PDBuzz
Spring/Summer 2012
Newsletter for the Maryland Parkinson’s Disease and Movement Disorders Center
Researchers Examine Potential Benefit of Exercise, Memory Training Researchers from the University of Maryland School of Medicine and the Baltimore Veterans Affairs (VA) Medical Center have launched a study of exercise and computerized memory training to see if these activities may help people with Parkinson’s disease prevent memory changes. The type of memory that will be examined is known as “executive function”; it allows people to take in information and use it in a new way. Many Parkinson’s patients develop problems with executive function, which can prevent them from working and may eventually require a caregiver to take over more of the complex cognitive tasks of daily living. “Studies of normal aging show that memory and executive function can be improved with exercise, such as walking several days a week,” explains Karen Anderson, MD, principal investigator and a neuro-psychiatrist at the Maryland Parkinson’s Disease and Movement Disorders Center at the University of Maryland Medical Center. Anderson is also an associate professor of neurology and psychiatry at the University of Maryland School of Medicine and a clinician in mental health at the Baltimore VA Medical Center. The researchers, who received funding through a VA Merit Award, plan to enroll about 90 patients who will be divided randomly into three groups: exercisers walking on a treadmill, memory game players, and those doing both exercise and memory games. Participants in each group will receive a memory assessment at the beginning of the study. They will come in three times a
week for their training for three months and then will be tested again. Three months after that, the researchers will test the participants again to see if there may be longer-term benefits to the training. With both the treadmill walking and the memory game, the exercise or video game will become more challenging as the participant improves. The memory training works like a video game with players advancing to higher levels of difficulty. For the exercisers, trainers may increase the speed or slope of the treadmill to make it more aerobically challenging. The treadmill training will take place at the Baltimore VA Medical Center in the Maryland Exercise and Robotics Center of Excellence, a gym facility with specialized equipment for people with physical limitations or balance issues. For safety, participants will wear a safety harness while walking on the treadmill. Experienced exercise physiologists will supervise each training session. The computerized memory training game will take place both at the VA and at the School of Medicine. The game looks like an underwater treasure hunt where players search for jewels and other rewards. Anderson says: “If either of these interventions proves
Inside This Issue In My Own Words ................................................ 2 When to See a PD Specialist .......................... 3 Upcoming Events ................................................. 4 List of Support Groups ...................................... 4
to be effective, eventually we would like to know what kind of maintenance someone would need to do to preserve these memory improvements. How often should you practice the computer memory game to retain the potential cognitive benefits? How many times a week would you need to exercise?” Parkinson’s disease patients interested in enrolling in the exercise and memory study should call 443-827-0677. Please call 410-328-7809 and press 4 for general research inquiries.
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letter from the editor Dear patients, care partners, and friends, Welcome to the first edition of PDBuzz. This newsletter is meant to provide the community with information, resources, and news related to Parkinson’s disease, Parkinsonism, and related movement disorders. We hope you enjoy the articles and we encourage you to share them with friends and family members. In the coming months, we hope to provide you with information on relevant topics and upcoming events. We are interested in your ideas and feedback. Please contact us anytime at ishevrin@som.umaryland.edu or 410-328-9016. For more information, visit www.umm.edu/parkinsons. Ilene Shevrin, MPH APDA Information and Referral Coordinator Maryland Parkinson’s Disease and Movement Disorders Center
In My Own Words By Carl Schuetz I was diagnosed with Parkinson’s disease (PD) in March 2011. I had been sick and seeking a diagnosis for some four years, and maybe it was PD all along—I think so, but who knows? After being ill for so long, I was relieved when I was informed of the diagnosis. Relieved? Am I crazy? No, I felt relieved since I now had something to fight against; my symptoms now had a name, and I began to work at this. Doctors and others recommended meditation or exercise, or a combination of them, along with prescription drugs. I taught myself to meditate, started taking yoga classes, and undertook a strength-training regimen on a
circuit of machines at the local gym. I worked hard, and pushed myself when I felt lazy or reluctant to go to yoga class. I worked at it almost obsessively. But, I discovered that yoga practice provides a combination of mind and body elements, and increased the number of yoga classes I attend. To this end, I recently became certified to teach yoga, and I’m now developing class routines and schedules for yoga classes that are tailored to people with Parkinson’s (PWPs). To help manage my own PD, I still attend yoga classes four to five days a week, and practice yoga at home on the other days. I have made improvements in mind-body connections, and yoga is now a part of my life. But yoga practice is not all results-oriented; it’s also about the quality of time one spends in yoga. During yoga practice—for that one hour each day—I feel as if I don’t have Parkinson’s at all. How about you? Are you ready to try yoga? When your mind and your body are one, you are focused, enjoying the present, fully “here and now.” In my humble opinion, all motivated PWPs should try yoga. Please contact Ilene Shevrin at 410-328-9016 for more information on classes in the area.
Movement Disorders Physicians William J. Weiner, MD Professor and Chairman Department of Neurology University of Maryland School of Medicine Director, Maryland Parkinson’s Disease and Movement Disorders Center University of Maryland Medical Center Stephen G. Reich, MD Professor of Neurology Prince Distinguished Fellowship The Frederick Henry Prince Distinguished Professor in Neurology Co-Director, Maryland Parkinson’s Disease and Movement Disorders Center Lisa M. Shulman, MD Professor of Neurology Eugenia Brin Professor of Parkinson’s Disease and Movement Disorders Rosalyn Newman Distinguished Scholar In Parkinson’s Disease University of Maryland School of Medicine Co-Director, Maryland Parkinson’s Disease and Movement Disorders Center University of Maryland Medical Center Paul S. Fishman, MD, PhD Professor and Research Director of Neurology University of Maryland School of Medicine Chief, Neurology Service Baltimore Veterans Affairs Medical Center Karen E. Anderson, MD Associate Professor of Psychiatry and Neurology University of Maryland School of Medicine Baltimore Veterans Affairs Medical Center Melissa J. Armstrong, MD Assistant Professor of Neurology University of Maryland School of Medicine
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When to See a PD Specialist By Lisa M. Shulman, MD The conventional wisdom is that care from a specialist should be reserved for special situations, and that routine care for Parkinson’s disease (PD) should be provided mainly by general neurologists and primary care physicians. Also, conventional wisdom says that care from specialists is more costly than care from non-specialists. In my experience as a PD specialist, neither of these statements is accurate. I believe that input from specialists in Parkinson’s disease will make a positive difference in all stages of the disease, from the onset of symptoms to the advanced stages of the disease. Furthermore, specialty care in neurology is rarely more costly than primary care, and often is more economical. Here is why: Starting with the onset of symptoms,
a movement disorders specialist can provide the earliest and most accurate information about the diagnosis of PD. In fact, studies that compare the diagnosis of PD to the gold standard of postmortem diagnosis (direct evaluation of the brain on autopsy) show that diagnostic accuracy for Parkinson’s disease is greatest among movement disorder specialists and much lower for primary care physicians with general neurologists found between these two extremes. Confusion about the diagnosis often results in unnecessary tests, poor choice of medications, and unnecessary consultations with multiple physicians—all delaying proper
Thinking About Participating in Research? By Chelsea Morrow and Jessica Rowe, MA Why is research important? Research contributes to the development of new medicines, new procedures, and new ways of identifying and treating medical conditions. These scientific discoveries change and improve our understanding of a disease or condition. The treatments that are available now were made possible thanks to volunteers who participated in clinical research trials years ago. What is a clinical trial? Scientists conduct a variety of research studies to learn more about a problem or to answer questions. In general, clinical trials are medical/health-related research studies using human beings or specimens from human beings (such as tissue, blood, saliva) to learn about a disease or condition. There are various types of clinical trials such as treatment trials, prevention trials, or diagnostic trials. This type of trial involves a researcher collecting data to evaluate the safety or effectiveness of an intervention. An intervention may include a behavior change, drug, device, new form of teaching, or some other form of intervention. Not all clinical trials are interventional and
include a drug or device. Some research is designed to observe behavior or outcomes. This is often called observational research. Observational research is important as it helps researchers to improve patients’ quality of life, functioning, and evaluate outcomes. Participation in research trials or other clinical research is voluntary and patients need not participate even if asked. When participating in research, patients may experience potential benefits, such as learning more about their conditions, treatment, and management, improving symptoms, and gaining physical and emotional support. However, all research may have potential risks. Participation in research involves a careful consideration and discussion with your physician about all benefits and risks before a decision is made. More information on clinical trials can be found at www.clinicaltrials.gov. Reference: Get the Facts, Parkinson’s Disease Foundation www.pdf.org/en/research_advocate_facts Chelsea Morrow is a clinical research assistant at the University of Maryland Neurology Ambulatory Center. Jessica Rowe is a clinical research specialist with the University of Maryland School of Medicine Department of Neurology, working in the Parkinson’s Disease and Movement Disorders Center.
management of symptoms and substantially adding to health care costs. Greater experience with the management of PD results in better choices of treatment at all stages of the disease. Anti-parkinsonian medications are not easy to administer, and the best results (fewer symptoms and side effects) will be achieved by the most experienced physicians. Most importantly, greater relief of symptoms goes hand-in-hand with delaying disability. It may not be feasible for you to see the Parkinson’s disease specialist routinely, but an annual visit will give you confidence that you are receiving the optimum quality of care.
Optimism … It’s Contagious! All across the country, people are teaming up to reach a common goal: to “ease the burden and find a cure” for Parkinson’s disease. Participating in the American Parkinson Disease Association’s national “Optimism” campaign allows you to spread hope, confidence, and a positive vision for the future—while increasing awareness about Parkinson’s disease and raising money for education, support services, and to help find a cure. Optimism events bring people together, empowering them to take action and inspiring them to make a positive impact. Organize an Optimism event today … it’s easy. Call 800-223-2732.
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Stay Tuned! Upcoming Events « Hike the Park Sept. 8, 2012 8 a.m. to noon Oregon Ridge Park, Hunt Valley, Md.
where patients and guests are encouraged to ask questions. Sessions are held each month. Please call 1-800-492-5538 for the date of the next seminar.
People of all ages and lifestyles are invited to help conquer PD as hikers, loop walkers, volunteers, or hike supporters. The hike is approximately 3 miles on the James Campbell trail in Oregon Ridge Park. There will be post-hike activities and you are invited to bring a picnic lunch. All monies raised go to critical research being conducted at the Maryland Parkinson’s Disease and Movement Disorders Center.
Frenkil Building, 16 S. Eutaw St., 3rd floor Baltimore, Md. 1:30 to 3 p.m.
For more information, please visit www.promisesforparkinsons.org. « Within Our Reach: Achieving Goals with Parkinson’s Disease Oct. 16, 2012 8:30 a.m. to 3 p.m. Westin BWI, Linthicum Heights, Md. Please register for our annual PD symposium to learn about PD treatments and research. This year we are planning a completely new type of interactive symposium incorporating panel discussions, movement therapy, and workshops.
Optimism Walks Dogs! 2012 APDA Dog Walk Join the Severna Park APDA Chapter in raising money for PD research by participating in an annual dog walk in the fall of 2012! Exact location and Date TBD. Please contact Ilene Shevrin at ishevrin@som. umaryland.edu if you are interested. Interested in yoga for PD? The Maryland Parkinson’s Disease and Movement Disorders Center and the Parkinson’s Foundation of the National Capitol Area are joining up to offer FREE yoga for PD classes in the Baltimore area for PD patients and care partners. Yoga can be done in chairs and wheelchairs if needed. Date and location TBD. Please contact Ilene Shevrin at ishevrin@som.umaryland. edu or Banu Luu at banu@parkinsonfoundatoin.org if you are interested.
For more information, please contact Ilene Shevrin at ishevrin@som.umaryland.edu. Deep Brain Stimulation Educational Seminars Learn about this treatment option in a small and comfortable group setting
April is Parkinson’s Awareness Month
Anne Arundel County Group 4th Tuesday monthly at noon Elks Lodge in Severna Park 160 Truck House Road, Severna Park, MD 21146 Contact: Brenda Mislan, 410-729-3461 Bowie PD Support Group 4th Monday monthly at 10 a.m. 14900 Health Center Drive, Bowie, MD 20716 Contact: Carter Rardon, 301-412-0835 Frederick Group 3rd Wednesday monthly at 1 p.m. Mt. Pleasant Ruritan Club 8101 Crum Road, Walkersville, MD 21793 Contact: John Kraft, 301-845-6514 Howard County Group 4th Tuesday monthly at 1:30 p.m. Vantage House 5400 Vantage Point Road, Columbia, MD 21044 Contact: David Johnson, 410-992-1120 Howard County Care Partner Group 2nd Tuesday monthly at 10 a.m. Vantage House 5400 Vantage Point Road, Columbia, MD 21044 Contact: Lynada Johnson, 410-992-1120 Leisure World Silver Spring Group 2nd Tuesday monthly at 3 p.m. Leisure World Clubhouse 2 3300 N. Leisure World Blvd., Silver Spring, MD 20906 Contact: Manny Horowitz, 301-598-9704 For more support groups in the MD/DC/VA area, please visit: http://www.parkinsonfoundation.org/education/support-group-network/index.html
World Parkinson’s Disease Awareness Day is April 11. This day commemorates the birthday of Dr. James Parkinson, the English doctor who first described the condition in 1817. The tulip is the symbol of hope for Parkinson’s.
Parkinson’s Disease Buzz Published two times a year by: American Parkinson Disease Association Information and Referral Center University of Maryland School of Medicine 110 S. Paca St., third floor, Baltimore, MD 21201 Phone: 410-328-9016 | Fax: 410-328-0167
List of Select Support Groups in Maryland/DC
Coordinator and Editor
Ilene Shevrin, MPH
Medical Director
William Weiner, MD
The material in this newsletter is presented solely for the information of the reader. It is not intended for treatment purposes, but rather for discussion with the patient’s physician. Produced by the University of Maryland Office of Communications and Public Affairs, 2012