The sounds of the brain echo in the low-lit operating room at Shands at UF — sometimes static, sometimes a pinging sound like a submarine. And sometimes, silence. Everyone is still and quiet in the dark, except for John McCabe. McCabe’s feet, dressed in the standard hospital-issued baby-blue footies, stick out from underneath a white sheet and blanket on the operating bed. The tremors in his right leg and foot kick the covers out of place, and the nurse pulls them back down so he stays warm. McCabe is awake as an electrode is slowly lowered through his scalp and skull and into his brain. He’s counting on the deep brain stimulation surgery and the team of specialists with the UF Movement Disorders Center to give him his body back from the Parkinson’s disease he has faced since 1990.
Guided by international leaders in neurology and neurosurgery who work with faculty and researchers from 14 different specialty areas, the center is a destination for people who suffer from movement disorders such as Parkinson’s disease, tremor disorders, dystonia, Parkinsonism, Huntington’s disease, Tourette’s syndrome, myoclonus and ataxias.
While its DBS program is currently one of the most prominent in the nation — the team of specialists performs more DBS procedures annually than any other medical facility in Florida — the center’s research program continues to grow in all areas. To accommodate the center’s extraordinary progression, the team will move to a new facility this spring and be renamed the Center for Movement Disorders and Neurorestoration.
In contrast to the overhead spotlight focused on McCabe’s head, there is a soft glow that lands on the face of Michael S. Okun, MD ’96, a neurologist and movement disorders expert in the College of Medicine. The glow comes from the oscilloscopes that depict the firing patterns of the cells in McCabe’s brain. The sounds are signals; neurons in the brain that, as they fire, tell Okun and Kelly D. Foote, MD, co-directors of the CMDNR, the location of the electrode. Together, they look and listen for a specific place in the depths of McCabe’s brain that, when stimulated by the electrode, will hopefully stop the tremors that have become unbearable.
Parkinson’s disease affects 1 million people in the U.S. and 6 million people worldwide. The number of diagnoses in America increases by 50,000 to 60,000 each year.
“At some point, in 23 to 25 years, there will be more people over 50 than under 50 in this country and with the average age of diagnosis at 50 years old, it’s a steep upward slope,” said Joyce Oberdorf, president and CEO of the National Parkinson’s Foundation.
McCabe, 72, was diagnosed two years after his symptoms began.
“I started experiencing a strange feeling in my right arm where it wasn’t moving along with my body when I walked, and it scared me,” he said. “I didn’t know what Parkinson’s was, but I had a feeling it would progress quickly.”
Parkinson’s is degenerative. There is no cure and the jury is still out as to why people get it.
“The cause is neither solely genetic nor environmental,” said Foote. “What we think is that most people have a genetic predisposition to it and have perhaps encountered something in their environment that brings it out.”
Physicians do know that Parkinson’s symptoms arise when the substantia nigra in the brain degenerates, and several other circuits follow. This slows production of dopamine until patients find themselves in the Parkinson’s trap.
Tremors are just one of the cardinal motor symptoms of Parkinson’s disease, and 20 percent of sufferers do not experience tremors. Others include rigidity or stiffness, akinesia and postural instability. Akinesia causes patients’ bodies to appear frozen while postural instability is when their leaning posture causes them to fall.
“I held it in check for more than 15 years with medication until the last three years or so,” McCabe said.
Then he started to fall asleep during the day, without warning.
“I woke up and the airbag was on me. It happened at a red light. I blacked out before I hit the car in front of me while going about 30 miles an hour,” he said. Eventually, McCabe had to give up his driver’s license.
“It was the hardest thing I ever had to do; it took away my independence.”
At one point McCabe was on as many as five medications. The medications no longer worked, and his tremors could not be controlled. He could not write a check. He could not type or use the computer to do the accounting for his church. Jacky, his wife, helped him shave, tie his shoes, button his shirts and fasten his belt. She also cut McCabe’s food into little bites that he would try to eat with a spoon. Being able to go out to eat was the thing he missed most, he said.
“Those were my darkest days,” McCabe said.
He decided he had to do something. That’s when he met Okun and Foote.
At the start of surgery, the operating room is bright with light and chatter. There are nearly 20 people in the room. Some are part of the team, but a large group of visiting doctors from Japan, the Philippines and Thailand are there to watch and learn.
Okun and Foote are used to having visitors observe the DBS surgery. Since they were recruited in 2002, they have put UF’s CMDNR on the map in terms of care, research and treatment of movement disorders.
“We both study the brain and the central nervous system, but each of us come about it from a different perspective,” Foote said.
During the DBS procedure, Foote, a neurosurgeon and engineer, is the driver. He inserts and lowers the probe into the brain based on Okun’s interpretations of what he hears and sees.
Okun, a neuroscientist and neurologist, is the navigator. He interprets the language of the brain and tells Foote when to recalibrate or lower the probe.
The two met in 1994 during residency training at the COM. Foote, an associate professor of neurosurgery, came to UF to complete his general surgery internship and residency training in neurological surgery, which included one year of training in stereotactic and functional neurosurgery. Okun, an associate professor of neurology in the COM, completed his residency at UF in neurology.
After Foote moved on to study movement disorder neurosurgery and deep brain stimulation at the Universite Joseph Fourier in Grenoble, France, the two met once again at Emory University. At Emory, Okun trained in general movement disorders, microelectrode recording and surgical treatments.
Ramon L. Rodriguez, MD, the CMDNR’s clinic director, joined the team in 2003 as a fellow in training and stayed on as a faculty member. He developed an interest in Parkinson’s disease and movement disorders while at the University of Texas Medical Branch, where he completed an internal medicine internship and neurology residency under Tetsuo Ashizawa, MD, executive director of the McKnight Brain Institute and chair of the department of neurology. “They make up a very powerful team and are considered one of the best in the field nationwide,” said Oberdorf, of the NPF.
The team of specialists is frequently asked to speak about movement disorders throughout the world. Okun serves as NPF’s national medical director, and Foote and Okun frequently teach courses and host international physicians on how to perform the surgery. The center offers the country’s only National Institutes of Health-funded study on DBS for multiple sclerosis and has the only two NIH-funded study’s for DBS in Tourette syndrome.
“They are young, energetic and always available to us,” said Rick Staab, founder of Tyler’s Hope for a Dystonia Cure. The trio cares for Staab’s son, Tyler. Okun diagnosed Tyler, then 7, with the movement disorder dystonia. Staab has since worked closely with the CMDNR team.
“They believe that it is a curable disorder, and they get together and passionately pursue the involvement of people who can get us to that point,” Staab said.
One important step in that direction is the upcoming move.
“This center in a lot of ways is already a model, but we would like it to be the model,” Okun said. “We already have a lot of visitors come to the center to learn how we do things, but the model for the new center can be rolled out across multiple diseases and across multiple specialties at UF and around the world.”
But their main goal is to give hope to patients like McCabe.
McCabe remembers the moment during surgery when everything changed. Okun asked him to move his arm and fingers to test whether the probe was in position.
“He asked me to tap my index finger and thumb together in repetition,” McCabe said. This simple task was something he never imagined he could do again. And in an instant, McCabe said he realized what Foote and Okun had given him.
He remembers thinking, “I got my right hand back!”
While McCabe and Jacky are ecstatic about the outcome, the CMDNR team is constantly advancing. The move from their current location at Shands at UF to the fourth floor of the UF Orthopaedics and Sports Medicine Institute represents a fundamental shift in the delivery of patient care.
“We live in a classical system where the physician is usually the center of care, and the patients and caregivers orbit around them,” said Okun. The patient-care model the CMDNR currently follows places the patient at the center, but it takes several visits for him or her to be evaluated by CMDNR’s neurologist, neurosurgeon, neuropsychologist, psychiatrist, social worker, occupational therapist, physical therapist and speech pathologist.
“Our patients will be able to come to the center and potentially in a single visit pass through the process and move toward surgery quicker, so the delay isn’t weeks to months to get them on the table,” Okun said.
The proximity to these disciplines will also enable the CMDNR to expand the research as well as access to clinical trials.
“We believe that excellent care and listening to the patient and figuring out what the problems are should drive the research areas,” Okun said.
Early on, Okun and Foote sought to understand how circuits in the brain worked and how they could develop therapies for people with movement disorders. The work led to the discovery that neuromodulatory treatments like DBS can be used to treat symptoms of obsessive compulsive disorder, Tourette’s syndrome, depression, memory loss and Alzheimer’s disease.
Okun and Foote believe that this new model of care will better serve the patient.
“Not only can patients get the care, but if there’s something new, they can get the hope,” Okun said. “The care comes with the hope and it comes in this single package.”