ALS “locks” people into their body. Now science is getting them to communicate with the outside

There are few diseases more sadistic than Amyotrophic Lateral Sclerosis. It is a degenerative, slow, progressive disease that, little by little, disconnects the motor neurons of the nervous system and encloses patients in themselves. This muscular paralysis spreads, preventing control of the parts of the body, first, and speaking, later.

For years, work has been done to design systems to allow these patients to continue communicating. The example of Stephen Hawking, perhaps the most famous patient in the world, is paradigmatic: during the years he communicated through the extrinsic muscles of the eye, one of the slowest to degenerate. But what happens when you completely lose control and are unable to communicate even through your eyes?

The locked-in syndrome. Because, in reality, that question has a cascade of consequences that go further. And, as the prevalence of neurodegenerative diseases increases, even more so. As Jonas Zimmermann, a neuroscientist at the Wyss Center in Geneva, explained, scientists have been trying for years to find out whether “people with complete locked-in syndrome, who have lost all voluntary muscle control, including eye or mouth movement, also they lose their brain’s ability to generate commands for communication.” Are they locked inside themselves or does there come a time when everything disappears?

a door in the brain. The answer lies in a study that has just been published by the journal ‘Nature Communications’. A team of researchers from the Wyss Center for Bioengineering and Neuroengineering in Geneva (Switzerland), in collaboration with the University of Tübingen (Germany) have just implanted a device that allows the “inner life” of the nervous system to be translated into words, sentences and conversations.

It’s not the first time it happens. Researchers have been after this for years. In 2016, Hanneke Bruijne, a Dutch doctor with ALS became the first person able to break relative confinement and communicate in full sentences thanks to a brain implant that allowed a computer to decode her thoughts in her daily life. She had some success and let us know that these people (cloistered in their own body, but cognitively in good condition) say they have a good quality of life if they maintain some ability to communicate with others.

The current study goes further and tries to delve into the problem to help people with increasingly advanced ALS. In Bruijne’s case there was some remaining voluntary movement. In the current case, no: the patient (30 years old) was diagnosed with rapidly progressing ALS and was already immersed in strict confinement, “the interface is the only means of communication”.

How does the device work? The team has implanted two sets of intracortical microelectrodes in the motor cortex and the system uses a machine learning algorithm to decode neural information. In the current case, for example, the patient can form words by selecting letters of the alphabet (which he hears through headphones) simply by thinking “yes” or “no.”

The system allows for use in a family setting, which the researchers say is an “important step for people living with ALS who are being cared for outside the hospital setting”; and, now, they are working on implantable systems that allow implants to be connected with new signal processing elements in a more flexible way. For now, yes, it is a deeply experimental technology.

Life beyond Neuralink However, we see that the world of brain-computer integration is very much alive. Sometimes, especially among those of us who move through the technological scene, it seems that there is little beyond Neuralink. Nothing is further from reality. We have the keys to the mind and every day we are closer to being able to get the most out of it.