Top Doctors: A NeuroLife Neural Bypass volunteer shares his remarkable story
Inside one of those cookie-cutter hotel conference rooms, a serious man with a heavy Swiss accent discusses the prospective benefits of cogno-ceuticals—a virtual reality treatment for neurological pain. It might sound like futuristic technobabble if not for all the equally serious experts in the audience. It's midafternoon on April 28, and scores of neurologists, psychiatrists, engineers, computer scientists, academics and entrepreneurs have overtaken the lower level of the Hilton Columbus Downtown for the second annual Brain Health and Performance Summit. This afternoon's breakout sessions have catchy names like “Noninvasive Monitoring of Intracranial Hemorrhage” and “Neuroprosthetics-enabled Cortical Control of a Paralyzed Hand.”
The Swiss presenter cedes the podium to Gaurav Sharma, a scientist from Columbus' Battelle Memorial Institute, whose session is about the aforementioned paralyzed hand, specifically, Ian Burkhart's. Sharma begins with a stat: 5.5 million people in the U.S. suffer from some form of paralysis. He's here to present a potential solution under development by Battelle and Ohio State University—NeuroLife Neural Bypass Technology.
Researchers have implanted a tiny microchip into Ian's brain, which hooks into a system of computers and algorithmic software via the pedestal, a short black cylinder that looks like a plastic water bottle cap screwed to his skull.
Sharma shows a video of Ian playing “Sweet Child O' Mine” by Guns N' Roses on a modified “Guitar Hero” video game, using a hand that otherwise couldn't pick up the controller, let alone play. In the back of the conference room, the video's 26-year-old star watches from his motorized wheelchair. Ian needs no introduction, Sharma says from the podium. It might be redundant at this point.
The previous evening, in an adjacent ballroom, Dr. Ali Rezai bestowed Ian with the summit's first Brain Health Hero Award. Rezai is the summit's leader, as well as the OSU neurosurgeon who implanted Ian's microchip. He calls Ian a pioneer. The next speaker, Dr. Caroline Whitacre, lauds Ian for taking part in NeuroLife at great personal risk. The award itself is presented by Stanley and Joan Ross, whose $10 million donation funded the creation of Ohio State's Center for Brain Health and Performance. Stan says Ian's contribution will resonate for generations. The man of the hour takes center stage to an ovation.
For these visionaries, Ian is an embodiment of the untapped potential of neurotechnology and a harbinger of optimism for millions living with paralysis. That small pedestal is just a hint of something radical underneath.
Ian was born in Dublin, the third of four children. He did well in school and was obsessed with lacrosse from third grade onward. He played goalie, never missed practice and got his older brother, Marshall, hooked on the sport in middle school. Ian wasn't as naturally gifted as Marshall, says A.J. Auld, the brothers' coach at Dublin Jerome High School, but he was a maximum-effort player, always positive, a great teammate.
Ian was efficient and methodical in all things—organized as if born into a platoon. He helped his mother Terre run the household by the time he was 8. He sold water and pop to golf fans entering and exiting the Memorial Tournament, spending months collecting ice from the family freezer and scouring newspapers for drink sales. At 14, he started a lawn care company, made business cards, listed himself as CEO. In high school, he created recruiting clips for lacrosse and football players and produced a wedding video for the principal's daughter. He majored in film production and played club lacrosse during his freshman year at Ohio University. He loved Athens.
On June 13, 2010, Ian stood in the ocean off the coast of North Carolina, where the girl he was dating, their friends and a few parents had just arrived for vacation. The water was cold, and Ian was first into the Atlantic. He dove outward. A powerful wave broke on top of him, slamming his head into a hidden sandbar. Ian went limp. His friends carried him to shore, and he was strapped into a life-flight to Virginia. He'd severed his spinal cord between the C5 and C6 vertebrae. The surgeon in Virginia told his family that Ian would be unable to walk or move anything below his elbows ever again.
“I guess the only way I dealt with it was the fact that we still had him, and he's always had such a great mind,” says Ian's father, Doug.
Ian spent several months in a rehab hospital in Atlanta before returning to Dublin, where he began outpatient therapy at OSU until his insurance cut him off. He met Dr. Jerry Mysiw, OSU's medical director of Rehabilitation Services, and routinely bugged him about new medical advances. Mysiw had already started work on the NeuroLife study with Rezai and a team from Battelle, lead by researcher Chad Bouton. Mysiw saw Ian as an ideal candidate—a young, tough former athlete who was willing to sacrifice for the delayed gratification of reaching a goal.
The three researchers explained NeuroLife to Ian: If it worked, the system would allow him to regain use of his right hand. It would only work in the lab. It required brain surgery to implant the microchip and a second one to remove it. The surgeries wouldn't help Ian whatsoever, and he risked losing what little neurological function he'd salvaged.
Ian discussed it with his mom, who compared the situation to her favorite book, “Flowers for Algernon,” and the superior intellect gained and lost by the protagonist after an experimental surgery. “You're going to be able to do something, and they're going to take it away,” Terre told him. Ian's dad said he'd be like a guinea pig. Doug offered to put him in touch with another neurosurgeon to discuss pros and cons. But Ian had already done his research and made the decision. He was going forward, taking the chance.
Mysiw hesitated when Ian accepted, wanting to be sure he understood the ramifications of his decision. You are consenting to have two neurosurgical procedures on your brain that you don't need, Mysiw told him. Why are you doing this? Mysiw remembers Ian's answer. “In part, he said, ‘I owe it to all those other people who, like me, have been hoping for something better. How can I walk away from being able to help make things better?' ”
“Do I have my brain in here somewhere?” asks Dr. Rezai. The neurosurgeon looks around his office in OSU's Davis Medical Center for his model human head. He's been captivated by the brain since medical school and became a star for his work on deep brain stimulation, a surgical procedure to treat neurological symptoms of diseases like Parkinson's.
Rezai was lured away from Cleveland Clinic in 2009 by “a fire in the belly here at Ohio State to create something special,” namely, to establish the university as a leader in neurological treatment and research. The field is coming of age the way cardiac care did decades ago, says Rezai, the director of OSU's Center for Neuromodulation.
The medical device market for neurotechnology is growing at double the rate of the market as a whole, says Bouton, who left Battelle in 2015 to lead the Center for Bioelectronic Medicine at the Feinstein Institute in New York. Several years ago, Battelle's leadership recognized the rising tide of neurotechnology and set out to prove the nonprofit's capabilities. Bouton had already completed a project that allowed quadriplegics to use their thoughts to control computer cursors and motorized wheelchairs, but he was struck by the fact that they still couldn't move their own limbs. That became his team's goal. Battelle could develop the technology, but it needed test subjects and clinical experts to perform the surgeries and help oversee the study, which is where Rezai, Mysiw and eventually Ian came in.
Rezai pulls a model head from a cabinet in his office. The top half is lopped off to expose a veiny, pink, plastic brain. He points to the area where he implanted Ian's microchip, the motor cortex, a band of the brain above the ears on either side. On April 22, 2014, he cut a small window into Ian's skull. He stimulated the brain's pulsating surface, the cortex, and identified the region that controls Ian's right arm. Rezai then placed the microchip, which has 96 miniscule penetrating electrodes, into that precise location and connected it to the pedestal he'd inserted in Ian's head.
After waiting a little over a month for Ian to heal, the team hooked him to the NeuroLife system developed by Bouton and the Battelle researchers. There was just a flicker of movement, a wrist extension. It wasn't very fast or reliable, but it was a monumental flicker nonetheless.
Mysiw never thought he'd see that moment. He'd worked 30 years to help paralyzed patients maintain muscle mass and bone density for the nebulous day when an innovative procedure might restore their movement. Now, it seemed, that day had arrived. The NeuroLife team had high hopes that, with refinement and practice, the flicker could turn into something even more remarkable—the ability to open and close a hand, grasp a mug or pick up a spoon.
Within the first month, Ian was doing all of that.
The researchers seem awed by Ian's progress, yet not completely surprised. After conducting a battery of physical and psychological tests before the surgery, they concluded they'd found the perfect subject in Ian, says Nick Annetta, the project's electrical engineering leader and one of 20 or more specialists working on the cross-disciplinary team at any given time.
NeuroLife is designed to bypass a damaged spinal cord using three major components: the microchip, which records a sliver of the brain's electrical activity and transmits it to an external computer; the computer's algorithmic software, which recognizes patterns in the electrical activity, thereby interpreting the patient's thoughts and forwarding them to the third component, an electrostimulation sleeve that's composed of eight film-like bands of electrodes that wrap around the forearm to spur the intended wrist, hand and finger movements. The microchip sends 2.8 million samples a second, which must be interpreted and sent to Ian's hand in less than eight-tenths of a second or his brain won't register the limb as his own. When he thinks about a movement, his hand obeys about half a second later.
There are a number of kindred projects around the country—exoskeletons, robotic arms and the like—but NeuroLife is the only one that utilizes an electrostimulation sleeve to give a patient's limb restored movement. Ian is its only user. He can stir a straw, he can pour, he can swipe a credit card, he can complete multiple complex tasks in random sequences. He can control individual fingers, which no one felt confident he'd be able to accomplish. And he can play “Guitar Hero.” But he can only perform those feats in the lab.
Herb Bresler, who assumed Battelle's leadership role after Bouton left, describes Ian with superlatives—highly motivated, dedicated, intelligent, amazing, exceptional. David Friedenberg, the head of the algorithms and data teams, provides an anecdote: During a recent lab session, Ian was trying to control the force of his grip to account for picking up different objects, say, a banana versus a hammer. “He had one run that didn't go as well, and I was like, ‘It's OK, Ian. No one's ever done this before. We don't expect you to be perfect,'” Friedenberg recalls. “And he's like, ‘No, I expect myself to be perfect.' ”
Beyond Ian's intelligence and drive, he has a deep understanding of the process, Friedenberg says. The two-minute “Guitar Hero” videos that have garnered worldwide attention omit countless hours of repetition in the lab. Science may be sold by breakthroughs, but it's paid for with glacial tedium.
It's nearly still and silent inside a bottom-floor lab in the Davis Medical Center. Researchers want nothing to distract the most important brain in the room. Ian is plugged into NeuroLife, concentrating on mimicking the motions of a virtual hand on the screen in front of him. A digital gong sounds, ending the routine.
Battelle researcher Mingming Zhang straps a dynamometer to Ian's right hand. It measures variations in the force of his grasp, the banana-hammer test he and the team have struggled to master recently. There's a glitch during the first run, and Ian tells the other researchers to check some parameter or calibration, make sure to save, turn off the recording—he's fluent in the technical jargon. Far from a guinea pig, he's a full-fledged team member, and increasingly, one of its leaders. Researchers often ask for his input and defer to his opinion. It's hard to imagine many other clinical trials operating this way.
Dr. Marcie Bockbrader sits a few feet behind Ian. She's a cognitive neuroscientist and rehab specialist with OSU who has overseen the lab's operation since its early stages, and she says Ian filled the void when Bouton left and Annetta began spending less time in the lab to focus on developing the next phase of NeuroLife components. Bockbrader says Ian is a natural leader because he's the most familiar with the system.
“I like to say I got a crash course in neuro-engineering when I signed up for this study,” Ian says. His ability to comprehend the underlying science and articulate the system's challenges have been crucial to improving NeuroLife.
Rezai and Mysiw are the study's medical directors, and Rezai stops in to check on this session, which typically runs three to four hours twice a week. Ian tells him that he thinks the lab work has improved his strength and coordination—there are changes going on under the microchip. A few weeks earlier, Rezai claimed Ian's brain and the software were both evolving. “This is a beautiful example of brain plasticity and machine learning,” Rezai said. “Evolution is going on together, live, at the same time.”
Friedenberg says it's hard to disentangle how much progress is due to the system learning how Ian thinks and how much is due to Ian learning how to control the system. It raises an imminent question: What happens when it has to interpret someone else's thoughts?
The Food and Drug Administration recently granted Ian and NeuroLife another year together, the third renewal in as many years. The sessions can be exhausting. The time commitment is substantial, and he's only paid a small travel stipend. But he has no interest in stopping; he talks about the study as his social obligation. It's thrilling work for someone who's interested in technology, and after three years, moving his hand is still exhilirating. But the determining factors for his continued participation are his health and the durability of the microchip, which has maintained a high-quality neural signal longer than anticipated. Once the signal falls below a certain threshold, it will be removed.
In the lab, Bockbrader turns her attention to Ian's pedestal, asking him how much it has merged with his mental image of his body. Later, she explains that over time these prosthetics become one with patients' perceptions of themselves. “The other thing that I wonder about, too, is psychologically is it going to feel like he's lost a limb when we're taking some of these things away.”
The FDA approved up to five patients for NeuroLife, and Mysiw is searching for the study's second candidate. It will be difficult to replicate Ian's success; Mysiw was surprised at the intense cognitive skills the system requires of him. The team will screen future subjects to try to find someone who's similarly capable. Simultaneously, Battelle's researchers are working on new algorithms and an advanced electrostimulation sleeve that they hope will be approved by the FDA this fall. But NeuroLife is still many years away from leaving the lab, Gaurav Sharma says, and it needs to become wireless, smaller, faster and more robust.
Since June 13, 2010, Doug Burkhart has only seen his son cry with self-pity one time. Once, in seven years. Terre Hanson Burkhart says she broke down at one point when Ian was still recovering in Atlanta, tearfully telling him that she was having a bad day. He didn't have those, he told her, because he didn't want to waste his time on them. He decided the injury wouldn't define his life.
Less than a year after the accident, Dublin Jerome lacrosse coach A.J. Auld asked if Ian would like to help with the team, in whatever capacity he could. Ian devoted himself, volunteering as an assistant coach for the past seven seasons, using the limited function in his upper arm to steer his wheelchair across the often-muddy field 18 hours a week from February to May. Auld made a habit of telling players: The toughest guy out here is the one in the chair.
Ian earned a business management degree from Columbus State, and he's pursuing an accounting degree at OSU. He has an internship with Klingbeil Capital Management, and he's leaning toward a career in either corporate or tax accounting. He's on track to graduate in December 2018. He had been living in Dublin since the injury, but he moved into his own condo in Harrison West at the beginning of July, another step toward regaining some of the independence lost in the Atlantic Ocean.
Yet he can't really escape the injury. He's the poster boy of NeuroLife, featured on the BBC, CNN, Vice on HBO and in the Washington Post. His condition placed him on stages from TEDxColumbus to South by Southwest. In April, he started the Ian Burkhart Foundation, which focuses on advocacy, raising funding for research and providing financial assistance to patients with spinal cord injuries like his. “So in a roundabout sort of way, I did let it define me,” he says, “but I'm 100 percent OK with that.”
It's unclear when all this will end for Ian, but the day is coming, probably sooner than he or anyone else wants. The pedestal is part of him now, he says, and it will be strange when it's gone. It will be difficult to deal with the loss of restored mobility, but he thinks he's compartmentalized his abilities inside and outside the lab. Bockbrader says it would be a mistake not to include him in some capacity even after the microchip and pedestal are removed. His knowledge and experience can't be replaced. Perhaps he could be a consultant. Whatever the future holds, Ian will adapt. He's resilient, always has been. The greater challenge may be finding a way for NeuroLife to move on from Ian.
In addition to his advocacy and research foundation, Ian has partnered with the nonprofit HelpHopeLive to raise funds to offset his own non-covered medical and living expenses; that website can be found here.