Imagine having a perfectly sharp, clear mind, yet being totally helpless.
That is the life of millions of people who have severed or seriously hurt their spinal cords, had certain kinds of strokes, or are in the advanced stages of degenerative nerve disorders such as Lou Gehrig’s disease.
Hundreds of thousands more are deaf or blind because of damage to their ears or eyes, despite having fully functional brains.
And millions have healthy, functional bodies and sharp, clear minds but are crippled in a completely different way: Due to some kind of misfire in their brains, they are barraged with obsessive thoughts, or overwhelmed by despair.
Scientists have been working for years to help these people through pharmacology, stem-cell research and more. Last Monday, a conference at Brown University focused on one particularly alluring field: neurotechnology.
The event was the fifth annual Frontiers of Healthcare Conference, created by Brown and U.S. Rep. Patrick J. Kennedy to highlight major advances in medicine and the public-policy issues they raise.
Why neurotechnology this year?
For one, it’s a hot topic. Last month, a bipartisan team including Kennedy introduced a bill designed to foster discoveries and bring advances to market more rapidly through a $200 million-a-year National Neurotechnology Initiative.
The measure would invest $5 million to create a national neurotechnology coordinating office; pump $155 million into National Institutes of Health programs that support the commercialization of research; give the U.S. Food and Drug Administration $30 million to hire neurotechnology experts and set new standards for preclinical and clinical trials; and set up a $10 million research center to study ethical, legal and social issues.
“The brain is the most important component of the human body,” Kennedy said in announcing the legislation. “With so many Americans suffering from brain-related illnesses, it is crucial for us as a society to maximize our efforts and continue learning about the many facets of the brain.”
Neurotechnology is also a priority for the U.S. military right now because so many soldiers are returning from Afghanistan and Iraq with missing limbs and other grievous injuries. Developing cutting-edge prosthetics and assistive technologies is seen by many as a moral imperative.
And at Brown, where some of that prosthetics work is being done, neurotechnology is a thriving field, with 80 faculty members in 11 disciplines are collaborating through the Brain Science Program.
Monday’s conference kicked off with a presentation by Brown neuroscientist John P. Donoghue, director of the Brain Science Program and founder of Cyberkinetics Neurotechnology Systems Inc.
“We are at the dawn of a new era of neurotechnology,” Donoghue said, noting that decades of research is now beginning to pay off. But how far that goes, he said, depends on continued collaborations not only across scientific disciplines, but between government, academia and business to finance breakthroughs and speed their entry into the market.
BrainGate, Cyberkinetics’ signature project, is based on the notion that for every movement, there are neurons that fire in the brain, and if you can get the neurons to fire just by thinking about the movement, and connect those neurons to sensors, you could control movement with your thoughts. By implanting hair-thin electrodes in a patient’s motor cortex to capture neurons at work, Cyberkinetics has been able to take telekinesis out of the realm of fantasy.
Donoghue showed videos of one paralyzed man moving a prosthetic hand with his mind and gasping in amazement.
And Donoghue was just one of several presenters. In “interviews” moderated by Joe Palca, a National Public Radio science correspondent, three other scientists and four people who have benefited from neurotechnology spoke about cochlear implants, retinal prosthetics, deep-brain stimulation and gamma-knife surgery used to control psychiatric disorders, and electrical stimulation to restore muscle function.
This being life-changing technology, the whole day’s discussion was unusually personal, providing direct, even intimate, insights into how these breakthroughs affect real people.
Mario Della Grotta, of Cranston, the first person ever to receive deep-brain stimulation to treat obsessive-compulsive disorder, spoke about spending 14 to 18 hours a day counting, hoarding, memorizing phone numbers and repeating rituals, compelled to do so by a misfiring brain.
“I was a prisoner in my own world,” he said.
In February 2001, at Butler Hospital, Della Grotta underwent surgery to have electrodes implanted on the edge of his brain. They release tiny currents that tame the obsessive thoughts – not entirely, he said, but “about 80 percent.”
Gerry Radano, of Westchester, N.Y., who underwent gamma knife surgery to treat her own OCD, has become an advocate, campaigning to make the procedure widely accessible, and not a rarity as it is now.
“The future is absolutely wonderful,” Radano said, “but we have to move forward.”
Then came Jennifer French, of Tampa, who snowboarded off a cliff and broke her neck in 1998.
“Within a flash you become dependent on everyone for everything,” French said. “You can’t go to the bathroom, you need to be fed, bathed, clothed. Your whole life stops, and you have to slowly pick up the pieces again.”
A year and a half later, French underwent surgery to have electrodes implanted in her back, buttocks and legs, all connected to a receiver implanted at her hip and controlled by a wireless device she wears around her waist. It’s called the “functional electrical stimulation” system, developed by P. Hunter Peckham, a biomedical engineer at Case Western University in Cleveland.
French showed the audience how the device works, first demonstrating how it enables her to control her torso and sit upright – which she can’t do on her own – and then using it to control her legs enough that she could stand up from her wheelchair, using a walker for support. She shared a photo from her wedding: With this device, she was able to walk down the aisle.
“You don’t need to have every bit perfect,” she said, urging scientists not to be discouraged by the small impact that devices like BrainGate and her prostheses seem to make. For people like her, she assured them, “a little is a lot.” •
