Illustration of deep brain stimulation.Photo:
Wikimedia Commons | Andreashorn.
On July 11, 2015, eight people crowded into a clinic room at UW Medical Center, expectantly watching Steven Gilbert.
They included his neurologist, neurophysiologist, and his partner of more than two decades. All recognized the debilitating effects of Parkinson’s disease but no one more than Gilbert, who had lived with it for nearly 15 years and who, as a neurotoxicologist, deeply understood the disease’s destruction. He had founded and directed the Institute of Neurotoxicology and Neurological Disorders.
Sitting in clinic, Gilbert appeared no different than he had before brain surgery. His arms rhythmically fluttered from an involuntary tremor. His right leg twitched.
More than a month had passed since UW Medicine neurosurgeon Andrew Ko had surgically placed electrodes in a vital region of Gilbert’s brain, woven wires down through his neck, and clipped the leads to a battery pack implanted under the skin on his chest.
Now the neurophysiologist was about to turn on the system.
What Parkinson’s involves
About 60,000 Americans are diagnosed with Parkinson's disease each year. What causes the disease is unclear. Researchers have investigated exposures to pesticides, manganese, and other potential environmental triggers. Less common are cases that can be linked to genetic mutations.
In the disease, the dopamine-producing cells die off in a region of the brain called the substantia nigra. Symptoms—twitching of limbs, slowness of movement, stiffness, impaired balance—grow worse with time. Eventually the disease leads to speech problems and sometimes dementia. A dual drug regimen of carbidopa and levodopa is typically prescribed; they supply dopamine to the brain and other parts of the body, but come with side effects, too.
Gilbert, a University of Washington associate professor of environmental and occupational health sciences, opted against medication. Instead, he said, his “drug of choice” was exercise, particularly cycling.
‘Leave no neurotoxicologist behind!’
His wife, Janice Camp, described him as a one-time elite cyclist. He biked RAMROD, a 149-mile loop of Mount Rainier with 10,000 feet of ascent. He regularly cycled 30 or 40 miles with a peloton in and around Seattle.
Gilbert was 50 when he noticed a slight tremor in his right foot. Five or six years went by with little change. Then the involuntary twitch grew more noticeable. A tremor developed in his hand, and then his arm. His right leg weakened such that he couldn’t keep pace with the other cyclists climbing hills, but the group came up with an encouraging shout, “Leave no neurotoxicologist behind!” and one of them would double back and ride with Gilbert until they caught up.
Three years ago he switched to biking tandem with another rider, and then a year ago, even that became impossible. Walking uphill and rising from a chair were struggles. He couldn’t maneuver through tight or crowded spaces like a mall or airport; independent travel, essential to his career as a lecturer and consultant, stopped.
A candidate for brain stimulation , Gilbert met with Ko, a UW assistant professor of neurological surgery, who performs deep brain stimulation (DBS) on patients with advanced Parkinson’s. DBS interrupts abnormal neuronal activity in the brain.
DBS doesn’t help patients’ problems with balance, sleeping or speech, nor does it slow the progression of the neurodegenerative disease. Only about 10 to 20 percent of people with Parkinson’s are eligible for the procedure.
During the first surgery on June 4, 2015, Ko used MRI and CT images to guide two electrodes into Gilbert’s brain, beside the subthalamic nucleus. It’s an area a few millimeters wide and adjacent to structures critical to movement.
A month later, Gilbert was surrounded by eight people in a clinic room when the neurophysiologist, Vicente Martinez, fired up the system. Ali Samii, Gilbert's neurologist of 10 years, looked on. With the first electrode, nothing happened.
With the second electrode, Gilbert’s tremors stopped, and soon after that he stood with little effort and walked out of the room and down the hall.
“It was pretty surreal to me, beyond belief,” Janice Camp said.
Now Gilbert walks six to seven miles a day. He picks up his granddaughters at the end of the day, one from elementary school and the other from daycare.
He rides tandem with a friend, using a customized bicycle trainer. He recently accepted a prestigious communication award at from the Society of Toxicology at an awards ceremony in New Orleans and visited his family in upstate New York.
“Deep brain stimulation changed my life,” Gilbert said.
His left leg still has a slight tremor, as does his right arm when he lifts it. It’s a tradeoff he made in programming the brain stimulator so his speech is clearer. Only certain words carry a slight lisp.
Gilbert speaks publicly about his experience with Parkinson’s, the need to identify root causes and prevent the disease, and about DBS. He and Ko were interviewed March 19, 2016, on KEXP radio’s “Mind Over Matters” show.
Gilbert wants to use his experience and science background to help guide others with the same frustrating and often isolating disease.
“My nature is to talk about things,” he said. “I just come along with a tremor. It’s a feature.”