Sergio Membrillas
On a snowy Friday morning in 2005, Jeri Lake was riding her bicycle to the clinic where she worked as a nurse and midwife when a car suddenly drove into her path.
“As far as I know, I hit the brakes to avoid hitting the car,” says the Champaign, Illinois, resident. “I must’ve slipped. I came down hitting the pavement, broke my helmet right behind my right ear. I don’t really remember much about it.”
She continued on to work, but began having difficulty with little things, like how to park her bike.
“When I got into my office, someone noticed very quickly that things were not right, and took me to the emergency room.”
The ER staff told her she had a concussion and to get some rest. But by Monday morning, her condition had worsened. “Everything just went in a period of days. I couldn’t walk, I was crying in hysteria incessantly, I had left-sided weakness.”
As I interview Lake, it’s jarring for me to hear her mention those symptoms, as they’ve also been a big part of my life. When I was a child, I had two strokes that temporarily left me unable to walk and caused left-sided weakness that I still struggle with today, more than 25 years later. Lake tells me, “Somebody could just set a fork down on the table at dinner, and I would just be hysterical,” and I vividly recall crying in elementary school at something as simple as breaking my pencil.
Lake was eventually diagnosed with a traumatic brain injury from her accident. “It got to the point where I couldn’t even produce speech,” she says. “I had all this anxiety and stress and weird things happening in my head; I couldn’t even trust my own thoughts.”
Three years of rehab brought little improvement. Her neurologists told her there was no more that could be done. Muscle weakness, balance issues, memory impairment — these were all things that were just going to be a part of her life now, so she’d have to adapt.
Though now suffering from depression, Lake continued researching treatment and rehabilitation options. “I would search and read stuff on the internet until I had headaches so bad I had to sleep for a few hours and then get up and start again,” she remembers.
Around this time, she discovered the Tactile Communication and Neurorehabilitation Laboratory on Madison’s west side.
It used to be accepted in medical circles that however improved you are with rehab six months after a neurological injury, that’s as good as you’re going to get.
“A lot of conventional wisdom was that the brain is not plastic,” says biomedical engineer Mitchell Tyler. “It is hardwired. And once you lost a function, that’s it. You just learned to adapt to the situation.”
Tyler is the clinical patient orchestrator and one of three lead scientists at the Tactile Communication and Neurorehabilitation Lab, or TCNL. I tell him a bit of my story, about how when I was a child fresh out of brain surgery, the doctors said I’d never even be able to ride a bike or drive a car. I do both now very well — despite a few speeding tickets. Tyler listens intently and says, “At the time, [your neurologists] were exercising the best tools they had. But the tools that clinicians have...are oftentimes 10 years out of phase from what is going on in the research domain and what is possible.”
The TCNL is a UW research lab within the School of Education’s kinesiology department. It works to challenge the notion that the brain cannot heal or adapt. Over the years, more and more research is turning this idea on its head, giving credence to a once rejected idea called “neuroplasticity.”
Neuroplasticity is a relatively new term in medicine. It is the idea that the brain can change when one part of it is impaired. Though the idea has been around for decades, it has yet to really make its way into public consciousness. Writing this story has been my own introduction to it.
Dr. Kurt Kaczmarek says the PoNS helps patients “retrain their brain.”
“What we and other people have been demonstrating is that people can recover a long time after injury — even years or even decades after injury,” says Dr. Kurt Kaczmarek, technological specialist and a second lead scientist. “What we are trying to do with our subjects — our volunteer human subjects — is we are helping them to retrain their brain. Well, how do you retrain your brain? You practice, practice, practice.”
It is an idea that has yet to be widely accepted by the medical profession.
The lab — which is supported 100% by grants, contracts and gifts — has seen patients with multiple sclerosis, cerebral palsy, traumatic brain injuries, strokes and other disorders, many of whom have made drastic improvements at the lab.
“The preliminary results to date suggest that most individuals who have complied with the training regimen have seen improvement in some of their symptoms,” Kaczmarek tells me.
To find out how exactly this is so, I sit down in the lab for nearly two hours with Dr. Yuri Danilov, a neuroscientist and research specialist and the third lead scientist. Over the past 15 years, he’s personally advised and participated in the recovery of about 2,000 people. He kindly talks me through the history of the lab and their research as I write down key phrases I’ll need to Google later. “Sometimes for us, it is a hard time to believe it’s possible to see what we see,” he says.
But he repeats a dearly held tenet of the lab: “A brain is flexible at all ages.”
What do they do differently from other labs to get the positive rehab results I’d read about? Danilov shows me videos of former patients he’s treated.
One is of Jeri Lake.
Lake received an invite to the lab in 2010. That September, when she and her husband made the four-hour drive to Madison, they blocked the back windows with drapes because too much stimulation made Lake nervous and exhausted.
On her first full day at the lab, the scientists performed a baseline study. The first video Danilov shows me today is of a woman hunched over, gingerly shuffling her feet down a hallway, perpetually on the brink of falling over.
Part of this test included stepping over a shoebox; Lake barely made it.
After the study, the team broke for lunch. Lake, too overstimulated to eat, as she now describes it, opted instead for a quiet place on the floor to rest. Danilov had other plans: he wanted her to exert herself further. “I’m assuming you’ve met Yuri by now,” she later tells me with a laugh. If he wants you to get up, she says, “you will get up.”
Montel Media
Dr. Yuri Danilov assists Jeri Lake with rehab. Using an electronic tongue stiumlator, the lab helped Lake dramatically recover from a 2005 bicycle accident. Lake says the PoNS “gave me my life back in a form I can recognize.”
The studies Danilov wanted to perform involved a small rectangular box — similar to, but lighter than the battery on a MacBook charger — with a small tongue depressor protruding out of it. This is called a Portable Neuromodulation Stimulator, or PoNS. It was developed at the lab. The team blindfolded Lake and instructed her to stand for 20 minutes with this strange thing in her mouth.
Lake, more than willing to try anything at that point, did not think she could handle the first day of tests — or even the first test.
“I didn’t think I was going to make it,” she says, of the standing test. “I didn’t think that 20 minutes was ever going to be up.”
When that was over, Danilov instructed her to go to the next room to a treadmill. Still hunched over, dejected, and convinced that being exhausted was not going to help, she shuffled on.
Lake tells me a psychiatrist in the next room asked her how she was feeling.
“I kind of turned my head around to look at her and I said, ‘I....’ At that moment, it hit me that I had just turned my head. I hadn’t turned my head in six years. That was beyond my wildest imagination of what could ever happen.”
She started to cry. Her husband, too. At that she committed fully to the intensive weeklong therapy that followed. She attended six hours of PoNS sessions a day. The research team had to teach her how to walk again, to move smoothly and to swing her arms in tandem with her legs.
In the week Jeri spent in the lab, her balance, gait and depth perception improved dramatically. Her speech began to improve, too. Repaired cognitive function came more slowly. But these changes were far more drastic than anything she’d ever dreamed of.
The PoNS sends electrical impulses to people through the tongue.
The name PoNS is a bit of a play on words. The pons is also an area of the brain that deals with sense and motor function. In the lab, the PoNS is referred to simply, yet ethereally, as “the device.”
So what is the device?
“It is a pulse generator, in essence,” says Kaczmarek, the electrical engineer who designed it.
The device sends electrical impulses into the central nervous system via the tongue using the attached tongue depressor. The tongue as a door to the nervous system was chosen purely from a technical standpoint, Danilov says. It has a fluid surface, a constant pH, constant temperature, and it’s electro-conductive. “You couldn’t find anything on your body that has the same sensitivity and tactile resolution,” he says.
“It is definitely not a normal, everyday experience, except for those who stick 9-volt batteries on their tongue,” Kaczmarek says.
Kaczmarek’s research background is in medical instrumentation. In the 1990s, the TCNL discovered that stimulation of the tongue with electrical pulses had very positive impacts on people with neurological disorders pertaining to motor function, senses, mood, memory and speech.
“That is a bit of a hump to get over for individuals who are looking for help,” Kaczmarek says. “How can doing something here,” he says, pointing to his tongue, “possibly help what’s going on here?” and he points to his foot.
Kaczmarek lets me try the device. The tongue depressor has many tiny electrodes on the end that tickle, but it’s not uncomfortable because I get to control the pulses’ intensity with two tiny buttons.
This is much different than the rehab I went through as a kid. Between the ages of 3 and 6, my mother hauled me off weekly and sometimes daily to physical and occupational therapy. For two hours a day, I’d do different balance and dexterity exercises. It took years for me to get to a functional level. Being so young, this was still easier for me to do than an adult in a similar predicament.
With the PoNS on my tongue, I absent-mindedly contort my left hand — the one that was affected by my strokes. I’m hoping the stimulation will help me use my left hand just as well as my right, something I’ve never quite managed years after rehab.
The PoNS doesn’t have any noticeable effects on me, but 30 seconds can’t compare to a full-time inpatient therapy session. Still, hearing and reading about the PoNS now, I’m elated that there might be a future in which others won’t need months or years to recover.
Jeff Miller/UW-Madison
The late Dr. Paul Bach-y-Rita founded the lab that developed the PoNS.
It would be difficult to write a story about the Tactile Communication and Neurorehabilitation Lab without mentioning its founder, Dr. Paul Bach-y-Rita. The neuroscientist’s name pops up anywhere that this lab is mentioned.
In the 1960s, brain mapping, or attributing different body functions to areas of the brain, dominated the neuroscience community. “Everybody in the world believed the brain was hardwired,” Danilov says.
But Bach-y-Rita had a different theory.
“He said the brain is plastic,” Danilov says. “The brain is highly changeable, manageable, and environment can mold the brain functions. It was heresy.”
“Paul was quite comfortable being a provocateur, challenging the system and challenging conventional wisdom,” adds Tyler. “He kind of reveled in it — which was great, but it also caused a lot of controversy.”
One of Bach-y-Rita’s “heretical statements,” as Danilov calls them, was that if you have a broken sensory system like vision, you can replace it with another healthy sensory system. And to prove that he was right, he built a machine using an old dentist chair with hundreds of small pins on the back. He then used a video camera to point to different objects. Whatever object the camera pointed at, the pins would press its image into the backs of the blind subjects who sat on the chair. Danilov relates this anecdote while showing me videos of a blind man sitting in the chair while the camera points at a telephone. The man is thus able to identify the object and even the fact that the receiver is off the hook — all based on the shape of the pins on his back.
“Everybody was excited,” Danilov says. “Everybody around the globe published an article about how people can see through the skin.”
Brain imaging has even shown that the areas of the brain commonly thought to be reserved for sight are activated in blind people who used this device, disproving the “use it or lose it” mentality that once prevailed in neurology.
“The brain is actually much more malleable than we give it credit for,” Tyler says.
Tyler remembers his introduction to Bach-y-Rita’s work while an undergrad at the University of California-San Francisco. “What I was hearing was both mind-boggling and exciting and a little threatening. Not everything was fitting nicely into the way that I had been studying the nervous system.”
Tyler moved to Madison in 1987 to study with Bach-y-Rita and “to harness modern technology for the purpose of rehabilitation — specifically neurorehabilitation.”
This lab has been his passion since.
Bach-y-Rita, who died in 2006, famously said you don’t see with your eyes, you see with your brain. A much smaller version of that dentist chair is being sold today, but in a form that no one in the lab quite anticipated.
Wicab Inc. of Middleton, a company also founded by Bach-y-Rita, is selling the BrainPort, which uses the same technology developed here at the TCNL: the same tongue depressor and electric impulses used for the PoNS are now equipped to mimic those hundreds of pins that once vibrated on blind subjects’ backs.
How does it work anyway? How does an electrical impulse generator placed on the tongue during physical therapy result in such dramatic improvement?
Well, they don’t actually know.
“I think we are up to 29 theories now,” says Tyler. “They are not mutually exclusive. They’re all facets of a vastly complex process. They are all probably true to a greater or lesser extent.”
Kaczmarek says they theorize that in adding the PoNS tongue stimulation to physical therapy, “it somehow primes or predisposes the brain to be more plastic or more adaptable in learning how to conduct those movements more fluidly, more accurately, and more precisely.”
Danilov envisions neural pathways to be much like a system of roads between two cities: You may have your preferred route to get from A to B, but what happens when there is a roadblock? Danilov says you simply find another way to your destination. It may take some time to get used to, but taking this new route will become second nature.
That is what your body must do with motor function and establishing new neuro-pathways.
The team has pages upon pages of data and published scientific articles that prove that the PoNS works, but still must win over remaining skeptics in the greater medical community.
“Skepticism is good as long as there is a willingness to look at the results and engage in ideas to learn from that experimental process,” Kaczmarek says.
The team is currently in the middle of a double blind study to meet an FDA regulation for approval. They began these clinical trials in May 2014, and Tyler hopes that they will have FDA approval by the middle of 2017.
“The landscape is completely naked in terms of information about how the PoNS works, so we are creating that knowledge base,” Tyler says. “We are literally writing the book on this.”
As for Jeri Lake, the woman I speak to on the phone — so quick with a laugh, and so willing to discuss such a trying time — is a far cry from the one she described from years prior.
“I am not confined to my home,” Lake says happily. “I can ride my bike. I can travel with my family. I volunteer with brain research. The PoNS did not give me the same life I had before, but it gave me my life back in a form I can recognize.”
“For many people who didn’t have hope at all, we open the doors,” Danilov says.
The team shies away from words like “miracle,” reiterating that it is very hard work and dedication on the part of the patient.
“That’s why no miracles, it’s pure anatomy and physiology,” Danilov says in a tone that suggests this is not up for debate.
Though the results that Lake saw on her first day were wonderful, they are not typical. Nor was her turnaround. She did a 100-mile bike ride months after her first visit to the lab. “I was in shock,” Danilov says.
“Is everyone going to respond dramatically? No,” says Tyler. “And that’s the thing we have to counsel people on is to not have too high of an expectation, because if it doesn’t meet their potentially unrealistic expectations, they are going to be disappointed.”
Today, my own motor impairment is only noticeable to myself. The most I need to do occasionally is explain why I walk a little strangely. But for those in far worse shape, I can only imagine the sense of relief that will come upon a successful rehab using the PoNS.
I think Lake sums it up best: “It’s going to be a very sweet day when that FDA approval goes through.”
