Exclusive: Mr. Smith Gets A Neuralink Implant

The before and after journey of a family using tech to battle ALS

Brad Smith’s body started to betray him seven years ago. A company operations executive living in Provo, Utah, Smith had tweaked his shoulder during a dodgeball game with a youth group at his church. He was 37 at the time, and it seemed like no big deal. Smith saw a physical therapist and dutifully completed his prescribed exercises over the course of a few weeks. The injury, though, lingered. Smith’s shoulder ached, and his range of motion had gotten worse instead of better.

In the months that followed, his wife, Tiffany, noticed other subtle changes. Brad started having unusual accidents around the house. He mistimed his steps on the stairs one day and slid down them. He also tripped over the cord of the family’s Ford Focus Electric while plugging it in – not just once but on multiple occasions. Brad’s gait appeared different to Tiffany as well. And, sort of amusingly, he could no longer carry a tune at karaoke. “There were things that were just weird,” Tiffany said.

Tiffany was concerned about her husband, but both she and Brad figured whatever was going on had to be relatively minor. They also didn’t have much spare time to dwell on the odd fall or an annoying injury. Tiffany had just given birth to Abigail, their third child, and the family had been dealing with a series of serious complications ever since.

Abigail had Down Syndrome and holes in her heart that were affecting the oxygenation of her blood. She also had a genetic condition called Hirschsprung's disease that prevented her bowels from functioning normally. (It’s a rare genetic disorder, but the Smiths were in the ultra-unlucky situation of knowing it well because their oldest son Lincoln suffered from the condition too.) As a result, Abigail needed open heart surgery and another procedure to remove most of her large intestine within the first six months of her life.

On top of this medical chaos, the Smiths were planning a move from Utah to Arizona. Brad had spent years working as an executive in the technology field but had recently been helping a relative on a shoe start-up idea that required frequent visits to Arizona. Brad found the work exciting and wanted to pursue it, and both he and Tiffany decided the family could do with a change of scenery. So, a bit more than a year after Brad had been hurt and Abigail had been born, they packed the family up and headed toward the Phoenix suburbs in July of 2018.

After taking a couple of months to get settled in Arizona, Brad finally went to see a couple of doctors. They performed MRIs and other tests for infections and spinal injuries. When nothing obvious turned up, a doctor recommended that Brad visit Barrow Neurological Institute, a world-renowned neurological disease and research center. It was during a visit there in October of 2018 that the doctor told him he might have ALS, or amyotrophic lateral sclerosis. “I left his office trying to look strong, but, halfway to my car, I collapsed, sobbing,” Brad told me.

ALS LEADS to the breakdown of motor neurons in the brain and spine, and it can attack peoples’ bodies at different speeds. Some have a slow progression where they can still walk and do most things for a decade. Others lose many of their core body functions in a matter of months. The disease makes it harder and harder to move, eat, talk and breathe until each one of those abilities is eventually taken away even while the mind often remains alert and active. The average life expectancy for someone with ALS is about two to five years from their initial diagnosis.

I first met the Smiths last October – six years after Brad had left the hospital in tears. They lived in Gilbert, a well-manicured offshoot of Phoenix full of spacious two-story houses that all look the same. The neighborhood had its perks with a park right outside of the Smiths’ door and nearby schools. Apart from their extraordinary medical circumstances, the Smiths fit the surroundings perfectly. They were a typical American family in a typical American city.

The inside of the house revealed their situation more explicitly. Right after opening the front door, I saw an elevator designed to ferry someone in a wheelchair. There were piles of clothes, papers and random objects scattered across the living room and kitchen that gave off the vibe of a family struggling to keep up with life. In the background, I could hear the rhythmic, Darth Vader-like pulsing of a ventilator.

Tiffany called out and told me to come up the stairs to meet Brad. I found him in the master bedroom in a bulky, mechanized bed with the ventilator beside it. Brad communicated to me through a device called the Tobii made by Dynavox, a company that specializes in computing systems for people with illnesses and disabilities. It used infrared eye-tracking technology to follow Brad’s gaze and help him select letters, phrases, software and internet services on a computer screen affixed to his bed or a motorized chair. Brad would stare at a spot on the screen for a couple of seconds, and the letter or word he’d highlighted would be selected, and then he’d head on to the next letter or word. It was a slow process that only made it possible to eke out words, and they arrived via a robotic-sounding computer voice. “I used to type 100 words per minute,” Brad said. “Now I am lucky to get five.”

I had come on something of a secret mission. I’d learned that Brad would be the third patient—and the first with ALS—to have the quarter-sized computing device from Neuralink implanted into his brain. Instead of using eye-tracking, the Neuralink system would translate Brad’s thoughts into actions. He’d be able to move a cursor on the computer screen simply by thinking of moving a cursor on a computer screen. The chip in his brain would pick up on the neuronal signals of his desires, process the data and send it out wirelessly to his iPhone or laptop where Neuralink’s software would spring into action.

The Smiths were eager to take part in the trial and were also eager to tell their story when the time was right. They agreed to let me and my film crew into their lives for a few months and to follow their journey as Brad went in for brain surgery and began learning how to use his Neuralink implant to control a computer with his mind.

Smith at Barrow Neurological Institute

WHAT HAD happened to Brad over the last six years was pretty typical with ALS. The injury to his left shoulder soon worsened to the point that he could not lift his arm up at all. Since Brad is left-handed, he had to learn how to shave and write with his right hand. Then, as the months went on, his arms weakened, his legs weakened, and his voice grew faint. He began struggling to swallow. As Brad put it, “ALS is slow but incessant.”

Tiffany is one of those people who seems to find a bright spot in any challenge, and she turned Brad’s illness into a family building exercise. Brad couldn’t shave anymore? Fine. The kids would help him shave with an electric razor. Brad struggled to chew? Okay, well, the family would alter its diet to things that were easier to get down, and Tiffany would help Abigail have a bite and then help Brad have a bite.

“We just kind of made adaptations,” Tiffany said. “The kids would see Dad start breaking down and crying, and they figured out that sometimes he just needs a hug. They would cuddle up next to him. As a parent, it makes you cry more. But, at the same time, they’re doing what they can to help and ease the burden too. You just make adjustments little by little.”

Two years after his diagnosis, Brad could no longer walk. Next up, his body gave out altogether. Brad lost the ability to speak. He became confined to his bed and a motorized chair. He required a feeding tube patched into his stomach for sustenance. After a bout with pneumonia that almost killed him, Brad went on the ventilator. If you’ve done the math, then you realize that it’s atypical for Brad to be alive at all.

Much of Brad’s life with ALS had been defined by darkness. The eye-tracking technology he relied on did not work well in bright light either indoors or outdoors. This meant that the Smiths had the curtains drawn in most of the rooms of their house and the lights dimmed very low. Tiffany and Brad’s bedroom felt somewhat like a cave, and the family took to calling Brad “the Batman” because he preferred the dark so much.

Tiffany and Lincoln with Dad

Brad spent most of his days listening to podcasts, watching videos and sending e-mails to friends and family. He would chat with his family but mostly just to request things he needed like food or a readjustment. Communicating with the Tobii went so slowly that Brad could not have a typical back and forth conversation. People would ask him a question and then wait and wait and wait for his reply.

Despite all the hardships they faced and these unusual conditions, the Smiths household felt alive and vibrant. Their children are polite and smart and always on the move, darting to a sporting event or a neighbor’s place to play. If Brad needed his ventilator tube cleared, he’d stare at the “cough” button on the Tobii, and it would bark out, “I NEED TO COUGH!,” in the funny voice, and one of the boys would run over and fix the tube and then head right back to playing.

Brad liked to crack jokes and had a constant stream of pre-loaded movie quips at the ready on his Tobii and would blurt out, “Help, help. I’m being repressed” or “I’m high maintenance” during his brief interaction with his sons, Lincoln or Edison. If his daughter wandered into the room, Brad usually had an, “I love you, Abigail” at the ready.

The positive energy in the house could be traced right back to Tiffany. She’d get up in the morning and feed the kids and then spend at least two hours hoisting Brad out of bed and showering him before heading downstairs to take care of some chores. She had to feed Brad, clear his urine and clean his respirator constantly throughout the day. Tiffany had spent so much time caring for Brad that she could interpret the subtlest of facial movements and know what Brad needed at any given moment without exchanging a word.

It’s not like she did all of this with a bubbly disposition and a smile. Tiffany, though, never seemed to complain about much of anything and just got on with whatever needed doing and made sure the kids were on time to their events or finishing their homework.

Watching Tiffany go about her day looked exhausting. She is something of a prisoner in her own home because she can’t leave Brad for long periods of time. That said, I’m not sure I ever heard her groan or sigh. She simply remained in constant motion going from one task to the next. Tiffany possessed an impressive combination of strength and compassion and, if you need a hero in your stories, then you’d do well to pick her here.

IN THE days leading up to the Neuralink surgery, the family had extra pep for some obvious reasons. It’s exceptional to have brain surgery and extra exceptional to have a high-powered computing device infused into your brain tissue. The parents and the kids were giddy to take part in a medical experiment, and they were extra hopeful that the Neuralink device would help Brad do away with some of the shortcomings of the Tobii and open up new possibilities.

Brad had been reluctant to leave the house because he could not talk to people or use his device to read or peruse the internet when outside or any place with normal lighting. More pressing, he couldn’t tell Tiffany when he was thirsty, needed help with his respirator or needed to use the bathroom.

Instead of using eye-tracking, the Neuralink device would translate Brad’s thoughts into actions. He’d be able to move a cursor on the computer screen simply by thinking of moving a cursor on a computer screen. The chip in his brain would pick up on the neuronal signals of his desires, process the data and send it out wirelessly to his iPhone or laptop where Neuralink’s software would spring into action.

Since the lighting conditions would no longer matter after Brad got the Neuralink, he hoped to take part in a host of new activities like his kids’ sporting events and neighborhood barbeques. The family also hoped that the Neuralink technology would let Brad pick words on his screen more quickly so that he could be far more active in conversations. Brad and his family were firmly in the Musk enthusiast camp and felt that helping Neuralink would further the company’s cause and help more people suffering from paralysis, ALS and other conditions.

“I want to move my cursor without looking at it constantly,” Brad said. “I want to click and drag. I want to scroll and read at the same time. Do you know how hard those simple things are with eye gaze? I hope you never have to find out. And, if Neuralink succeeds, maybe nobody will have to learn that again.”

On the day before the surgery, November 7^th, the Smiths met via video conference with Noland Arbaugh, the first recipient of the Neuralink implant. Affable and charming, Arbaugh addressed concerns from Lincoln and Edison and made Abigail smile. Arbaugh had formed a quick bond with his soon to be cyborg compatriot and his family, and everyone left the chat in good spirits and ready for the oncoming procedure.

DJ Seo, the cofounder, president and chief operating officer of Neuralink, stopped by the house in the evening to discuss the surgery and show the family the Neuralink device up close. He hung out for about an hour, answering all the Smiths’ questions.

Halfway through his visit, Seo picked up his phone and called his boss: Elon Musk.

The Smiths were giddy. They both admired Musk and had been hearing how busy he was in and out of meetings at Mar-a-Lago following the election. They were surprised and thrilled that Musk had found a moment to talk to them.

“Thanks for taking the time to say, ‘Hi,’ to us,” Tiffany said. “We’re super excited about tomorrow.”

“Yeah, I mean, there’s always some risk, but the potential is awesome,” Musk said. “So, I hope this is a gamechanger for you and your family.”

The conversation continued for about ten minutes. Brad tossed out some of his Monty Python movie quips, which made Musk laugh, and told Musk about the life changes he hoped the implant could help bring about. The kids smiled throughout.

“I am so excited to get this in my head,” Brad said.

“We’ll catch up after and hope it’s an awesome outcome,” Musk replied.

Musk and Seo Talking with The Smiths

THE NEXT day, the family woke up before dawn, piled into the family van with Tiffany at the wheel and headed to the Barrow Neurological Institute, one of several multi-story buildings in a Phoenix medical complex.

While the Smiths had been dealt more than their fair share of bad luck over the years, they were fortunate that Neuralink happened to be running its clinical trial at Barrow. The hospital was about a half-hour from their house and doing the surgery just about anywhere else would have likely made the procedure a logistical non-starter. They would also have world-class doctors by their side and receive state-of-the-art post-surgery care.

The procedure lasted two hours and took place with a mix of robot and human surgeons. Brad had a piece of his skull removed, and the implant and its electrode-laced threads were inserted into his brain. He rested at the hospital overnight and went home the next day - tired but in good spirits.

Of the three people in Neuralink’s trial, Brad had the most to gain and the most obstacles ahead of him in terms of learning how to use the device. Arbaugh and the other Neuralink recipient had been paralyzed but both could speak and were in otherwise relatively good health. They could go through long training sessions and provide quick feedback on their experience. They had not been using eye gaze technology either. By contrast, Brad had spent the last four years training his brain to adapt to the Tobii and had become dependent on the product and its nuances to communicate. Moving to something new would likely prove difficult.

A Neuralink Engineer Working with Smith

Neuralink sends a team of engineers out to help each patient learn how to use the implant. Not long after the surgery, the Smiths’ home filled with just such people. They would show up in the morning, have some small talk with Brad and Tiffany and then get to work, providing Brad with suggestions on how to think about using the device.

The heart of the process began with the Neuralink engineers setting up a configuration application that has a cursor on the screen and asking Brad to try and move the cursor into specific spots. They told him to pretend that his hand could still move and to do his best to mimic the sensation of pushing a mouse to the left and right and up and down. Even though the patients can’t actually move, their brains can translate that intention into action and even pick up on slight motor neuron functions that remain in the body.

Brad, though, had become so accustomed to the Tobii and doing things with his eyes that the usual techniques did not work as well out of the gate. It took weeks for the engineers and Brad to find other imagined movements to focus on and new techniques to have the cursor do its thing. Brad also still wanted the Tobii around for a while – partly because he would get tired of focusing on the new approaches and partly because it gave him comfort.

Eventually, Brad began zipping around his computer and ditched the Tobii altogether. He could select things on the screen with ease. He spent hour after hour with the Neuralink engineers either in person or on video calls, practicing his exercises and trying to expand the envelope of what he could do. In total, he used the Neuralink implant for 80 to 90 hours a week - most of his waking hours.

I’VE COVERED the technology available for ALS patients for years, and it’s been a frustrating experience. The typical medical device makers move slowly in part because they have little competition and in part because they’re chained to the insurance industry, which abhors change. It takes years and years for new computing devices and software applications to be covered by insurance, and ALS patients have historically been relegated to using clunky, old technology.

What struck me most about watching Brad and the Neuralink team was the speed at which they could try out new ideas. In a matter of weeks, Neuralink built an AI-based communication system for Brad that would listen to the conversations taking place around him and begin pre-populating his screen with reply options. Instead of replying slowly with a single word, Brad could blast out an entire sentence in a second or two.

Playing Video Games on the Bedroom Ceiling

The Neuralink engineers also made it possible for Brad to connect his implant to a webcam mounted to the top of his laptop, and this was a huge win. Brad can’t move his head and is often stuck looking at his computer screen. The camera allowed him to see his family and surroundings.

Brad also gained a new – or rather old – voice. The family had recordings of what Brad sounded like before ALS struck, and they were able to feed those into an AI system built by ElevenLabs. Brad now speaks with his original voice instead of the robotic one, and Tiffany swears he sounds just like he used to.

Brad could also go outside.

When Lincoln had a robotics competition, Brad rolled into the local school gym in his motorized chair and set up camp near the basketball court where the games were taking place. He used his webcam to watch Lincoln in action and could communicate with the adults and kids that popped by to talk. He started going with the kids to the pool and the park. The Smiths even began mapping out a road trip to Utah, marking the first time Brad would leave the Phoenix area since before the pandemic.

“Going outside has been a huge blessing for me,” Brad said. “I have been a Batman for a long time.”

The Neuralink experience has not been perfect. Brad’s surgery went very well in terms of the number of electrodes that connected with his brain tissue. Both the company and Brad were excited about what all that computing power would make possible, and Brad was particularly motivated to do his exercises and learn the technology. But, while he’s faster at selecting things on his screen than he was with the Tobii, he’s not that much faster. He can also use the AI for one or two quick responses, but the software is not good enough for him to participate in the flow of a typical conversation. And, as expected, Brad’s inability to provide rapid-fire feedback has slowed some of the experimentation Neuralink’s engineers can perform.

The Smiths Head to the Park

In the bigger picture, however, the device has been life-changing.

On my last visit to see the Smiths a few weeks ago, I noticed an alteration in Brad’s disposition and countenance. He seemed lighter and happier. Days filled with boredom and monotony had been replaced with meaningful work. Brad is intelligent and thoughtful, and he was coming up with a constant stream of new ideas for the Neuralink engineers to try. He was eager to talk and joke with his technology team and to find out what was possible.

One of the Smiths’ most pressing concerns throughout this experience has been how not to damage their children for life. How to avoid making them ever nervous and afraid of what will happen next. The Neuralink experience has at least partially countered some of these tensions by giving everyone in the family something new and hopeful.

The people who knew Brad in his prime describe him as garrulous and energetic and hungry for fresh experiences. The family is also members of The Church of Jesus Christ of Latter-day Saints and try to seek religious purpose and meaning in their lives, and Brad has always wanted to help those around him.

When his health was first declining, he initially decided to forgo the ventilator, but later opted to use the machine after having a talk with a troubled 17-year-old who stopped by the house for advice. He figured that if he could make a difference to the young man and others, then he could still be of service and should stay alive.

With Neuralink, Brad feels like he’s back to his old ways again. “It took years to get here, and I still break down and cry,” he said. “It is really nice to have a purpose greater than me. I am really excited to serve others in the future with this work.”