The faces of Parkinson’s disease are many — Pope John Paul II, Adolf Hitler, Muhammad Ali and the notable and beloved Michael J. Fox. It doesn’t discriminate, and its manifestations are myriad.
Parkinson’s disease (PD) affects roughly 1.5 million Americans, which is more than the combined number of people diagnosed with multiple sclerosis, muscular dystrophy and ALS. About 60,000 Americans are diagnosed annually. This number, of course, does not capture the cases that remain undiagnosed. PD is a progressive neurological disorder that affects not only a patient’s movements, but various other facets of functioning. It is not curable, but it is very treatable and manageable with rehabilitative exercise, medication, surgical interventions and with more therapies on the horizon.
Levodopa revolutionized the Parkinson’s scene when it was introduced in the 1960s. Captured in movies like Awakenings, hope emerged as good treatment appeared for a condition that would otherwise slowly plod along toward degeneration and disability. Since that time, over 50 years ago, levodopa remains the gold standard therapy, but new treatments are coming out with more in the pipeline. These new treatments harness new delivery techniques and technologies. Imagine going from taking a pill every day three times a day to getting a tiny subcutaneous injection once a week. It’s revolutionizing not being tied down to pills, schedules and timers.
More research is needed to help bring new therapies to fruition and increase hope to millions of sufferers. We have much to learn regarding the pathogenesis of this disorder and, subsequently, how to either stop or slow its progression. The Parkinson’s field has long been dominated by the dopamine-centric hypothesis, and one of the big unmet needs in this disorder is a way to treat both the nonmotor symptoms and the symptoms of PD that do not respond to current medications, such as freezing of gait and balance. Nonmotor symptoms of PD include depression, anxiety, anosmia, constipation, REM sleep disorders, insomnia and blood pressure drops. Though many new drugs (such as Northera for orthostatic hypotension) continue to be developed, many needs remain unmet.
As required by the FDA, all current PD medications successfully passed through clinical trials, the majority of which our National Parkinson’s Foundation Center of Excellence has participated in.
When Dr. Kapil Sethi started working at MCG in 1985, a movement disorders center did not exist in the state of Georgia. His vision and passion for movement disorders led to the creation of an impressive clinical and research team that came to earn the status of the first National Parkinson’s Foundation Center of Excellence in Georgia or South Carolina, a designation that continues under the leadership of Dr. John Morgan. Obtaining this title was no easy feat. The Augusta University Movement Disorders Center is one of only 41 Centers of Excellence world-wide and, for some time, was the only center to hold this title in the state of Georgia. To achieve this title, a center must provide outstanding interdisciplinary care, research, and outreach and advance a comprehensive approach to the care of this disease. In addition, it must “provide patients access to experimental therapies through participation in clinical trials.”
Patients often have mixed reactions when asked about participation in trials. Some fear being a “guinea pig,” while others jump at the opportunity to have access to the newest therapies and potentially have an edge in the fight against PD. Many of our patients regularly travel two to four hours to our center simply for this advantage.
One such person is “Rose” Vaughn. She asked to go by this pseudonym as she has not revealed her Parkinson’s diagnosis to those around her, even some members of her own family. With minimal medication, at 62 years old, she functions well, working at her third career after two early retirements. She is on minimal medication, but one of them is a medication she is taking as part of a clinical trial. “I feel great,” she says.
Rose lives in Aiken and has participated in numerous clinical trials here at MCG. When asked why she participated in so many studies, she simply answered, “Because I could.” She added, “I have this disease, and it’s very important to be involved as whatever is learned through this research could help someone in the future, if not me.” She was most recently involved in an exciting trial conducted by Drs. Raymond Chong, Chandramohan Wakade and John Morgan looking at the effect of extended release niacin, which is a B vitamin. She excitedly told me that this was one of the more rewarding studies she’s been in as the information from her and other participants provided compelling data that justified more funding money and an extension of the study. “It’s pretty exciting to know that [my participation] made a difference.” She feels a difference, and no matter what the outcome is of further study, she plans to continue the vitamin. “I have always gotten great care [at Augusta University] independent of the trials but, through them, have developed a deep connection to the team over there.”
Connection is definitely an important element in thriving in PD. Rose doesn’t attend PD support groups as her symptoms are manageable and she would rather “focus on other things like golf.” For many, support is important, and here in Augusta, we have the CSRA Parkinson’s Support Group, which meets downtown once a month. A vocal member and vice president of the group is Joe Kelley who has partnered with Dr. Michael Diamond, vice president for research at Augusta University, to bring in more research projects focused on Parkinson’s while simultaneously advocating for patients in the research process. He acts as a liaison between our research group and the PD support group taking part in a Parkinson’s Disease Foundation (PDF) initiative called PD PAIR (Parkinson’s Advocates in Research). In addition, he listens and responds to group’s needs, as he did when assisting in the launch of a monthly support group created just for women to discuss their particular needs in a safe space.
We are fortunate to have an Interdisciplinary Care (IDC) Team here at Augusta University with fantastic facilities at Wheeler Road where our physical, occupational and speech therapists are all trained in LSVT; i.e., the Lee Silverman methodologies aimed specifically at the needs of those with Parkinson’s. Too often patients go through physical therapy finding that it doesn’t help them. It’s important to recognize that many, if not most, therapists are trained to deal with disabilities such as poststroke weakness, whereas the needs of the PD population is much different. Our therapists focus on gait and balance issues, tricks to overcome freezing and avoiding falls, etc. At our IDC clinics, patients are seen by Dr. Julie Kurek, one of the neurologists on the movement team, as well as a social worker, a physical therapist, an occupational therapist, and a speech and swallow therapist, all in one spot at one visit.
As we are an academic center, our therapists such as occupational therapist Stephanie Johnson run studies on how to improve function in PD. Currently, she is examining the effects of Rock Steady Boxing, a therapy whereby PwPs (persons with Parkinson’s) punch, saunter and move their way in a boxing-like style. Many have enrolled, and all those who have finished have elected to continue of their own accord at a center in Evans, Georgia.
Indeed, we are lucky to have an accomplished outreach coordinator, Kathy Tuckey, who bridges the gap between our service and the community, and an experienced and caring social worker, Lilian Branch, who helps our patients successfully navigate through various insurance barriers to ensure patients receive the best possible care. As implied earlier, we also have a dedicated team of research professionals including Buff Farrow, our research project manager, and research coordinators Paula Jackson and Dedi McLane. We have a physician assistant, three physicians, nurses and a fellow in training who also serves as part of the team.
As we are an academic center, our therapists such as Stephanie Johnson, occupational therapist, run studies on how to improve function in PD. Currently, she is examining the effects of Rock Steady Boxing, a therapy whereby PwPs punch, saunter and move their way in a boxing-like style. Many have enrolled, and all those who have finished have elected to continue of their own accord at a center in Evans, Georgia.
Indeed, we are lucky to have an accomplished outreach coordinator, Kathy Tuckey, and an experienced and caring social worker, Lilian Branch. We also have a dedicated team of research professionals including Buff Farrow, our research project manager, and research coordinators Paula Jackson and Dedi McLane. We have a physician assistant, three physicians, nurses and a fellow in training who also serves as part of the team.
As mentioned earlier, we employ newer medications such as Duopa, which is levodopa-carbidopa (the “gold standard”), delivered continuously in gel form into the patient’s stomach by a pump worn outside the body, thus avoiding multiple daily dosing. We are also studying apomorphine as a subcutaneous infusion for constant delivery and, hopefully, smoother symptoms management.
Another remarkable treatment is deep brain stimulation (DBS), a surgical therapy that has been approved for Parkinson’s disease since 2002 through Medtronic. DBS is a technology that has been used safely since 1998 (over 20 years) and, for the right patient, can be revolutionary. In fact, at the end of September this year, St. Jude got a new DBS device approved that is not only wireless for patient comfort, but allows for current steering and conceivably better targeting of symptoms with fewer side effects. We work closely with neurosurgeon Dr. Cole Giller and his physician assistant Patrick Jenkins to identify good candidates. Once a candidate has been identified, we select the appropriate brain target for maximal benefit (please read inset about one such patient).
We have monthly DBS meetings to discuss candidates, follow up on the progress of past patients, and address any social, cognitive or psychiatric needs the candidates may have either before or after the surgery, thus taking a comprehensive approach.
On the horizon, is a new therapy called Exablate Neuro, which is the first focused ultrasound device approved by the FDA to treat patients with tremor. It is a noninvasive, image-guided thalamotomy, created through an intact skull that doesn’t require any ionizing radiation, incisions or implants. This could conceivably be an option for those who don’t qualify as surgical candidates or are simply too scared to undergo DBS. Though it has more limitations, it is one more option in our armamentarium of weapons to fight the symptoms of PD.
MEMORY & MOVEMENT
Dr. Morgan spans both movement and memory disorders, and it is no surprise that at times the two overlap. Our clinical trials extend not only to Parkinson’s, but psychosis, memory disturbances and so forth. In May of this year, the first medication to address PD psychosis, Nuplazid, hit the market. Prior drugs were troublesome as they blocked dopamine, the very chemical missing in Parkinson’s; this new drug, however, targets a different neurotransmitter. This is important as it prevents any worsening of physical symptoms that emerge secondary to a lack of dopamine.
The nice thing about working at a Center of Excellence is that we have at our disposal virtually all current therapies and those that are still in trials. Nearly any medication that exists or is in trials can be obtained here. In addition to the medication, we also offer services such as botulinum toxin injections for abnormal posture and cramping that can often accompany PD and extend this therapy to those suffering from dystonia and spasticity as well.
Many projects and studies are currently in the pipeline here at Augusta University: imaging studies with radioactive tracers, repurposing of medications used for gout and diabetes, new surgical technologies and new targets beyond the usual dopamine cells. Research has shown that the better we manage Parkinson’s today, the better life will be tomorrow. It’s an exciting time in Parkinson’s and an exciting time in PD research here at Augusta University.
To become a patient in our clinic, call us at 706-721-2798.
If you are interested in participating in a clinical trial or would like more information about them, contact Buff Farrow at 706-721-0619 or firstname.lastname@example.org.
If you are interested in having us speak at your civic group or church, please let us know: email@example.com.
If you would like to donate to our NPD Center, please contact Kathy Tuckey at firstname.lastname@example.org.
A 29-year-old female presented with a three-year history of Parkinson’s disease beginning with a right-sided tremor, bradykinesia of her right leg and small handwriting. She later developed significant motor fluctuations requiring medication every one to two hours and severe bradykinesia interfering with activities of daily living. She improved with levodopa, but even small doses produced severe dyskinesias affecting her entire body, limiting the dose of medication that could be tolerated. Most of her day was spent with severe dyskinesias or profound rigidity and bradykinesia.
She underwent bilateral placement of globus pallidus internus (GPi) deep brain stimulators (DBS). Pallidal targets were chosen because stimulation of the subthalamic nucleus is known to aggravate preexisting dyskinesias.
When the DBS was activated, her bradykinesia and rigidity improved by 90 percent. Her gait improved with normal turns and arm swings. There was no tremor, and her bradykinesia and dyskinesias resolved.