Paralyzed man unable to speak has message for son, requests a beer using ground-breaking technology

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(Video Credit: Wyss Center for Bio and Neuroengineering)

A completely paralyzed man, who is locked inside his body with no way to communicate with others due to a brutally debilitating disease, is the recipient of a brain implant that is being hailed as a medical miracle and allowed him to speak with his little boy and ask for a beer.

The unnamed 36-year-old father suffers from amyotrophic lateral sclerosis (ALS), better known as Lou Gehrig’s disease. Renowned physicist Stephen Hawking lived another 55 years after his ALS diagnosis and was able to communicate via a cheek muscle and a communications device. This young father no longer even has that. He can’t even move his eyes.

Two square electrode arrays were surgically implanted into his brain in March 2019, according to The Independent. The new technology allows him to compose sentences one character per minute. It is agonizingly slow but it does allow him to communicate through the power of thought which was an impossibility before.

ALS is a neurodegenerative disease that robs a person of motor skills. The life expectancy of most of those afflicted with the disease is two to five years.

The life-altering brain implants have not been tested on a completely locked-in patient before. It was not known if communication would even be possible.

“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,” Dr. Jonas Zimmermann, who is a senior neuroscientist at the Wyss Center, claimed.

“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,” he explained.

The young father’s biggest wish was to speak with his little boy as he grew up and that wish was at least temporarily granted. He gave the researchers at the Wyss Center for Bio and Neuroengineering in Geneva, Switzerland permission to implant the electrodes after he lost the ability to even move his eyes in 2018.

Three months later, after a number of unsuccessful attempts, the researchers found a configuration that allowed him to use brain signals to produce a binary response to a spelling program where he answered “yes” or “no” when given letters. Three weeks after that, he began to form his first sentences, and over the next year, the father produced dozens of them.

Not only did he request a beer from his caregivers, he asked for his head to be kept in an elevated and straight position when there were visitors in the room. He also asked for a message from his mother and to rock out to the band “Tool,” which he asked to be played loud.

The man also wanted a list of foods fed to him through his tubes including goulash soup and sweet pea soup.

“For food, I want to have curry with potato then Bolognese and potato soup,” he requested.

But the most touching thing he said was when he generated the message, “I love my cool son.” He also spoke with his wife.

The journal Nature Communications published the study titled, “Spelling interface using intracortical signals in a completely locked-in patient enabled via auditory neurofeedback training” this week involving the man and his progress. It notes that the BCI communication system can be used in a patient’s home, with some sessions even being performed remotely via the patient’s laptop.

The research and testing go on as the scientists work on similar implants for others with ALS. The brain-computer interface technology will cost almost $500,000 to use for the next two years so they are seeking funding for the project.

“This is an important step for people living with ALS who are being cared for outside the hospital environment,” George Kouvas, who is chief technology officer at the Wyss Center, stated. “This technology, benefiting a patient and his family in their own environment, is a great example of how technological advances in the BCI field can be translated to create direct impact.”


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