Canadian researchers developing "mind-reading" device for children with severe CP

From The Star in Canada:

Imagine being imprisoned in a body without the ability to move or speak, unable to communicate even the simplest of choices. Orange juice, not milk. Turkey sandwich, not tuna. Blue T-shirt, not red.

That is the reality for thousands of children and youth afflicted with conditions like severe cerebral palsy that have robbed them of movement and speech – and one that Canadian researchers are working to change.

Scientists at Bloorview Kids Rehab in Toronto have developed a prototype device that allows a kind of mind-reading, using near-infrared light to decipher the brain's response when a person is offered a choice of two objects.

In a study of nine healthy adults, published this month in the Journal of Neural Engineering, the scientists were able to decode a person's preference for one of two drinks displayed on a computer screen with an average accuracy of 80 per cent.

Sheena Luu, a PhD student in biomedical engineering who led the study, said the headband-like device shines near-infrared light onto the forehead and detectors measure the light's intensity when it bounces back out again.

"The light travels through the skin and the scalp and the bone and reaches the cortex, the top layer of the brain," she said Tuesday. "We're reading the intensity of the light that has been absorbed by the brain tissue."

When a region of the brain becomes active, it requires more oxygen, Luu explained. "This increase in oxygen concentration changes the absorption of light that passes through that brain tissue. And so we can map out the areas of the brain that are active and non-active when a person looks at a drink that they like, compared to when they look at a drink they don't really like."

A computer is used to recognize the unique pattern of brain activity associated with preference.

Supervising author Tom Chau, a senior scientist at Bloorview, said the device is one part of a larger project to find alternative ways for children and youth robbed of communications skills by cerebral palsy and neuromuscular conditions to interact with people and their environment.

"Basically their mind is alert," he said. "This is kind of the compelling argument behind the work, that these individuals are cognitively capable – they're aware of their surroundings, they understand what's going on – but they have no means of communicating their intentions or preferences to the outside world."

"Some of the parents we work with describe it as a prison, that their child is basically locked in a prison, in the prison of a non-functioning body. And they describe it as a crime, a crime that we don't have a solution for today."

Karen Castelane's 15-year-old son Max Weinryb was born with severe spastic quadriplegia cerebral palsy, and she is excited about the possibility of him one day trying out the technology. Max can't speak and has almost no voluntary movement.

"And that's the rub of it all," said Castelane of Toronto, who also has a healthy 10-year-old daughter. "There's some cognitive impairment, the degree to which we don't know. But what we do know from observing him over 15 years is that there's very much a regular 15-year-old boy trapped inside a body that he can't control."

"At first blush, when people see him, they can easily get the impression that he's nothing, that he's not aware of anything, that he can't enjoy anything, he can't participate or contribute in anything," she said. "And nothing could be further from the truth."

Max lives at home, looked after by his mom and caregivers. He takes part in various programs at Bloorview and goes to school, attending a special-needs class.

Castelane said her son appreciates witty, sophisticated humour, and certainly understands TV shows and conversations. "The more academic and sophisticated, the more keen, calm and responsive he is," she said.

While she and the family can figure out some of what Max wants by his facial expressions, she admitted that much remains a mystery.

And since virtually none of the off-the-shelf devices designed to help children with movement and speech disorders have any benefit for her son, Castelane had come to believe "there was no way we would unlock Max's communication box."

But the promise of the near-infrared brain-imaging device has given her hope for Max's future, she said, adding that he could ``tell" people what he wants instead of other people trying to second-guess his desires.

"What that does is he can just think of something and it's really tapping into intention. And that will just open up everything."

"I can't wait to one day have Max (think) something and have a computer say: `I do love you' or `I thank you, you were great,' or `I hated that television show'... or `I hated that colour, you made me wear that shirt."'

The researchers' next step it to test adults over multiple days to ensure that brain patterns associated with preference are reliable over time. In the fall, Luu hopes to begin testing it on teenagers with disabilities.

Chau said they hope to have a refined version of the device to use on children who can't speak or move in a year or two. Eventually, they'd like to use wireless technology to make it portable.

"Pretty much there is no independence and it's questionable whether there's any quality of life when you can't even express your own preference," said Chau. "We hope that it will open up a world of possibilities for these individuals."