NIH Funds Definitive Study of Potential Parkinson s Drug

Transcription

1 Parkinson s Update Parkinson s Disease and Movement Disorders Center Feinberg School of Medicine Northwestern University Spring 2014 Vol. 18 NIH Funds Definitive Study of Potential Parkinson s Drug Tanya Simuni, medical director of Northwestern s Parkinson s Disease and Movement Disorders Center, has been awarded a $16 million National Institutes of Health grant to study the efficacy of the drug isradipine as a potential neuroprotective agent in Parkinson s disease. The only Phase III PD neuroprotective study currently funded by NIH, it is being conducted by Northwestern in partnership with the University of Rochester Medical Center. While there are pharmaceutical and alternative therapies to manage PD, the second most common neurodegenerative disease, no cure and no treatments that definitively slow its progression have been found. Isradipine has been identified as a possible solution for delaying disease progression. If effective, it will significantly revolutionize the treatment of PD. Interest in isradipine has recently increased in the Parkinson s community. Isradipine is currently approved by the Food and Drug Administration to treat hypertension. It is a calcium channel blocker a drug that inhibits the excessive flow of calcium and stunts certain adverse cellular functions. Researchers have demonstrated in animal models that imbalances in calcium contribute to brain changes, such as the death of neurons that produce dopamine, a critical chemical messenger that directs a person s ability to move. When the production of dopamine is impaired, as is the case in Parkinson s disease, movement problems develop. It is hypothesized that isradipine will preserve dopamine levels over an extended period of time, thereby slowing the progression of PD. If it proves to be safe and effective, this drug will change the way we treat Parkinson s disease, says Simuni, who is the principal study investigator. Although we now have very effective symptomatic treatments to manage Parkinson s, the development of a disease-modifying intervention remains the holy grail. And isradipine is already widely available and inexpensive, allowing for rapid translation of our research into clinical practice. The study of isradipine is based on the seminal results of preclinical studies in the lab of D. James Surmeier, Nathan Smith Davis professor, chair of the Department of Physiology, and director of the Udall Center of Excellence for Parkinson s Disease Research at Northwestern. With his team of researchers at one of the nation s premier institutions for researching the physiology of movement disorders, Surmeier discovered the benefit of isradipine using animal models of PD. That discovery led Surmeier s team to collaborate with Simuni s, which had first studied the safety of isradipine in patients with early PD, focusing on blood-pressure parameters. A dose of up to 10 milligrams a day of isradipine was found to be safe enough to proceed, but a larger safety study was needed before the definitive safety and efficacy study. That larger safety study Phase II was funded by the Michael J. Fox Foundation and the Northwestern continued on next page Parkinson s Disease and Movement Disorders Center 1

2 Northwestern to Investigate Genetics of Parkinson s Disease Parkinson s Drug Study continued from page 1 By Marla Paul As one of 32 clinical sites of the large-scale biomarker study Parkinson s Progression Markers Initiative, Northwestern Medicine will study people with genetic mutations associated with Parkinson s disease. Sponsored by the Michael J. Fox Foundation for Parkinson s Research, PPMI is studying clinical and imaging data and biological samples of participants with a known mutation of the LRRK or SNCA [alpha-synuclein] gene. Previous research has shown these mutations are associated with PD and account for a greater number of PD cases among certain ethnic groups and families, notably the LRRK2 mutation in people of Ashkenazi (Eastern European) Jewish, Basque, and North African Berber descent. Studying individuals with genetic mutations associated with Parkinson s can accelerate our research toward a biomarker and more effective treatments, says Parkinson s Disease and Movement Disorders Center director Tanya Simuni, the study s principal investigator at Northwestern. Although known genetic mutations currently account for only 5 to 10 percent of all Parkinson s cases, this population can provide invaluable information about the intricacies of the disease for all patients. Researchers will enroll 250 people with the LRRK2 mutation and Parkinson s and 250 people with the mutation but without Parkinson s. To study the rarer SNCA mutation, researchers will recruit, using family connections, 50 people with Parkinson s and the mutation and 50 people with the SNCA mutation but without PD. Participants will be followed for five years. The insight gleaned from these research volunteers will fortify current efforts to develop a disease-modifying therapy, something that currently eludes the field. Those interested may visit /ppmi/genetics, call , or Marla Paul is health sciences editor in Northwestern University Media Relations. Dixon Foundation. It recruited 100 newly diagnosed PD patients with whom it tested the target dose of 10 milligrams. The Phase II study provided data needed to apply for funding of the definitive study. Phase III will recruit at least 300 participants with newly diagnosed PD. It will be carried out over five years at 56 Parkinson Study Group centers in North America. If you are interested in learning more or participating, contact the research team at or 2 Parkinson s Update newsletter Spring 2014 Vol. 18

3 Community Resources Creative Arts and Movement Therapy Second, third, and fourth Tuesdays, 1 3 p.m. Art therapy (1 p.m.) uses the creative process to enhance well-being. It focuses on the process, not the product, and you do not have to be an artist to participate. Movement therapy (2 p.m.) uses mindful movement (yoga, Feldenkrais Method, and movement to music) to reduce mental, physical, and emotional stress. Prentice Women s Hospital 250 East Superior Street, Room Q or or trupti@northwestern.edu Dance Classes These dance classes are designed to enhance balance, gait, movement, and coordination. Taught by Citlali Lopez-Ortiz, PhD. Chicago: Mondays and Wednesdays, 10 11:00 a.m. Joffrey Tower, 10 East Randolph Street, 3rd floor, Studio D Evanston: Fridays, 9:30 10:30 a.m. Dance Center, 1934 Dempster Street NIM Fitness and Wellness Classes Northwestern Integrative Medicine offers fitness, meditation, and customized classes, including tai chi for Parkinson s. -medicine or Parkinson s Central Parkinson s Central, a free app designed by the National Parkinson Foundation, contains up-to-date information on the management of Parkinson s for people living with the disease and their caregivers. It is available for download from the itunes App Store and Android Market. Parkinson s Disease Support Group First Tuesday, 10:30 a.m. 2 p.m. May 6: The Feldenkrais Method: Awareness through Movement; Terri Cigelnik, certified instructor June 3: Rock Steady Boxing for PD; Susan Eichensehr, MSCEP Northwestern Memorial Hospital 201 East Huron Street, Feinberg Pavilion, 3rd floor, Room A or or trupti@northwestern.edu Parkinson s Exercise Essentials DVD This free DVD developed by the Davis Phinney Foundation offers a wide range of workouts that can be tailored to any fitness level, from beginner to advanced. or RIC s Adaptive Sports and Fitness Program The Rehabilitation Institute of Chicago provides a place for people with physical disabilities to reach their fullest potential through fitness, recreation, and competitive sports, including specialized programs for people with Parkinson s. Classes are offered in Chicago, Deerfield, and Willowbrook. -and-fitness/membership or Spinning for Parkinson s Stationary bicycling therapy has been shown to reduce PD symptoms and improve motor function by as much as 35 percent. A family member may also participate for free. Tuesdays, 7:30 8:30 a.m. Rehabilitative Services Northwestern Lake Forest Hospital 1200 North Westmoreland Road, Suite or register at the front desk Tai Chi Qigong Class This class is for all abilities. Tuesdays, 11 a.m. 12:15 p.m. Immanuel United Church of Christ 9815 South Campbell Avenue, Evergreen Park , or anna@annayork.com Parkinson s Disease and Movement Disorders Center 3

4 Welcome, New Staff As a clinical research assistant for the Parkinson s Disease and Movement Disorders Center, Jennifer Olson facilitates and coordinates inpatient and outpatient clinical research studies as part of a multidisciplinary team. She is currently working on a Michael J. Fox Foundation funded observational study for early PD patients as well as an investigatorinitiated trial that is studying the use of Selegiline in treating fatigue in Parkinson s patients. Olson previously worked in quality and regulatory control at Medline Industries. She also has been a hospice volunteer at a community clinic. She obtained a bachelor s degree in neuroscience and chemistry, with a minor in psychology, from Indiana University. Pamela R. Palmentera is the new center coordinator and clinical social worker. She develops and manages the center s educational and programmatic initiatives and provides social work and case management services to patients, families, and groups. Palmentera has been a part of Northwestern Medicine since 2004, implementing the bereavement program of the Hospice and Palliative Care Program and serving on the NM Ethics Committee. She was a member of the Bereavement Professional Steering Committee of the National Council of Hospice and Palliative Care Professionals for two terms. She serves on the governing board of the Cathedral Counseling Center. Before coming to Northwestern Medicine she worked in child welfare. Palmentera completed both her bachelor s and master s degrees at the University of Illinois at Chicago, specializing in children and families in her MSW from the Jane Addams College of Social Work. As a clinical research assistant for the center, Bradley Schifrien manages multidisciplinary clinical research studies, including trials for PD patients involving complementary and integrative approaches to care, such as yoga. He also administers a patient registry for the National Parkinson Foundation 4 Parkinson s Update newsletter Spring 2014 Vol. 18

5 Introducing Our New Website Staff of the Center (left to right): Darren Gitelman, MD; Kathleen Nannini, RN, BSN; Danny Bega, MD; Christine Giblin, RN, BSN; Karen Williams; Pamela Palmentera, LCSW; Vanessa Williams; Melanie Karl, RN, BSN; Ilse Salinas; Cindy Zadikoff, MD; Jennifer Olson; Kristin Larsen, MA, SLP; Trupti Patel, MPP; Onur Melen, MD; Tanya Simuni, MD; Santiago Toledo, MD (Not pictured: Bradley Schifrien, Catherine Danielle Tan) Quality Improvement Initiative that aims to establish and validate the care practices that lead to the best clinical outcomes. Schifrien graduated from Northwestern University with a bachelor s degree in psychology and biological sciences, concentrating in neurobiology. He has experience working in academia in both basic and clinical research and in collaborative research efforts with industry. As a research study coordinator for the center, Catherine Danielle Tan is responsible for coordinating industry-sponsored and investigator-initiated clinical drug trials for moderate-to-advanced PD patients. She previously worked for the Feinberg School of Medicine s gastrointestinal and endocrine surgery area, where she managed a study focusing on women with fecal incontinence and obstetric lacerations. Tan graduated from the University of Notre Dame with a bachelor of science in biological sciences and psychology. Aside from a redesigned look, the Parkinson s Center s new website features improved navigation and up-to-date information. It continues to serve as a comprehensive central point for patients, families, advocates, partner organizations, and the medical community to access needed resources, discover current programs, learn and participate in innovative research, and obtain general information that benefits the Parkinson s community. Please visit We think you ll enjoy the new look! Parkinson s Disease and Movement Disorders Center 5

6 Managing Parkinson s Disease: An Approach to Health and Wellness By Danny Bega, MD Parkinson s disease traditionally has been viewed as a motor disorder involving four cardinal symptoms tremors, slowness, stiffness, and problems with posture and mobility and the focus of clinical care has been on their medical management. Over the last decade we have come to recognize the importance of nonmotor symptoms as well and how they can affect quality of life, often even more than the motor symptoms. These include depression, apathy, fatigue, sleep dysfunction, cognitive impairment, and disturbances of bowel, bladder, or sexual function. They are intimately connected to the motor symptoms and to overall daily function. Our thoughts and moods contribute to how we feel, how we perceive our world, and, in turn, how we experience Parkinson s disease. A common feeling among people with PD or any chronic disease, for that matter is a sense of loss: loss of control over the disease course, loss of independence, and loss of self-identity. In spite of this, the key to wellness is an understanding that you are not powerless that you can directly affect your quality of life by taking ownership of your mental, Meditation and breathing exercises aspects of tai chi and yoga can actually reduce the release of chemicals that trigger the stress response. emotional, spiritual, and physical well-being. Since the symptoms of PD can manifest as motor and nonmotor impairments, a comprehensive approach to care focused on healing the mind and the body together is important. Physical Activity Exercise is important for everyone in improving strength and cardiovascular health, but it also has unique properties that make it essential to the management of Parkinson s disease. PD is caused by the degeneration of dopamine-producing cells in the substantia nigra, the area of the brain responsible for making connections that facilitate movement. While scientists have not yet discovered a way to regenerate these lost cells, we do know that the rest of the brain retains neuroplasticity the ability to learn and to make new connections throughout life. Exercise is known to promote the release of dopamine, the chemical that is deficient in PD, as well as brain growth factors; these chemicals may facilitate neuroplasticity and make movements more automatic through the formation of new connections. While flexibility and balance tend to decline with age, these problems are exaggerated in PD. Improving strength and flexibility through exercise reduces the risk of falling and hospitalization and is vital for improving quality of life. Physical activity is integral in improving nonmotor function. Studies show that regular exercise can reduce fatigue, improve mood (through the release of natural endorphins), enhance immune function, improve sleep, and possibly even improve cognition. There are two important points to remember in determining what type of physical activity to do: Any activity is likely to be better than no activity at all. You 6 Parkinson s Update newsletter Spring 2014 Vol. 18

7 are more likely to keep doing an activity you enjoy. Studies show that strength and resistance training, aerobic exercise, dancing, physical therapy, tai chi, yoga, and even certain interactive video games can be beneficial forms of physical activity in PD. In addition, exercises that fall into the category of mindfulness therapy can be beneficial. The stress response of the body is under the control of the nervous system. Fear, anger, depression, anxiety, and other emotions are driven by chemicals released by either an overactive or underactive nervous system. For example, most people notice that tremors tend to worsen under stressful situations. How the brain interprets and responds to internal stress can be shaped by certain activities. Meditation and breathing exercises aspects of tai chi and yoga can actually reduce the release of chemicals that trigger the stress response. Expressive therapies such as art, music, or dance may provide an outlet for emotional expression and in turn facilitate movement, improve mood, and increase motivation. Nutrition While maintaining a healthy diet and weight is important for everyone, additional nutritional factors are particularly important for the PD population. Vitamin D and calcium: Bone health is a significant issue in PD because of the risk of bone fractures associated with falling. Older age, lower body weight, and limited exposure to sunlight (a common occurrence in Chicago) may increase the risk of bone loss. It is important to prevent bone loss by ensuring that your diet contains adequate amounts of calcium and vitamin D, either from foods like milk, yogurt, and fish or through dietary supplements; increasing exposure to sunlight; and performing weightbearing exercises. Your primary care doctor can recommend a bone-density check. Inflammatory foods and antioxidants: Inflammation is the result of damage to tissue that results from the body s response to certain stimuli that it perceives as harmful. Inflammation is at least partly involved in many common chronic disease states, including arthritis, diabetes, cardiovascular disease, cancers, and autoimmune diseases, and there is evidence that it may play a role in the development of PD as well. Certain foods seem to promote inflammation in certain tissues of the body more than others do. They include red meat, high-fat dairy products, partially hydrogenated oils, and simple carbohydrates such as bagels, rice, pasta, and sweets. Although there is no evidence directly linking these foods to PD or showing that avoiding these foods is protective, most nutritionists would argue The Mediterranean diet includes many foods with anti-inflammatory and antioxidant properties, such as olive oil, fruits and vegetables (particularly green leafy vegetables, colorful berries, nuts, and seeds rich in vitamin E), fish, and red wine in moderation. Parkinson s Disease and Movement Disorders Center 7

8 Health and Wellness continued from page 7 Social Work Services Nutrition Neurologist Consultation that everyone should avoid these proinflammatory foods as much as possible. The flip side of the coin is eating anti-inflammatory foods and foods with antioxidant properties. Antioxidants are substances that neutralize unstable molecules that float around and cause damage to tissues or cells. A diet high in these substances may be beneficial in PD. One such diet, the Mediterranean diet, includes many foods with anti-inflammatory and antioxidant properties, such as olive oil, fruits and vegetables (particularly green leafy vegetables, colorful berries, nuts, and seeds rich in vitamin E), fish, and red wine in moderation. In conclusion, Parkinson s is a progressive disease that affects every person differently. It s not only the symptoms that vary from person to person. Ultimately the Physical and Occupational Therapy Education and Support Groups Speech and Swallow Therapy Comprehensive Care Model unique way in which they are experienced is what determines quality of life. Conventional treatments are helpful in controlling many of the observable symptoms of PD, but they work best as part of a comprehensive healthy lifestyle focused on physical, mental, emotional, and nutritional well-being. The above recommendations are not a magic recipe for curing PD, and they require substantial effort and commitment, but a healthy lifestyle can give a person with PD the ability to shape his or her own experience of the disease and to regain control over how the disease affects quality of life. Danny Bega is a movement disorders fellow at the Parkinson s Disease and Movement Disorders Center. Caregivers, You ll Be Honored The Parkinson s Disease and Movement Disorders Center will honor caregivers of people with PD during Parkinson s Awareness Month in April. The remarkable, hardworking caregivers of husbands, wives, other family members, friends, and neighbors with Parkinson s disease and other movement disorders will be thanked at a Caregiver Appreciation Celebration from 11:30 a.m. to 2 p.m. Saturday, April 26, at the Rehabilitation Institute of Chicago s outpatient clinic at 755 Skokie Boulevard in Northbrook. This free event is being held in partnership with the National Parkinson Foundation, the Feinberg School of Medicine, the Rehabilitation Institute of Chicago, and Right at Home. To attend, please RSVP to ppalment@nmff.org or Parkinson s Update newsletter Spring 2014 Vol. 18

9 Save the Dates EDUCATIONAL EVENT: QUALITY OF LIFE WITH PD Empowering people with Parkinson s disease to improve their quality of life will be the focus of an educational event sponsored by the National Parkinson Foundation in collaboration with Northwestern s Parkinson s Disease and Movement Disorders Center. Offered for the greater Chicagoland Parkinson s community, the event will take place on Saturday, June 7, at the Northern Illinois University Conference Center in Naperville. For more information, please contact Pamela Palmentera at ppalment@nmff.org or Megan Conyers at mconyers@parkinson.org. ANNUAL PATIENT AND FAMILY SYMPOSIUM The Parkinson s Center will host its annual Patient and Family Symposium on October 11 at Northwestern Memorial Hospital. The symposium will feature leading movement disorders physicians and faculty from Northwestern University who will present on current research and best practices in Parkinson s care. The physicians will take questions from the audience following their presentations, and the conference will conclude with workshops on different aspects of PD. The fall 2013 symposium drew more than 200 patients, families, and caregivers. Speakers explored issues related to genetics, new treatment options, surgical interventions, exercise, and sleep disorders in PD. There were also breakout sessions and an exhibition showcasing the artistry of those living with PD. Center Uses NPF s Aware in Care Kits Northwestern s Parkinson s Center is providing the National Parkinson Foundation s Aware in Care hospitalization kits free of charge to patients in our clinic and support groups. NPF introduced the Aware in Care kits at the 2011 NPF Centers Leadership Conference. Intended to improve delivery of care, the kits help hospitalized PD patients share information about their symptoms and needs with hospital staff. NPF produced the kits in response to alarming findings that during a hospital stay three out of four people with PD do not get their medications on time and that patients with PD suffer more avoidable complications than do other patients. The kit includes the following: action plan with information about how to prepare for one s next hospital visit medical alert card with emergency contact information medications form and a magnet for displaying it in the hospital room PD ID bracelet PD fact sheet for the hospital chart and staff I Have Parkinson s reminder slips for the hospital care team thank-you card to give to hospital staff who provide high-quality care Parkinson s Disease and Movement Disorders Center 9

10 Partnering with NPF The Northwestern Medicine Parkinson s Disease and Movement Disorders Center, recognized by the National Parkinson Foundation as a Center of Excellence, collaborates with NPF on events such as conferences for caregivers and the annual fundraising event, Moving Day Chicago. The PDMDC uses support from NPF to sponsor patient/caregiver symposia and to offer support groups and classes for Parkinson s patients in communities with limited clinical and educational services. In turn, Northwestern assists the foundation in implementing NPF programs in Illinois. Founded in 1957 and located in Miami, NPF is a premier international organization funding research and providing support services, education, outreach, and advocacy for persons with PD and their loved ones. Its Centers of Excellence must provide the highest quality in patient care, implementation of best practices, leadership in developing targeted research to extend the knowledge of PD, and innovative models of education, services, and outreach. Community Outreach Event April 22 People with Parkinson s disease and their families and caretakers are welcome to attend the annual Parkinson s community outreach event April 22 during Parkinson s Awareness Month. It will be held from 11 a.m. to 2 p.m. at the Rehabilitation Institute of Chicago, 345 East Superior Street. Innovation in Motion: Maximizing Your Abilities will focus on research and community resources for continuing wellness and promoting ability. Awareness talks will be held from noon to 1:30 p.m. in the RIC Heyworth Rooms on the second floor. A resource fair in the building lobby will feature members of RIC s Center for Parkinson s Rehabilitation and Northwestern Parkinson s Center, advocates, educators, researchers, and vendors. For more information, please contact the RIC s LIFE Center at Northwestern and NPF work together to deliver high-quality patient care, make a difference, and form a united front against Parkinson s. 10 Parkinson s Update newsletter Spring 2014 Vol. 18

11 Early-Diagnosis and Young-Onset Patient Education Support Group When to Tell Your Employer? Saturday, April :30 a.m. Northwestern Memorial Hospital Northwestern Medicine Academy Conference Room F Feinberg Pavilion, 251 East Huron Street, Chicago 8:30 9:05 a.m. Registration and Welcome 9:05 9:55 a.m. Keynote Address: Employment Law and Parkinson s Disease: The Legal Implications of Disclosure Karyn L. Bass Ehler, attorney 9:55 10 a.m. Questions and Answers 10 10:25 a.m. Presentation: Disclosing to Family and Friends: Whom Should I Tell? Pamela R. Palmentera, LCSW, coordinator and clinical social worker, Northwestern Medicine s Parkinson s Disease and Movement Disorders Center 10:25 10:30 a.m. Questions and Answers 10:30 a.m. Evaluation Get Involved Interested in supporting the Parkinson s Disease and Movement Disorders Center? Make a gift to support Parkinson s research and clinical care at Northwestern by visiting Join the center s advisory council of donors and community and corporate leaders who promote charitable support of Parkinson s research at Northwestern. Contact Attend an event that supports Parkinson s research at Northwestern, such as A Night Out for Parkinson s on April 26 at the Herrington Inn & Spa in Geneva (see and the fourth annual Sub-5 Century bicycle ride September 7 (see The event is free and includes complimentary parking. To register, please call Pamela Palmentera at Future support group sessions: July 26 and October 25 Parkinson s Disease and Movement Disorders Center 11

12 Add Boxing to PD Therapies By Sheila Galloro, Northwestern Medicine Media Relations Sometimes a left hook is just what the doctor ordered. A special boxing class for people with Parkinson s disease and their caregivers will meet at 1 p.m. on June 3 at Feinberg Pavilion, 201 East Huron Street, Third Floor, Room A. It will be led by instructors from Rock Steady Boxing, the first boxing gym in the country dedicated to teaching boxing drills and routines to people living with PD. Every day we are learning about new ways for people living with Parkinson s to enhance their quality of life, says Parkinson s Center coordinator and clinical social worker Pamela Palmentera. It turns out that boxing is one of those perfect workouts for both the mind and body. These classes have proven that anyone, at any level of Parkinson s, can actually lessen their symptoms and lead a healthier and happier life. Paula Weiner is part of a Northwestern Medicine Parkinson s disease support group that is These classes have proven that anyone, at any level of Parkinson s, can actually lessen their symptoms and lead a healthier and happier life. Pamela Palmentera, Parkinson s Center coordinator and clinical social worker Patient care is much more than just medical; it s caring for the whole person. Tanya Simuni, Parkinson s Center director hosting the boxing class. The Chicago resident was diagnosed with PD three years ago when she noticed a tremor in her hand that wouldn t go away. Since that day Weiner has been more active than ever, taking art classes and becoming a tai chi coach. Every Monday she takes a bus down Lake Shore Drive to lead her tai chi class. It s all about staying active, says Weiner, 78. I ve done water aerobics and I ll try boxing. Sitting around doing nothing may be easier, but it s certainly not going to help me in the long run. Patient care is much more than just medical; it s caring for the whole person, says Parkinson s Center director Tanya Simuni. Parkinson s patients may not have total control of their disease, but they can control how they let the disease affect them. Activities such as boxing have great psychological and physical benefits. We are hoping to help these patients find new means of fulfillment in their lives while also addressing some of the physical components of their illness. There are more than 1 million people in the United States diagnosed with Parkinson s disease, and more than 60,000 people are added each year. 12 Parkinson s Update newsletter Spring 2014 Vol. 18

13 Lake Forest Hospital Partners with Parkinson s Center Three Northwestern Lake Forest Hospital physicians neurologists Laura Goldstein, Ian Katznelson, and Charulatha Nagar have joined the Parkinson s Disease and Movement Disorders Center. By partnering with the center, the hospital is able to offer patients with Parkinson s disease and their families the center s specialized and collaborative care, extending from a comprehensive neurology examination to evaluation to physical, occupational, and speech therapies. The new partnership also enhances the innovative and interdisciplinary approach of Northwestern Lake Forest Hospital s Rehabilitative Services Parkinson s Clinic. Clinic therapists are experienced in designing individualized exercise, balance, and movementpattern programs. They also are certified in LSVT BIG, a whole-body program to improve the amplitude and fluidity of movement for walking and everyday activity, and LSVT LOUD, a method to improve voice and speech in people with PD. The rehabilitation team offers innovative approaches to improve balance, including the use of the balance-based torso vest, which is weighted to improve balance for those whose neurologic conditions cause stability losses. Goldstein, Katznelson, and Nagar are available to provide Laura Goldstein, Ian Katznelson, Charulatha Nagar comprehensive neurological assessment for new patients at their offices in Lake Forest and Glenview. To schedule an evaluation in Lake Forest, please call ; in Glenview, The Rehabilitative Services Parkinson s Clinic is also accepting new patients; call to register. Appointment requests for both physician consultations and therapy evaluations also may be made online at Parkinson s Disease and Movement Disorders Center 13

14 Movement Disorders Clinical Trials For information on participating in any of the following movement disorders clinical trials, please call EARLY PARKINSON S DISEASE G-PPMI The objective is to identify genetic markers of PD and their effect on PD progression. The study is recruiting PD patients, non-pd patients of Ashkenazi Jewish descent who have a first-degree relative with PD, and non-pd patients with a first-degree relative with a LRRK2 or an SNCA genetic mutation. Funded by the Michael J. Fox Foundation. PPMI Study The objective is to identify clinical, imaging, and biologic markers of PD progression for use in clinical trials of disease-modifying therapies. The study is recruiting non-pd subjects with sleep disorders and non-pd subjects who have lost their sense of smell. Funded by the Michael J. Fox Foundation. Yoga Study This study is looking at the potential benefits of yoga compared with conventional resistance exercise for PD. Participation consists of 24 classes over 12 weeks and two clinic visits. Consider making a personal contribution to research by participating in a clinical trial. Clinical research may lead to the discovery of new possibilities in the control or the delay of Parkinsonian symptoms. All study-related care is provided at no charge. For information about participation in clinical trials, please contact the Movement Disorders Research Office by at pdclinicaltrials@northwestern.edu, by phone at , or by fax at ADVANCED DISEASE Amantadine This study is looking at the potential benefits of the FDA-approved medication amantadine on freezing of gait. Patients are required to be both on and off medication. Participation includes four clinic visits and one telephone interview. Istradefylline This study is looking at the potential benefits of the FDA-approved medication istradefylline on dyskinesias and motor fluctuations normally associated with levodopa therapy. Participation consists of seven clinic visits and one telephone call. Funded by Kyowa Hakko Kirin Company. COGNITION TVP-1012/PM106 (Moderato) This 24-week study is investigating whether 1 milligram a day of rasagiline (Azilect) is more effective than a placebo in improving cognitive function in mild cognitive impairment. Funded by Teva-Branded Pharmaceutical Products R&D. FATIGUE Selegiline This study is measuring the efficacy of the FDA-approved medication Selegiline in reducing fatigue symptoms in PD patients. Participation consists of four clinic visits. CERVICAL DYSTONIA CD-FLEX The purpose is to evaluate the relative efficacy of short, flexible dosing and long, flexible dosing of Xeomin in subjects who report they received therapeutic benefit from onabotulinumtoxina (Botox ) for less than 10 weeks. Patients are asked to complete questionnaires daily or weekly at home and during 12 to 17 clinic visits. Funded by Merz Pharmaceuticals. 14 Parkinson s Update newsletter Spring 2014 Vol. 18

15 Q & A : Parkinson s Disease Therapy Northwestern Memorial Hospital physical therapists Christine Nelson and Kristen Smigelski answer questions about the benefits of physical therapy for Parkinson s treatment, and when and how to find a therapist. What effect does exercise have on PD? Regular exercise can assist with symptom management, including improving gait pattern, balance, strength, and coordination. Exercise helps slow disability from the disease, helping to prevent complications such as falls and decline in functional mobility. What kinds of exercises are the best for persons diagnosed with Parkinson s? Parkinson s disease can cause postural changes such as rounded shoulders, forward head and neck, and a stiff trunk. Exercises that incorporate improving posture and flexibility can offset these changes. Refer to a physical therapist for an individualized program. When should I go to a physical therapist? As with any progressive neurological disease, being proactive is important. When you notice a small change in your ability to complete daily tasks such as getting up from a chair, walking, or climbing stairs, you should see your doctor and discuss a possible referral to a physical therapist. How can I find appropriate physical therapy for Parkinson s? View the American Physical Therapy Association website (apta.org) for a physical therapist near you who specializes in neurological disorders, or ask your doctor. Is tai chi of any benefit to people with Parkinson s? Tai chi, a Chinese martial art that incorporates range of motion and balance by sequencing slow rhythmic poses, has been shown to decrease fall risk and improve coordination in those with Parkinson s disease. When should I use an assistive device? If you are concerned about your safety while walking, you should have a physical therapist evaluate your walking pattern to assess the need and appropriately prescribe an assistive device. Are there tips to help with freezing? Freezing is the temporary, involuntary inability to move. For instance, your feet may seem to stick to the floor, or you may be unable to get up from a chair. Freezing creates a danger of falling because the beginning and the end of a freezing episode are unpredictable. Research has shown that quick and direct auditory cues such as 1, 2, 3, step! or Go! can help break a freezing episode. Parkinson s Disease and Movement Disorders Center 15

16 Parkinson s Disease and Movement Disorders Center 710 North Lake Shore Drive, 11th floor Chicago, Illinois Nonprofit Organization U.S. Postage PAID Northwestern University Calendar Northwestern Medicine s Parkinson s Disease and Movement Disorders Center is proud to be a National Parkinson Foundation Center of Excellence. CONTACT or CLINICAL TRIALS PDclinicaltrials@northwestern.edu Medical director: Tanya Simuni, MD Parkinson s Update editors: Danny Bega, MD; Pamela Palmentera, LCSW, ppalment@nmff.org; Trupti Patel, MPP, trupti@northwestern.edu Please contact us to be added to our mail or list or to update your address. We also welcome your comments and letters. INNOVATION IN MOTION: MAXIMIZING YOUR ABILITIES Tuesday, April 22, 11 a.m. 2 p.m. Rehabilitation Institute of Chicago 345 East Superior Street, Chicago EARLY-DIAGNOSIS AND YOUNG-ONSET SUPPORT GROUP Saturday, July 26, 9 10:30 a.m. Northwestern Medicine Glenview Outpatient Center 2701 Patriot Boulevard, Glenview or ppalment@nmff.org Northwestern University is an equal opportunity, affirmative action educator and employer Northwestern University. All rights reserved. Produced by University Relations. 4-14/2M/AE-VL/1647-1