This ALS patient has a brain implant that translates his thoughts into computer commands

This ALS patient has a brain implant that translates his thoughts into computer commands

Staring at the computer screen, Mark focused deeply, his hands at his sides. His right index finger trembled slightly on the pillow, and then a warning sounded from the screen in front of him, a message to the guardian that he needed help.

Without clicking a mouse or touching the screen, Mark selected these commands on his computer using only signals from his brain. Mark, who CNN agreed to identify using only his first name for privacy reasons, has an implant in his brain that translates his neural activity into instructions on a computer.

Mark is only the 10th person in the world to be implanted with this type of brain computer interface or BCI. He took part in a human trial with a company called Synchron and underwent the procedure in August, after being diagnosed with amyotrophic lateral sclerosis – sometimes called ALS or Lou Gehrig’s disease – in 2021.

The hope is that the technology in Mark’s brain can help him and others like him who have lost their motor function. “It’s an opportunity for a piece of technology to help someone who wouldn’t be able to help themselves,” Mark told CNN.

Excitement about the potential of BCI technology has grown over the past year, fueled in part by high-profile support from billionaire Elon Musk through his company Neuralink, as well as the recent publication of several promising studies from other players in the burgeoning field.

But the technology is far from mainstream, and efforts to commercialize it remain fraught with regulatory hurdles, ethics and privacy concerns. And the emerging technology itself faces many limitations. In other words, this procedure isn’t coming to your local doctor’s office anytime soon.

Still, Mark says the opportunity to be at the forefront of testing this technology that could help others is important to him. Knowing that there is no cure for ALS, Mark said, signing up for the trial felt like a “no-brainer” to him.

“I thought I had two options: I could wallow in self-pity, or I could pull myself up by my bootstraps and do what I could to help,” Mark said.

Creating a mind dictionary
Relaxed and wearing a light blue sweater, Mark showed no obvious physical signs that he had a BCI. He says he didn’t notice either.

“I had no sensation in my brain, that there was something there,” he told CNN Chief Medical Correspondent Dr. Sanjay Gupta in an interview.

Mark has two small scars, one on his right chest and one on his neck, but no other visible BCI indicators.

The Synchron brain implant, which Mark owns, is called a Stentrod and consists of a stent with an electrode sensor that can detect electrical brain activity. Synchron patented the Stentrode, and the company was the first to receive approval from the US Food and Drug Administration to begin human trials of a permanently implantable BCI.

Like regular stents, it does not require open brain surgery. Instead, it can travel through the body’s natural network, so its entry point is Mark’s jugular vein. His surgeon connected the device through a blood vessel up to the top of his brain, where it was located in the sagittal sinus, one of the main veins of the brain, cradled in the motor cortex, the part of the brain responsible for movement.

Whether it’s shaking hands or taking a step, every action a person takes is associated with a specific electrical signature from their brain waves. Stentrode learns to recognize those electrical patterns and creates a personalized movement dictionary.

There may be a general electrical signature for different movements, but each person will be slightly different, making the device highly personalized.

When Mark thinks about a certain movement, such as clicking somewhere on a computer screen, Stentrode reads those brain signals and recognizes the intended movement. Then the message travels through a very thin cable to an internal transmitter, similar to a pacemaker, which is surgically implanted in his chest.

So much data travels from Mark’s brain to the transmitter that it needs to be connected to a computer. The external transmitter sits directly above the internal transmitter and carries signals from Mark’s brain to the computer almost instantly. Currently, Mark needs to be connected to a computer to use the device.

However, the goal is that the next-generation device will eventually have a wireless process, so the patient will only need the Stentrode and the transmitter inside the chest.

Be prepared with an ALS diagnosis
Mark first noticed that something wasn’t right in 2020. He couldn’t snap a finger or make a pinching motion with his left hand; he also noticed some visible muscle atrophy. “And then I dropped a cup of coffee,” he said.

At age 63, Mark’s diagnosis was official: He had ALS, a disease that most people are only expected to live three to five years after symptoms develop.

“It’s a tough pill to swallow,” he admits. “I still consider myself young.”

He has a job he loves and will retire soon. He also has a family, including two daughters and a granddaughter.

Despite the diagnosis and the weakness in his arm, Mark continued to work at his job at a wholesale flower company. Lifting buckets of water and flower boxes, however, became too difficult. Then driving becomes difficult. By December 2022, he stopped driving altogether.

There is an emotional impact to ALS as well as Mark begins to lose his independence. “I lived alone for 13 years, so I’m used to doing everything by myself,” she said.

He ended up moving in with his brother and his brother’s family. Today, her voice is strong, and she can still walk, but she says she has to use a foot-controlled feeder to eat because of the loss of strength in her arms.

Mark can still make some very limited movements with his hands, but he has lost most of the dexterity in his fingers – meaning he can’t pick up a pencil or scroll on his phone. Mark hopes BCI can help him with tasks like accessing his phone.

But Mark did not lose hope that he could still find a way to help others. He enrolled in a drug trial, and when that ended, he immediately asked his doctor what else he could do that was “new and exciting.”

That’s when he found himself in this feasibility trial with Synchron and BCI.

After his device was implanted in August, his ability to use his BCI wasn’t immediate, something he found frustrating. It took about two months for his recovery, including waiting for the swelling from the pacemaker-like device to go down, before the Synchron team could turn on the implant. But he still remembers the first time it worked.

“There was quite a bit of cheering,” he recalled. “We tried and tried, and it didn’t work well, and finally it worked.”

For the past three months, Mark has been working with Maria Nardozzi, an occupational therapist from Synchron. As he masters each task, he builds a movement dictionary that the device uses to read his brainwaves and translate them into actions on the computer. So far, Mark has mastered a program that allows him to send health notifications or pain reports to his providers if needed. Her immediate goals are to be able to control her Alexa and turn on Netflix, as well as learn how to send texts.

“Text messaging is a very critical element of how we communicate with our family and friends today,” said Stentrode developer Dr. Tom Oxley, CEO of Synchron. “So that’s what people usually want back.”

Oxley said he has seen some patients with stentrods already able to type between five and 10 words per minute, a remarkable achievement when you consider that most people can text between five and 20 words per minute.

Mark has also used the device to play table tennis video games such as “Pong”. He described the feeling of using the device as his brain waves contracting and then relaxing. Every move he wants to make on the computer has a focused and deliberate thought. If he doesn’t want the bar to move, he must rest.

The process of training the device takes patience, Mark said, but he’s excited to help his doctors and the Synchron team learn alongside him.

“Sometimes it doesn’t work the way we want it to,” he said. “Part of being involved in research is that we’re here to learn, we’re here to advance technology.”

The rise and race for BCI technology
Although still far from the mainstream, the potential of BCI technology has prompted the emergence of a handful of companies racing to develop this futuristic health technology.

Two separate studies published in the journal Nature in August show how brain implants using artificial intelligence technology empower paralyzed patients to communicate by translating neural signals into text or speech through avatars at speeds not previously achieved by this type of technology.

And investors are showing a strong appetite for neurotech startups and companies working in the BCI arena. Synchron has raised about $145 million since its inception, the company said in a statement in December 2022. Musk’s Neuralink has raised more than $323 million, according to a regulatory filing last year with the US Securities and Exchange Commission.

“They’re all quite different,” Oxley, a neurologist and CEO of Synchron, told CNN about the major players in the BCI field right now. Musk, in particular, has “shined a big light on the field” with his involvement in Neuralink, Oxley said.

Ultimately, Oxley added, “competition is good.” As a result, he said, we’ll probably see a lot of “different types of technology coming in for different use cases.”

As the race to commercialize BCIs heats up, policymakers are taking note. A United Nations body held a conference with politicians and stakeholders in July at UNESCO headquarters in Paris to discuss the ethics of emerging neurotechnology. The conference concluded with a call for a comprehensive framework to harness potential and address risks.

“Neurotechnology is advancing at warp speed,” António Guterres, UN secretary-general, said at the event. “This progress is a reason for celebration – and a reason for caution. We must uphold ethical standards and ensure the full protection of human rights.”

Musk’s involvement has sparked controversy. Billionaire CEOs of Tesla and SpaceX have made bold claims about the potential of BCI to solve a variety of complex problems. Neuralink made international headlines this year when Musk said in a broadcast at X that the company had implanted a chip in a human brain — though he didn’t share many other details. Earlier this month, Musk also said participants in Neuralink’s first human trial could control a computer mouse with their brains. Neuralink received FDA clearance for human clinical trials in May.

Neuralink came under fire in 2022 for its treatment of monkeys during testing. The company admitted that one monkey died during an attempt to get the animal to play a video game like “Pong.” Current and former Neuralink employees at the time accused the company of rushing to market, according to Reuters, resulting in negligent animal deaths.

Hope for the future and opportunities for a full life now
There are still many things Mark can do on his own. He can walk and talk and maintain some movement in his limbs. But in the years since his ALS diagnosis, Mark said, he has noticed a loss of dexterity.

BCI gives Mark hope that he can make a difference for others in the future and the opportunity to continue living a full life now.

If he wants to access Audible, his favorite app, he has to have someone hold his phone flat in front of him so he can select the app. He hopes that eventually, his implant will help him gain easier access to his audiobooks and help with other daily tasks, even controlling his robotic feeder, which he now controls with his feet.

“This, for me, is an opportunity to be able to do those tasks without using my arm,” he said.

Mark concluded, he hopes his involvement in this study also gives hope to others. He said this was the main reason he joined the trial.

“It’s an opportunity to help myself,” Mark said. “But more importantly, I think, to help other individuals.”

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