In 2008, Hanneke de Bruijne was diagnosed with amyotrophic lateral sclerosis, better known as ALS. Gradually the disease afflicted her brain cells and the nerves in her spinal cord until by 2010, she had lost all voluntary control of her muscles. She needed a tracheotomy to breathe. With the hole in her windpipe and the loss of muscle movement, de Bruijne became "locked-in." She couldn't move, she couldn't talk. All she could do was blink.
Like other people in her situation, including renowned theoretical physicist Stephen Hawking, de Bruijne began using a computer system with a camera that tracked her eyes and let her select letters on a screen to spell out words. That was the only way she could express herself.
To people unfamiliar with her, de Bruijne's life might have appeared hopeless. But by the time she met neuroscientist Mariska Vansteensel in 2015, de Bruijne, now age 59, told the researcher, that on a scale from one to 10, she graded the quality of her life as a seven.
"That is really an eye opener for many people, that life can actually be worth living in these kinds of situations," Vansteensel told Seeker.
Other studies have shown that people with locked-in syndrome can be happy and feel good about their lives if they're able to communicate adequately. But eye-tracking systems are not always up to the task. They don't work well outside, where lighting conditions vary, and they frequently need to be recalibrated, if the user moves even slightly.
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This week, Vansteensel, an assistant professor at the University Medical Center Utrecht in the Netherlands, and her colleagues report on a brain-controlled interface, or BCI, that could give people with locked-in syndrome a way to communicate in everyday life - inside and outside their homes. Because the system is self-contained and untethered from a computer station, the patient has more freedom.
For de Bruijne this means the ability to spend more time outside.
"She loves nature, she loves going on holidays, she loves to sit in her garden when it's beautiful weather," Vansteensel said. "Now she has our system and she uses it to communicate outside."
The BCI consists of several components starting with a brain implant made of four tiny electrode strips. Two were surgically implanted over a part of the brain that controls hand movement. The other two were placed over a part of the brain activated when a person performs mental calculations, such as counting backward.
Next, the doctors ran a wire beneath the skin to a small transmitter implanted in the chest area. A receiver and an antenna, which can be worn on the outside of the chest, capture the signal from the transmitter and send it wirelessly to a computer tablet that has been coated to reduce glare in the sunlight.