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LEE’S SUMMIT, Mo. — A paralyzed Missouri man is hoping new technology using eye tracking is promising for giving him a voice.
The cause of his paralysis is due to “locked-in syndrome”, a rare neurological disorder.
The resilient 32-year-old receives care at the Missouri Mentor in Lee’s Summit.
After living with locked in syndrome for more than two decades, Jeremy Tye and his family hope new technology will help give him a voice.
Jeremy and mom Holly Tye currently use a letter chart to communicate.
He uses his eyes to indicate yes or no.
“Use that chart to be able to go through each letter so he can actually spell it out, because his brain is still highly functioning in there,” Holly said, “and as you saw he’s very wordy. He loves to spell.”
Holly and John Tye said their son is fun and outgoing.
“He spreads joy to everyone that he’s with,” Holly said, “He’s just amazing.”
He loved playing soccer and talking on the phone, but Holly said that chatter stopped when Jeremy was 11 years old.
He suffered a brain injury while on the playground at school. Jeremy had a stroke, which resulted in “locked in syndrome.”
Jeremy’s former psychologist, now friend, Dr. Brian Belden, said it’s rare.
Belden said he worked at Children’s Mercy for more than 35 years.
He said these patients have total paralysis of the body, except for eye movement. They also can’t talk.
“For 21 years, someone has to talk to him first. ‘How are you feeling? Yes, no.’ He can’t just have someone walk by and say hi how are you doing,” Belden said. “He has to wait for someone to speak to him before he can do anything. I can’t fathom that.”
The Tyes said they previously got a communication system, which only works if the 32-year-old is positioned in the exact right spot, and caretakers are correctly trained, which takes time.
They said it’s a challenge to use, which often leads to frustration.
Belden believes the new, more advanced version, which uses eye tracking technology, could be a game changer for Jeremy.
“It would be life changing,” Belden said. “Once that door’s opened he can text people, he can ask questions, he can participate in conversation, participate in a group. He can be a comedian.”
Jeremy’s writing a book — and wants to be a motivational speaker.
“Giving him his voice back, it’s like a small step, but it’s a huge thing because once he has a voice then where he wants to go from there is limitless,” John said.
We asked Jeremy — what this new technology would mean to him.
“He said, ‘The world is what it would mean to me,” Holly said for Jeremy, “and everybody I know would be excited to not have to always have to initiate a conversation.”
Belden said Jeremy’s evaluation went well. The next hurdles are insurance approval and a trial with the technology.
