the message recorded. They outfitted Trossman with the headband, and every time he blinked, a new sentence of his message would play.
“He was able to share his thoughts and participate in the same way many of her other very good friends were able to, only he did his with technology,” White said.
Eventually, White hopes she’ll be able to take this technology home. Just like his previous devices, the headband would be attached to an iPod or iPad. Then, Trossman would be able to select a familiar phrase or even go through the alphabet to create his own.
“He knows what needs to be done, we just need to get the technology to catch up to him,” White said.
Fleury is working on creating a smaller amplifier device, which will be more portable and reliable. There’s no specific date for when that technology will be ready, but White is hopeful it will be soon.
“I just have this vision of [Trossman] being able to wheel into school one day and have the technology available so that he could communicate with the kids in the same way they communicate with him,” she said.
It would be one of many accomplishments for Trossman, who has defied the odds ever since that first diagnosis.
“There is so much that he wants to say, and thanks to some of this technology, there’s so much that he is able to say … and will continue to say.”