Life in Motion
The Movement Disorders Clinic, the most comprehensive in the Midwest, is helping restore independence and quality of life to many patients who thought they had to live with the debilitating effects of excessive or involuntary movement disorders.
Initially, the tremor in Lynn Naber’s right hand was so slight, he didn’t think much of it. “Just a part of getting older,” he thought. But within 30 days, the tremors had become so severe that Naber had to give up driving nearly all together and he could barely feed himself.
“I was shaking so badly, I couldn’t hold onto anything,” recalls Naber, whose home construction business also suffered. He tried to work with his left hand, but he had to rely on his partner to take up most of the slack. Eventually, he had to quit home remodeling entirely.
After a visit to his neurologist in Lincoln, Naber was referred to the Movement Disorders Clinic at The Nebraska Medical Center. The clinic is one of the most comprehensive, multidisciplinary programs in the region that combines specialists in neurology, neurosurgery, neuropsychology and physical, occupational and speech therapy. The clinic draws referrals from across Nebraska and outside the state.
“We work together to help our patients regain function and to produce the best possible outcome,” says Diego Torres-Russotto, MD, neurologist at The Nebraska Medical Center and director of the Movement Disorders Program. Dr. Torres-Russotto specializes in movement disorders and joined the staff at the University of Nebraska Medical Center (UNMC) in early 2009, bringing more than seven years of specialized training in this field. Dr. Torres-Russotto completed his neurosurgery internship at the Mayo Clinic in Rochester, Minn., an internal medicine internship at Washington University in St. Louis followed by a neurology residency and movement disorder fellowship at Washington University. “What sets our program apart is that it is an integrated team of specialists that includes the only neurologist who is fellowship-trained in movement disorders in the region,” says Kenneth Follett, MD, neurosurgeon at The Nebraska Medical Center who provides a life-altering surgical procedure to qualified movement disorders patients called deep brain stimulation.
“Movement disorders is a true neurological subspecialty because it requires knowledge about hundreds of different disorders and learning of multiple procedural skills that are not usually part of general neurology training,” says Dr. Torres-Russotto. “In general, many patients with movement disorders tend to be misdiagnosed and untreated for a long time, sometimes for years.”
It took Dr. Torres-Russotto less than two short hours to diagnose Naber. After a comprehensive physical exam and a series of neurological testing, Naber was diagnosed with both essential tremor and cervical dystonia.
Essential tremor is the most common of all neurologic diseases with the exception of stroke, affecting as many as one in 20 people over age 40 and one in five people over 65. An estimated 50,000 Nebraskans have the condition.
While it can affect almost any part of the body, essential tremor is associated with trembling that occurs most often in the hands — especially when trying to do simple tasks. It may also cause trembling of the head, voice or arms.
With the right treatment regimen, essential tremor is often curable. “This is one of those conditions that many people tend to have for years without getting treatment because of misdiagnosis or they think it’s just a part of getting older,” says Dr. Torres-Russotto.
Naber also had cervical dystonia, also known as torticollis. In dystonia, muscles contract involuntarily — causing an uncontrollable twisting of the affected body part or muscle spasms. Dystonia was causing Naber’s neck to tilt to one side, causing pain and discomfort.
“It was a very frightening time, wondering what I had and if it could be treated,” recalls Naber. “But Dr. Torres-Russotto put my mind to ease immediately. After he diagnosed me with essential tremor, he said, ‘don’t worry about it, we can treat it.’ Then he looked at my neck and said, ‘we can take care of that too.’”
Dr. Torres-Russotto started Naber on medications and, within two weeks, his tremors were completely gone. Naber also received an injection of botulinum toxin, also known as Botox, for his neck. Botox is used to inhibit the release of neurotransmitters that cause muscle contraction.
“My neck pain is gone, I no longer lean my head to one side and my tremors are gone,” says Naber. “It’s like a miracle thing. I can’t say enough good things about Dr. Torres-Russotto.”
During this period, Naber was forced to change trades and turned in his trowel for a less physically demanding job doing home inspection, radon testing and mitigation work. But since his tremor has disappeared, Naber has been able to resume some of his home remodeling work, focusing primarily on designing and laying tile for upper-scale homes. “This is my first love,” says Naber, who says he has been involved in home construction work to varying degrees since he was a teenager. “I am not a person who is going to sit behind a desk. I’ve always been a hands-on person — a craftsman at heart.”
Essential tremor and dystonia are just two of the many movement disorders treated at the Movement Disorders Clinic. Movement disorders are neurological conditions that affect the speed, fluency, quality and ease of movement. They may involve excessive or involuntary movements or slowed or loss of voluntary movements. Movement disorders occur as a result of damage or disease in a region located deep in the brain called the basal ganglia. The basal ganglia is composed of clusters of nerve cells called neurons that send and receive electrical signals and are responsible for movement control. While the exact cause of damage to this part of the brain is not known, it appears to be linked to age-related changes, environmental toxins, genetic disorders such as Huntington’s disease and Wilson disease, medications, metabolic disorders such as hyperthyroidism, Parkinson’s disease and stroke.
“Movement disorders tend to be very disabling and produce social isolation in many individuals,” says Dr. Torres-Russotto. “Some conditions are curable or highly treatable, which allows patients to make a big change in the quality of their lives. Treatment can completely change their prognosis. Some patients can literally jump out of a wheelchair with proper treatment.”
The Movement Disorders Clinic is divided into four specialty areas: Parkinson’s Clinic, Dystonia and Spasticity Clinic, General Movement Disorders Clinic and the Deep Brain Stimulation Center. Conditions that fall under general movement disorders include essential tremor, Huntington’s disease, tics, Tourette’s syndrome and restless leg syndrome.
Treatment for movement disorders depends on the underlying cause. In most cases, the goal of treatment is to relieve symptoms and may include medications, Botox therapy and surgery. When medication is ineffective, severe movement disorders may require surgery such as deep brain stimulation (DBS), a procedure that involves surgically implanting a device called a neurostimulator in the chest. The neurostimulator is used to deliver electrical stimulation to areas of the brain that control movement. The electrical charge alters nerve signals that trigger abnormal movement.
“We’ve made huge advancements in the treatment of movement disorders in the last 20 years that have truly changed the picture for these patients,” says Dr. Torres-Russotto. “We have multiple, new drugs that have helped tremendously, as well as deep brain stimulation therapy and Botox injections. Our center is working to find a cure for all of these conditions, I think some of these are within our reach within the next 10 years or so.”
“I was afraid these were things I was going to have to live with,” says Naber, who feared he was losing his independence at the young age of 59. “I have complete confidence in Dr. Torres-Russotto and his staff. He immediately took control of the situation and turned my life around in a matter of a few weeks.”
Naber says the day he started his first tile job was a very uplifting day. “It felt fantastic,” he says. “I’m doing what I love again. Most people would call it work, but not me. I didn’t think I’d ever be doing this again.”
A neurologist for more than 30 years, Dr. John Bertoni is director of the Parkinson’s Disease Clinic at The Nebraska Medical Center and is one of the country’s leading experts on Parkinson’s disease and Parkinson’s research. His interest in Parkinson’s disease found its home in Nebraska some 20 years ago. “Nebraska has one of the highest risks for Parkinson’s in the country,” says Dr. Bertoni. “Coming to Omaha presented greater opportunities for studies of this disease.”
Dr. Bertoni received his MD and PhD in neurosciences from the University of Michigan in Ann Arbor. He also attended the University of Michigan in Ann Arbor to complete his residency in neurology and his fellowship in neurochemistry. Prior to joining the University of Nebraska Medical Center (UNMC) faculty in December 2008, Dr. Bertoni spent 19 years at Creighton University Medical Center as chairman of the Department of Neurology.
When Dr. Bertoni joined Daniel Murman, MD, a geriatric neurologist at The Nebraska Medical Center, Dr. Murman was seeing the majority of the medical center’s Parkinson’s and movement disorder patients. “The addition of Dr. Bertoni and Dr. Diego Torres-Rossutto has increased our capacity to evaluate and treat more patients with movement disorders, and these numbers are expected to grow as our population ages,” says Dr. Murman. Dr. Murman specializes in treating patients with age-related neurodegenerative diseases of which Alzheimer’s and Parkinson’s are the most common.
It was very early in his career that Dr. Bertoni began cultivating his passion for research on the brain and Parkinson’s disease. In 1981, he received the Teacher Investigator Development award, providing him a five-year grant from the National Institutes of Health to fuel his interest in teaching and research.
Over the last 20 years, Dr. Bertoni has conducted more than 60 studies involving the brain and/or Parkinson’s disease. And he has been involved in studies of nearly all of the 15 agents now approved for treatment of Parkinson’s. Dr. Bertoni is also a contributor to one of the most complete and respected books on the disease called “Parkinson's Disease.”
When Dr. Bertoni joined the staff at The Nebraska Medical Center, he facilitated the hospital’s membership in the Parkinson’s Study Group, a nonprofit consortium of experts from medical centers in the United States and Canada. These experts are dedicated to improving treatment for persons affected by Parkinson’s disease through education and collaboration in research and clinical trials. “Some of the best and most important studies are sponsored through this group,” says Dr. Bertoni.
But still the search for a cure continues. “Advances in medicine typically come over many years,” says Dr. Bertoni. “And while we don’t have a cure for Parkinson’s, we have made significant progress in better defining the disease, diagnosing it, as well as treating it and, hopefully, slowing the progression of the illness.”
It is estimated that as much as 3 percent of the population will develop Parkinson’s disease during their lifetime, and the risk is even higher in Nebraska.
“Many people will have Parkinson’s for many years before it becomes apparent,” says Dr. Bertoni. Some of the more subtle early symptoms of Parkinson’s include: loss of sense of smell, thrashing in sleep, depression, loss of facial expression, excessive sleepiness during the day, constipation, shortening of one’s steps and a diminishing arm swing when walking. As the disease progresses, more advanced symptoms include physical slowness, rigidity, tremors and difficulty with balance and gait. Up to one-third of patients may develop dementia, usually in the later stages of the disease. One of the subtypes of Parkinson’s called Diffuse Lewy Body disease is associated with dementia from the onset.
While a definitive cause for Parkinson’s has not been found, a combination of factors may play a role, notes Dr. Bertoni. These include aging, having an inherited gene and exposure to environmental triggers such as pesticides and herbicides, which may explain Nebraska’s higher prevalence of the disease. It also appears that the risk is higher for males, individuals with personalities that take less risk and those with higher education levels. “In general, it is the law-abiding citizen who is well-educated that is more likely to get Parkinson’s rather than the renegade,” says Dr. Bertoni.
“Parkinson’s is a complex disease and there are probably actually many different forms of the disease because it affects people in so many different ways,” says Dr. Bertoni. A deficiency of the chemical messenger called dopamine has been identified as a primary precipitator of Parkinson’s disease. In Parkinson’s patients, the specific brain cells that produce dopamine become impaired and die. What sets this chain of events in motion is still uncertain, but it appears to be related to genetic mutations or environmental toxins or both.
Recent research has shed significant light on the role of gene mutations in raising one’s risk for Parkinson’s. There are more than 12 genes that have been identified to play a role in Parkinson’s disease, which can increase one's risk 25 to 50 percent depending on which genes are carried, says Dr. Bertoni.
Research also has contributed to many advancements in treatment over the years and continues to focus on better management of the symptoms. “We have studies going on numerous fronts,” says Dr. Bertoni. “Some of the best minds in the world are working on theories as to what triggers Parkinson’s and how to stop the degeneration of brain cells that causes the disease. Our ultimate goal is to prevent people from ever getting the disease. Someday I expect that we will find a cure for Parkinson’s, and hopefully soon.”
In the meantime, today’s Parkinson’s patients are getting significant relief from medications which are providing patients greater quality of life from five to 30 years or more. Today, there are more than 15 types of medications that fall into three primary groups. The first group of medications, levodopa, remains a gold standard for treating Parkinson’s disease. These drugs provide the raw material to increase the production of dopamine. The second type, dopamine agonists, is designed to act like dopamine. The third group, inhibitor therapy, can preserve the levodopa and may possibly slow disease progression. Most patients will eventually use a combination of all three medications to achieve maximum results, says Dr. Bertoni. Initially, the medications can make a significant difference for most patients for up to 10 years. But eventually, they too begin to lose their effectiveness. Patients will also begin to experience undesirable side effects such as uncontrollable, restless movements if continued or overused.
If medical therapy, in the hands of a movement disorder specialist, is unable to provide a good quality of life and the patient is an appropriate candidate, surgical placement of a deep brain stimulator may provide considerable benefits.
Other therapies and forms of self-help are also recommended to manage the effects of Parkinson’s, including occupational therapy, speech therapy, nutrition counseling, yoga, support groups and regular exercise to help maintain balance, flexibility and physical health.
“Individuals who take an active role in their own care, who exercise regularly, stay engaged and participate in support groups, do the best in managing the disease and living a relatively healthy, active and quality life,” says Dr. Bertoni.
“Our goal is to minimize symptoms and improve quality of life for these patients for as long as possible,” says Dr. Bertoni. “We are continually learning more about the disease and there are many new treatments coming down the pipeline. There is a lot of hope for a brighter future in finding a cure for this disease.“
When Joseph Solsky looks at a glass, it’s always half full.
Ironically, it wasn’t long ago that Solsky could keep barely a drop of water in his glass if his life depended on it.
But even then, Solsky always found a way to see that glass half full.
“I always look at the positive,” says Solsky. “Whenever I delve into something, I do the best I can do. I give it my 100 percent.”
Diagnosed with Parkinson's disease, Solsky applied that same optimism and drive to his battle with Parkinson's and dug in his heels. "I decided early on that I was not going down without a fight,” he says.
Like many Parkinson’s patients, at the beginning, Solsky’s symptoms were vague and started with just a slight tremor in one hand. His neurologist suspected Parkinson’s and sent him to the Mayo Clinic where a diagnosis of Parkinson’s disease was confirmed.
“My first reaction was that of complete shock,” recalls Solsky. “Me? Parkinson’s? How?” But when the reality of the diagnosis finally set in, Solsky went to work.
He began to do his homework and attacked the problem with the same thoroughness he approaches everything he does. He researched medical journals and found out that Parkinson’s manifests itself differently in each individual and requires a very individualized treatment plan.
Solsky then began to search for a Parkinson’s specialist, and it had to be one of the best in the country. He found that expert right here in Omaha — John Bertoni, MD, PhD, a neurologist at The Nebraska Medical Center who has dedicated the last 25 plus years of his practice to treating Parkinson’s patients and finding a cure. Dr. Bertoni is director of the Parkinson’s Clinic at The Nebraska Medical Center and works with a team of neurologists who each contribute their unique expertise to elevate the care and management of movement disorders like Parkinson’s.
“I wanted a physician who I could talk to and ask questions freely,” says Solsky. “Dr. Bertoni did all of that. There were times when Dr. Bertoni and I discussed my disease for more than an hour.”
Dr. Bertoni started Solsky on medications that have been extremely effective at halting the symptoms of Parkinson’s for up to 10 years or more.
“At first, they were extremely effective,” says Solsky. “My tremor would disappear entirely. But then gradually the effectiveness wore off. I’d be at work and by the end of the day I couldn’t even walk out the building by myself.”
He continued to work full time, eventually transitioning to working several days at home. He couldn’t quit, he says; a lot of people were depending on him. Solsky is a chemist who works for the U.S. Army Corps of Engineers but is currently leading a project with the U.S. Environmental Protection Agency. This project involves working on the Superfund program to develop a common electronic reporting system that can be used nationally and worldwide to report and monitor environmental data associated with hazardous waste sites and national or manmade disasters. “My goal is to see the project through to the end,” he says. So Solsky learned to work around his handicaps.
The tremors became so bad in his right hand, that it essentially became useless, he says, so he learned to type with his left hand. He did most of his typing earlier in the day when the medications were most effective and saved his phone calls for the afternoon. He began to hold more of his meetings via phone conferences and when he had to give talks, he kept his trembling hands in his pockets and focused on speaking slowly and deliberately.
He heard that exercise has been shown to help Parkinson’s patients maintain their mobility, so he joined a gym with an exercise program designed specifically for Parkinson’s and multiple sclerosis patients. Despite Solsky’s efforts, his symptoms progressed so quickly that within a year and a half after beginning treatment, he had reached the maximum medication dosage.
The only option left for Solsky was a surgical procedure called deep brain stimulation (DBS), normally reserved for advanced stage patients who have suffered Parkinson’s for five years or more. The procedure is performed by neurosurgeon, Kenneth Follett, MD, PhD, a professor and chief of Neurosurgery at the University of Nebraska Medical Center (UNMC) and a world-known expert in the procedure. DBS has been shown to provide significant improvement in quality of life to severe Parkinson’s patients who no longer get relief from medical therapy.
Deep brain stimulation uses mild electric pulses to stimulate the brain and block the signals that cause Parkinson’s symptoms or tremor. It involves implanting an insulated wire lead in one of several areas of the brain. The lead is connected to a small pulse generator, which can be controlled by the patient, implanted beneath the skin in the chest area.
Despite the potential benefits, the decision as to whether to have the procedure performed was not an easy one for Solsky. The thought of having brain surgery while awake was frightening. But the loss of his freedom was even more distressing. “I could feel my ability to live independently slipping away and there was nothing I could do about it,” he says.
After several weeks of discussions, research and weighing the pros and cons, Solsky decided to proceed. The way Solsky saw it, he had no choice.
On Aug. 21, 2008, Solsky had the first stage of the surgery, which involved implanting the wires into his brain. Before Solsky left the operating room, Dr. Follett tested the DBS. “For the first time in a long time, my body wasn’t twitching and trembling,” recalls Solsky. “In a few seconds, I went from trembling and jerking uncontrollably to being perfectly calm. I felt like I was literally floating. I was in heaven.”
One week later, Solsky returned to the operating room to have the generator implanted into his chest. Then he had to wait an additional six weeks to allow his body and brain to heal from surgery.
Solsky calls Oct. 2, 2008, his rebirth date. That’s the day DBS was turned on. Solsky says it has been life-changing. “My life has been given back to me,” he says. “I could not have imagined the benefits from this procedure. It far exceeded my expectations.
I came to Dr. Bertoni’s office with a cane and barely able to walk. I walked out without the cane and no assistance.”
About six months later, Solsky and his wife, Sherry, bought the house they had dreamed about for years, but they had delayed as a result of Solsky’s condition and uncertain future. It is a large ranch on the southwest edge of town overlooking a natural preserve. Now when Solsky works at home, he often retreats to his favorite room in the house — a sunroom that provides a scenery lush with trees, a running creek and natural wildlife. “None of this could be possible,” says Solsky, “without the support I received from my wife and family and the doctors at The Nebraska Medical Center.”
Despite the positive results Solsky has enjoyed with DBS, he must still deal with the many other symptoms of advanced Parkinson’s. “Parkinson’s affects every part of your body,” says Solsky. For instance, Solsky has had to undergo speech therapy because his vocal cords began to lose function, making it difficult to swallow and speak. He no longer blinks naturally, making him susceptible to eye infections. His skin is often dry and flaky, his memory is declining and he involuntarily drools. He also suffers serious sleep problems. To help function more normally throughout his day, Solsky says he places sticky notes at home and at work. They remind him to do four things: swallow; speak loudly; speak slowly and clearly; and blink. But those things are small compared to the loss of function he had to deal with before DBS.
Solsky says he used to turn the DBS off every month so he could remember how bad it was. But not anymore. “I don’t want to remember,” he says. “Sometimes I feel so good that I forget I have Parkinson’s.”
The results are life-changing.
Some have even called it miraculous. And it’s providing hope and restoring quality of life to Parkinson’s patients whose symptoms have become severely disabling.
Deep brain stimulation (DBS), a procedure that can be likened to a pacemaker for the brain, is typically reserved for the most severe cases; but for those patients, the results are quite amazing.
That’s no surprise to doctors at The Nebraska Medical Center, one of the earliest adopters of the procedure. Kenneth Follett, MD, PhD, a neurosurgeon at The Nebraska Medical Center, has been performing the procedure for some 10 years with significant results. A professor and chief of Neurosurgery at the University of Nebraska Medical Center (UNMC), Dr. Follett is also a recognized world leader in the field of DBS. He has served on the national advisory panels for both Medicare and private Parkinson’s foundations that develop guidelines for DBS. Today, he devotes much of his practice to performing this life-altering procedure. “It’s not a life-saving surgery, per se, but it can have such a dramatic impact on the quality of life for these patients that I personally believe it merits any potential discomfort and risks of surgery. I never received many thank yous from patients until I began doing this procedure. Now I get letters back from patients and spouses saying ‘it has given them their lives back.’”
The life-changing results obtained by DBS were recently confirmed by evidence obtained from the largest study ever conducted on surgery for Parkinson’s disease, sponsored by the Department of Veterans Affairs (VA) and National Institutes for Health (NIH). That study found that deep brain stimulation can provide significant relief to patients with advanced Parkinson’s compared to traditional medication therapy. According to one of the leaders of the study, “After five to 10 years of medical therapy, medications may start losing their effectiveness and most people begin to suffer from their side effects. Study results show this procedure doubles the amount of functional time these people have each day.”
Dr. Follett began performing the DBS procedure when it was FDA-approved in 1997 for treatment of essential tremors. “The results were so significant that it quickly became apparent that it could replace the standard surgery to treat Parkinson’s that was in use at that time,” says Dr. Follett. DBS was FDA-approved for treatment of Parkinson’s in 2002, but by then, most forward-thinking surgeons like Dr. Follett had already begun performing the procedure for severe cases of Parkinson’s. Today, it is considered the gold standard of surgical treatment for Parkinson’s disease, as well as severe cases of essential tremor and dystonia.
When Dr. Follett came to UNMC in 2005, he joined Arun-Angelo Patil, MD, a UNMC neurosurgeon at The Nebraska Medical Center, in making DBS more widely available to the Parkinson’s population in Nebraska and the Midwest. Combined, the two surgeons perform approximately 30 to 40 DBS procedures a year, making The Nebraska Medical Center the busiest center in the region and the most comprehensive with its team of experts. The team includes fellowship-trained movement disorders specialists, neuropsychologists with special expertise in neurological disorders and neurosurgeons with special expertise in functional neurosurgery. “This combination of experts gives us a level of expertise that is characteristic of the major, high-level DBS programs in the U.S.,” says Dr. Follett.
Deep brain stimulation uses mild electric pulses to stimulate the brain and block the signals that cause Parkinson’s symptoms or tremor. The surgery entails two phases. The first surgery involves implanting an insulated wire lead in one of several areas of the brain. The lead is connected to a small pulse generator, which is implanted beneath the skin in the chest area during the second phase of the surgery. This generator can be controlled by the patient and doctor to adjust the frequency and strength of the electrical impulses to fit each patient’s needs.
“The importance of careful patient selection is the basis for our team approach, which involves movement disorders neurologists, neuropsychologists, neurosurgeons and nurses,” says Dr. Follett. “While only about 5 to 10 percent of Parkinson’s patients will eventually be candidates for the procedure, for those 5 to 10 percent it can make a profound difference in their lives.”
To qualify as a candidate, patients must not suffer from dementia, must have inadequate relief of symptoms with medical therapy due to dose-limiting side effects such as motor fluctuation and dyskinesias, and must get some relief from the drug L-dopa.
“DBS provides 24-hour relief from Parkinson’s symptoms and eliminates the roller coaster syndrome that most patients will experience with medications,” says Dr. Follett.
The procedure has not been performed enough to know how long it will remain effective, says Dr. Follett, but currently, patients are seen getting good results for 10 years or more.
“This surgery is one of the more rewarding surgeries I do,” says Dr. Follett. “It’s not often that you get to be a part of something that can provide such an immediate and profound impact on a patient’s life.”