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The Man with the Bionic Brain
And Other Victories over Paralysis
Jon Mukand
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eBook - ePub
The Man with the Bionic Brain
And Other Victories over Paralysis
Jon Mukand
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About This Book
A behind-the-scenes view of cutting-edge medical research and discoveries that are helping people with disabilities regain control, this book is an insightful look into the possibilities of technology and the associated ethical, political, social, and financial controversies. After he was stabbed and paralyzed from the neck down, Matthew Nagle, a former high school football star, made scientific history when neurosurgeons implanted microelectrodes in his brain that recognized his thought patterns, allowing him to control a computer cursor. With the BrainGate system he was able to use e-mail, manipulate a prosthetic hand, adjust TV settings, and play video gamesâall just by thinking. Dr. Jon Mukand, his research physician and a rehabilitation specialist, weaves together Matt's story with firsthand accounts of other courageous survivors of stroke, spinal injuries, and brain trauma and the amazing technology that improves their lives. Not only a discussion of scientific advances in the battle against paralysis, The Man with the Bionic Brain is an inspirational book about how biomedicine gives hope to people with disabilities and enables them to take control of their lives. Jon Mukand, MD, PhD, is rehabilitation medicine specialist and medical director of the Southern New England Rehabilitation Center and serves on the clinical faculty of Brown University and Tufts University. He is the editor of Vital Lines: Contemporary Fiction about Medicine, Articulations: The Body and Illness in Poetry, and Rehabilitation for Patients with HIV Disease. He lives in Providence, Rhode Island.
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1
At the Gateway to the Brain
Matt, June 22, 2004
Adrift on anesthesia, Matthew Nagle lay still in the neurosurgical intensive care unit of Rhode Island Hospital, his shaven scalp discolored by a brown antiseptic and covered by a white turban of gauze dressing. Plastic hoses connected the tube in his throat to the ventilator that hissed and puffed and hissed and puffed into his lungs.
While a high school senior in 1998, Matt had galloped across football fields, two hundred pounds of muscled energy charging at opponents; he set a record for unassisted tackles that was featured in the Boston Herald. Now twenty-three, he had a severed spinal cord, and his limbs were completely paralyzed. Swaddled in white hospital sheets and floating on a special bed to prevent bedsores, Matt had just had brain surgery as the first human volunteer for the BrainGate Neural Interface System. Sinuous green waves raced across the monitor as his heart, strong as ever, pumped out twenty liters of blood every minute. There had never been a question about Mattâs heart while the BrainGate research team planned his surgery.
I touched Mattâs upper shoulder, the only place other than his head and neck where he could still feel human contact. My hand appeared dark brown against his pale skin, which seemed bleached by the fluorescent lights of the hospital.
âMatt, howâre you feeling?â
Slowly his eyelids opened, a trace of a smile on his face. Then his eyes closed again, the right faster than the left. I felt an infusion of relief; Matt had just winked at me. My grip loosened on the cold rails of his KinAir bed, and I smiled back at my young patient, who drifted away, back into postoperative sleep.
The pill-sized BrainGate implant was now on the surface of Mattâs right brain (see figure 1.1 in the gallery). A hundred microelectrodesâeach thinner than a hair and a millimeter longâsent fine wires to a titanium pedestal, about the diameter of a nickel, that protruded from Mattâs head. When the skin healed, a fiber-optic cable would connect Matt to a computer that analyzed and stored his brainâs electrical nerve signals.
Ifâand this was my clinical careerâs biggest ifâthe experiment succeeded, Matt would control a computerâs cursor by only thinking about it, just as though he were moving a computer mouse with his paralyzed hand. That would remove a few links in the chains of his paralysis.
As a clinical investigator for the BrainGate study, I had discussed with Matt and his parents the many risks and potential benefits of the implant. Doctors, nurses, neuroscientists, and clinical engineers had planned every step and coordinated all the details, along with Cyberkinetics Neurotechnology Systems, Inc., the company formed by researchers at Brown University to develop the BrainGate. I remembered the research teamâs excitement as we worked on this revolutionary technologyâbut I also recalled moments of fear that our dreams for the BrainGate would end in disaster.
I told myself to calm down. Almost a decade of studies with monkeys had convinced the Food and Drug Administration (FDA) and three institutional review boards (IRBs) to approve a study of the first human BrainGate implant. Feeling less nervous, I reflected upon Mattâs journey into disability and upon his yearning to overcome paralysis through the BrainGate, stem cell therapy, or any other technology.
A nurse dabbed Mattâs face with a damp cloth. He was sweating in response to the stress of surgery.
âPlease be careful near his nostrils,â I said. âHeâs got MRSA; itâs not that far from his nose to the incision.â
The nurse looked taken aback, but it was clear she understood my fear that methicillin-resistant staphylococcus aureusâa variant of the benign bacterium we all harborâmight infect Mattâs surgical wound. She moved the washcloth away and promised to pass on my concerns to the other nurses.
I left to find Mattâs parents, Ellen and Pat Nagle, who were waiting downstairs. Standing near the elevator on the hospitalâs sixth floor, I stared out a large tinted window while familiar questions streamed into my brain with the sunlight. What did the BrainGate study mean for people with severe paralysis? Why had Matt subjected himself to this experiment, the first on a human being? Why had he, after having been paralyzed, undergone yet another metamorphosisâthis one almost turning him into a cyborg? Why had his parents allowed him to do this? I also thought about my role in recruiting Matt for the study, which had many risks and only nebulous chances for success.
Led by John Donoghue, the chairman of Brown Universityâs neurosciences department and a cofounder of Cyberkinetics, our research team had designed the study to answer the following questions:
- Would the device be safe in human beings and not cause complications such as brain infections, bleeding, seizures, or any of the twenty-eight other adverse events listed on the informed consent form?
- Would the implant record signals from single neurons, and do so reliably?
- Could the BrainGate use these recordings to function as a neural prosthesis, like a bionic brain?
- With the BrainGate, would a paralyzed patient be able to control a computer cursor through thoughts alone?
- Finally, would the device allow advanced uses, such as controlling a television or opening e-mail? (The possibility of playing video games had also excited Matt, but this wasnât mentioned in the thick protocol submitted to the FDA.)
While training in rehabilitation medicineâalso known as physical medicine and rehabilitation or physiatryâI had developed an interest in spinal cord rehabilitation. During and after my residency at Boston University, I treated many patients with spinal cord injuries due to car accidents, falls from buildings, dives into shallow pools, gunshots, ruptured aortic aneurysms, bicycle accidents, and stabbings. Each of these patients taught me about the complexities of this tragic condition that affects almost every bodily system. They taught me about kidney failure, surgical bowel complications, pneumonias that start out as colds, fevers from infections or from staying out in the sun too long, festering pressure ulcers, urinary infections that lead to septic shock and death, fractures in bones leached out by paralysis, and depressionâwhich led one of my patients to use his carâs hand controls to drive off the road and into nothingness.
What would Matt Nagle teach me?
Through the glass corridor, I saw a small maple tree in a cylindrical white planter, its dark red leaves twirling in the summer breeze, and I imagined its roots circling in search of new, nourishing soil that would allow the imprisoned tree to grow taller and wider in the sun and the wind. I stopped at the physiciansâ lounge to call my wife and give her a quick update. Giselle, also a physician, had some misgivings about the BrainGate project, but she supported my research activities. She was relieved to hear about Mattâs surgery and passed on the news to our children, Nita and Jacob, who had seen me on TV in connection with the research and found the project fascinating.
At the café, two of my BrainGate colleagues were relaxing after the surgery. I briefly sat down at the marble-top table and raised my coffee cup in congratulations.
âYes, the surgery was successful and the patient survived, but weâll have to wait and see about the BrainGate,â Burke Barrett said. As vice president of clinical operations for Cyberkinetics, he was right to be cautious.
âI feel good about the implant,â Dr. Gerhard Friehs said. Still wearing his green scrub suit, the lead neurosurgeon moved his head around to relieve the tension in his neck.
âHow soon can we test the system?â Burke asked, and sipped his coffee.
âMattâs young,â Gerhard said, âso he should heal fast. But the drainage has to settle down. Iâll let you know.â
I left Burke and Gerhard to go outside and greet Ellen and Pat Nagle, who had been at the hospital since dawn.
âHeâs fine,â I said. I pulled up an outdoor metal chair and joined them on the brick patio under a tall, shady beech. âMattâs a tough guy; his heart and lungs are in great shape.â
âYou know, he was one hell of an athlete,â Pat said, closing his right hand into a fist and shaking it for emphasis.
âHe sure put on a great performance today,â I said.
âHeâll never quit,â Pat said. âLet me tell you about when he made MVP.â
Mattâs final high school game was against Walpole, which had a running back who went on to play college ball. The winning team would go to the Massachusetts Super Bowl, so Matt had to win. On the defensive line, he kept getting blocked, but then he got through just before the handoff to the star running back. Matt had him in his sights until his opponent did a little shake, and Matt got faked out. The star went right by him. Matt was knocked down while his opponent, eighty yards from the end zone, was on his way to a touchdown.
Matt jumped up and ran, pumping his arms and legs like pistons, breathing fast and shallow to get just enough oxygen to keep his muscles burning. He shocked the running back at the five-yard line and pulled him down. The crowd went wild, the Weymouth fans rising up in the stands to clap and yell and scream at the heart-racing defensive play. Even a few of the Walpole fans clapped surreptitiously. The other team rushed for the remaining yards, scored, and eventually won, but Mattâs play was the gameâs highlight. A reporterâs photograph showed Mattâs back with a blurred â21â on his jersey, his left hand clenched in a fist, and his right leg charging forward as he reached for the running back.
For their performances, Matt and his buddy, Mike Romig, won the Weymouth Football MVP award and a thousand dollars to put toward college. But a game like that deserved a celebration, so they spent their money on kegs and food for a party with their many friends.
The Nagles were silent after Pat finished his story and came back to the present. Ellen stared down at her coffee and quietly said, âBut it all ended three years ago, Independence Day. It all endedâŠ.â
Until now, I had neither asked nor heard the details of what had happened to Matt on Wessagusset Beach in Weymouth. I brushed away a serrated leaf that had fluttered down onto the wrought-iron table.
âThe thing that really gets me is that Mattie was hurt about three years ago, and I still canât talk about him without âŠâ
Pat wiped away some tears and smiled ruefully. He no longer had the toughness of a cop built like a linebacker, the homicide sergeant who had cracked one of the most infamous murder cases in Cambridge.
âItâs just horrible, a nightmare that doesnât end. I always thought I was stronger than that, you know?â
Ellen placed her hand on her husbandâs muscular forearm.
Under the dense green foliage, the Nagles described how Matt was severed from his life as a fun-loving star athlete, stripped of his strength, and humiliated by his basic bodily functions. Because of his condition, Matt cheered on researchers who were racing to treat severe disability with brain implants, electric limbs, or stem cells. These technologies gave rise to teams that were striving to treat human spinal cord injuries. At stake were millions of dollars, scientific careers, and academic prestige. Brain implants compensated for paralysis via an end run around the damaged site, the static line of scrimmage. Limbs could be implanted with electrodes that sent electric currents to stimulate muscle movement. Stem cells healed the body from within, through natural mechanisms of repair.
And, although completely paralyzed and no longer on the football field, Matt was also racing. He was in a race against time, a race to get a computerized brain implant, an electrode system, stem cells, or any other technology that could cure his spinal cord injuryâbefore he died from its many complications. Based on his clinical status, Matt could expect to live to forty-five. With paralysis, sensory loss, abnormal movements, bowel and bladder incontinence, pain, and sexual dysfunction, Matt was one of the most disabled people I had ever met. Over the years, I talked on many occasions with Matt and his parentsâas well as relatives, friends, doctors, caregivers, priests, teachers, coaches, Cyberkinetics researchers, electrode-implant manufacturers, stem cell scientists, and journalistsâto understand and describe his story and his dream to regain movement, any movement, anywhere in his body, through any means.
2
The Hunting Knife at the Beach Party
Matt, July 3 to 15, 2001
On July 3, 2001, Matt went to the Fourth of July celebration at Wessagusset Beach, a popular inlet with a seawall to protect the adjoining road and houses. He wanted to watch the fireworks, have a few beers, and catch up with old friends. Before the roads to the beach closed, Matt and his friends gathered at a nearby house. This was an ideal way to avoid traffic and the cops, who prowled the beach because, every year, a fight or a drug deal or a car accident would occur. By evening, about three hundred people had danced onto the beach anyway, carrying their six-packs and boom boxes. It had rained, bu...