2023-08-20 08:42:34
A few years ago, this 63-year-old Australian received an irremediable diagnosis: he has Charcot’s disease, a neurodegenerative disease that causes progressive paralysis of the respiratory muscles, trunk, arms and legs.
The disease will not kill him directly, underlines his wife, Carolyn Gorham, because he is suffering from an extremely rare form of this pathology.
“So he may live another 20 years. His brain is working fine, but he can’t even scratch his nose,” she said.
Thanks to the “stentrode”, a brain implant that the American company Synchron has been testing with patients for two years, Rodney Gorham hopes to be able to continue to consult the Internet, watch videos, send messages or even play video games for a long time.
Without this cutting-edge technology, the life of this former sales representative, sports car and travel enthusiast, “would be hell on Earth. Pure and simple torture”, sums up his wife.
The stentrode is a stent, eight millimeters in diameter, inserted into the brain through the jugular vein, to detect neuronal activity. It is connected to a small box, receiver and transmitter, located under the skin, at chest level.
“Half a Second”
For now, another box is taped to its skin, coupled with a small server. Synchron hopes to obtain the agreement of the health authorities next year to market the final product, without wires or external devices.
The clinical trials are conclusive but the start-up still has a lot of work to do, in particular to establish a universal language of computer commands by thought.
To click, “patients have to think about moving a part of their body, like kicking a ball or closing their fist (…) But for the same movements, everyone mobilizes their brain a little differently”, explains Tom Oxley, the founder of Synchron.
“The challenge for us now is to standardize a system that will work for millions of people, not just one patient,” he adds from his New York office.
In his home in Melbourne, Rodney Gorham answers a question from an AFP journalist, who asks him how long it took him to manage to “type” messages so quickly.
“Not long at all because I’m computer literate,” he replies in 45 seconds.
When he goes through the exercises necessary to perfect the software, it is his mind that controls the computer controls, even if on the table, his hand still moves slightly on an imaginary mouse — a mobility he will eventually lose. .
“Two years ago, the signal was quite slow,” recalls Zafar Faraz, a Synchron engineer, sitting next to the patient. “He was thinking about clicking, and it was about two and a half seconds before the click happened. Now it’s half a second.”
“Astronauts”
Rodney’s patient efforts have made a “monumental” contribution to improving the system, he said. “I don’t think we would be here if he hadn’t courageously volunteered to be a pioneer of this technology.”
“The families of the patients compare them to astronauts, like the first step on the moon, the first click via the brain outside the laboratory (…) There is a lot of pride”, remarks doctor David Putrino, who supervises the trials clinics in the United States.
He is careful not to raise false hopes. “We select patients who hope to advance science for others more than for themselves,” he notes.
For this doctor, developing implants like the stentrode is a question of humanity but also of physical health.
Because Charcot’s disease drastically limits social interactions. For patients, “the world is shrinking, isolation is setting in. And recent studies show that loneliness has the same health effects as smoking 17 cigarettes a day,” he insists.
This technology is still far from restoring real conversations, notes Carolyn Gorham.
But she gives her husband “a modicum of independence”.
“He can watch porn if he wants. Not that he likes porn, but that’s not the point, he can go to any site without having to ask anyone”, details- she. “And this freedom is great.”
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