A man with ALS communicating via brain waves.
I can’t imagine worse torture than being stuck in a locked-in state caused by amyotrophic lateral sclerosis (ALS). ALS is a disease of the nervous system where nerve cells slowly break down, causing muscles to weaken throughout the body.
Patients who survive through the weakening process eventually reach a locked-in state where even though their brain still functions, they are completely paralyzed with their eyes mostly closed.
In this state, the person is unable to communicate. People with ALS typically live two to five years after being diagnosed and usually die from paralysis of the respiratory diaphragm.
However, life may get a little better for people with ALS after a new development that has allowed a man to form sentences using only his brain waves. Researchers at the Wyss Center for Bio and Neuroengineering in Geneva, Switzerland, developed a brain electrode that they implanted into a 36-year-old man in a locked-in state that has allowed him to communicate.
“Ours is the first study to achieve communication by someone who has no remaining voluntary movement and hence for whom the BCI is now the sole means of communication,” said Dr. Jonas Zimmermann, a senior neuroscientist at the Wyss Center.
“This study answers a long-standing question about whether people with complete locked-in syndrome – who have lost all voluntary muscle control, including movement of the eyes or mouth – also lose the ability of their brain to generate commands for communication,” Zimmermann added.
After three months of unsuccessful attempts, the patient was able to spell “yes” or “no” and to form sentences through a speller program.
One of his first requests was to be put in an elevated position when there are guests in the room. He also was able to ask for one thing he probably needed more than anything at that point, a beer. He had to be dying for a beer. He also asked for the band Tool to be played “loud.”
The electrodes allowed him to interact with his 4-year-old child, who he was able to call “my cool son.” He also asked for specific foods to be put into his feeding tube. “For food, I want to have curry with potato then Bolognese and potato soup,” he said.
This was the first time that brain electrodes were even implanted into a locked-in patient and researchers had no idea if they would work.
Completely locked-in man uses brain-computer interface to communicate. Today, Wyss Center COO, Olivier Coquoz, discussed the team\u2019s new Nature Communications paper on @RTScqfd. Listen back to the interview here: https://pages.rts.ch/la-1ere/programmes/cqfd/24-03-2022#12927261\u00a0\u2026 #neuroscience #BCIhttps://wysscenter.ch/updates/completely-locked-in-man-uses-brain-computer-interface-to-communicate\u00a0\u2026— Wyss Center (@Wyss Center) 1648138704
The scientists behind the groundbreaking technology are now seeking funding to provide similar implants for other people with ALS. “This is an important step for people living with ALS who are being cared for outside the hospital environment,” said George Kouvas, chief technology officer at the Wyss Center.
It’s stories like this that remind us that we should never take for granted the ability to communicate our basic needs. Let’s hope that the man with ALS will be able to drink as many beers as he likes and to be able to rock out to Tool as loud as possible for the rest of his days.
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