A Nova Scotia woman says she hopes a recent breakthrough with her severely disabled daughter will lead the way for other families hoping to communicate with their loved ones who have suffered a brain injury and can no longer speak.
Louise Misner and her 37-year-old daughter, Joellan Huntley, met with the media Tuesday to show off the eye-motion technology that helped Huntley communicate with her mother one-on-one in what’s been called a “Christmas miracle.”
Huntley was 15 when she suffered a catastrophic brain injury in a 1996 car accident that saw her thrown from the vehicle when it swerved to avoid a dog on the road. Ever since, she’s been unable to walk or talk, and is fed through a tube.
On Christmas Day, Misner was visiting her daughter at the Kings Regional Rehabilitation Centre in Waterville, N.S., and complimented her on her outfit. Huntley was able to respond by using the technology to pick out a shirt icon on her computer screen.
Joellan Huntley is shown in a pair of family handout photos. In what her mother calls a ‘Christmas miracle,’ the Nova Scotia woman who suffered a catastrophic brain injury in a 1996 car accident recently communicated one-on-one. (Handout/Canadian Press)
Misner said Tuesday that the breakthrough is just the start for her daughter, as the technology will grow with Huntley as her eye-movement skills advance.
“Her whole world is going to open up now,” Misner said. “She’ll just keep getting better and better. … I’m proud of her.”
‘We never gave up’
Misner said she always knew the day would come when she would be able to communicate with her daughter again.
“She was trapped in her body. And I knew that right after the accident, because she knew us, she responded to us,” Misner said. “We never gave up.”
Huntley’s family won a $ 1-million insurance settlement as a result of the crash. Then, in 2014, Nova Scotia’s Community Services Department tried to claw back money from the family for Huntley’s past and future care costs.
The family successfully fought the provincial government, reaching an undisclosed out-of-court settlement in April 2015, after they argued the money was needed for physiotherapy and technology that would improve her quality of life.
The technology that was ultimately adopted is called Eyegaze.
Joellan Huntley gives her most precise answers when she can choose from six icons on the screen. But the technology will be able to grow with her as she hones her ability to communicate. (Rob Short/CBC)
Misner credits the hard work of the staff at the Kings Regional Rehabilitation Centre for her daughter’s breakthrough.
Amy Smith, who’s worked with Huntley for 12 years, said they started by having Huntley track pictures to practise following something with her eyes.
From there, they moved to a rudimentary system: two tongue depressors taped to a ruler, each one attached to pictures of yes and no cards. Huntley was able to respond to questions by looking at either of the cards.
They eventually began looking for a more advanced system and landed on Eyegaze, which uses an eye-motion camera and reflects light in Huntley’s eyes to map her eye movement.
Technology can grow with Huntley
“It is a huge team effort. Joellan does 99 per cent of the hard work in all of this and our job is to provide her the tools,” Smith told reporters Tuesday.
“The breakthrough on Christmas Day was that the system was set up for her and she was completely independent; there was no one else facilitating that conversation with her,” she said. “It was just a natural conversation she had with her mom, like anyone else would.”
Smith explained that while Huntley is currently using pictures to communicate, she believes Huntley can read. She said her best and most precise answers are when there are six pictures on a screen.
Louise Misner told reporters that she never doubted the day would come when she would be able to communicate with her daughter again. (CBC)
But the system has the ability to grow with the user, and has a setting for identifying letters. In theory, Huntley would one day be able to spell out her own words.
“We’ve used it, we’ve tried. Joellan really likes a challenge. So she works really hard when those boards are up. But we’re just not quite there yet with her practice to be able to be that precise with the icons,” Smith said.
Misner said her daughter will be able to bring the computer system home with her on visits once they build a mount to attach it to her wheelchair.
“Joellan wanted to go into medicine; now her star’s going to shine. And she’s going to help all the others like her.”
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