The first of a series of six new free online PD ExpertBriefings seminars has been launched by the Parkinson’s Disease Foundation with more practical tips for people living with Parkinson’s and continuing education for health professionals about under-recognized aspects of the progressive neurological disorder.
“Many people living with Parkinson’s disease experience symptoms we may not initially understand, such as changes in our mood, motivation or our ability to multi-task. It may take years to realize these changes are part of our disease,” says Karen Smith of Evansville, Indiana, Vice Chair of the PDF’s People with Parkinson’s Advisory Council (PPAC), launched in 2006 to ensure that the perspective of people living with Parkinsons is integrated into our program development and priority setting. Charged with providing input on PDFs priorities and programs; helping PDF identify and meet the needs of people living with Parkinsons; and serving as liaisons between PDF and the community, this administrative group guides the PDF’s mission to support research and ideas that will improve the lives and futures of people touched by Parkinson’s. The PDF considers the advisory council members’ perspectives essential to assuring the relevance and usefulness of its work.
“Through PD ExpertBriefings, PDF is raising awareness of common yet under-recognized aspects of the disease and ensuring that people with Parkinson’s have the tools to manage them,” explains Ms. Smith, while an employee of the Pharmaceutical Quality Control Department at Bristol Myers Squibb Pharmaceutical Company, was diagnosed with young onset Parkinsons disease at the age of 42. Ms. Smith left Bristol Myers shortly after her diagnosis, and has devoted herself to Parkinson’s advocacy.
Parkinson’s disease is the second most common neurodegenerative disease after Alzheimer’s — affecting nearly one million people in the US. Although promising research is being conducted, there is currently no cure for Parkinson’s disease, a slowly progressing neurodegenerative disorder caused by death of dopaminergic neurons in in a region of the midbrain called substantia nigra for reasons unknown. Dopamine is a neurotransmitter that carries signals between the areas of the brain that regulate and control smooth, purposeful motor movement when performing routine tasks like eating, writing and shaving.
Common first symptoms of Parkinson’s include tremors, rigidity and slowness of movement. While the motor symptoms can be treated with medication the disease’s progression cannot be prevented, and benefits of medication may fade as the disease progresses, and/or side effects can become problematic. People with late stage Parkinson’s disease have many disabling symptoms including: trouble walking, impaired posture and balance, muscle stiffness and tremors in the arms and hands that make it difficult to perform everyday tasks.
In addition, Parkinson’s disease may cause non-motor symptoms such as sleep problems, depression, and anxiety, which unfortunately are not alleviated by current Parkinson drugs. An estimated 7 million people worldwide are living with Parkinson’s disease, and the National Institutes of Health estimates that about one million Americans have Parkinson’s disease, with some 50,000 Americans being diagnosed with new Parkinson’s cases annually.
The latest Parkinson’s Disease Foundation ExpertBriefings series kicked off September 15, addressing a commonly-discussed topic, “Nutrition and Parkinson’s Disease,” from a rarely-discussed viewpoint: weight management, showing how Parkinson’s disease, combined with issues related to nutrition, appetite, swallowing and medications, can lead to unwanted weight loss and gain. The seminar, led by Heather Zwickey, Ph.D., Dean of Research and Graduate Studies, Director of the Helfgott Research Institute and Professor of Immunology at the National College of Natural Medicine in Portland, Oregon, will provide practical strategies for managing both aspects of the disease.
The series also includes seminars discussing more frequently overlooked Parkinson’s disease aspects of such as cognitive issues, dementia, anxiety, apathy and depression, also including the PDF’s annual update on experimental treatments in the pipeline for Parkinson’s disease, with a particular focus on gene and cell therapies.
“The Parkinson’s Disease Foundation is working each day to end this disease and put ourselves out of business,” says PDF President Robin Anthony Elliott. “Until the day comes when we close our doors, we tell our community: they are open to you. Please take advantage of our free programs, including this latest series of educational PD ExpertBriefings, to find the tools for living your best life with Parkinson’s disease today.”
Qualifying health professionals can earn free continuing education credits by participating live or within 30 days of any PD ExpertBriefing. The full schedule appears in the Appendix at the end of this article.
Since 2009, PDF has presented more than 40 PD ExpertBriefings, which are available on its website at http://www.pdf.org/parkinsononline and via DVD. PDF offers continuing education credits to health care professionals who participate in PD ExpertBriefings through its sponsorship of the American Society on Aging.
The 2015-2016 series of PD ExpertBriefings covers topics chosen with the help of the Parkinson’s disease community, including more than 1,000 survey respondents and seven regional Parkinson’s disease organizations, and has been been designed in collaboration with the Dallas Area Parkinsonism Society (DAPS); Houston Area Parkinson Society (HAPS); Michigan Parkinson Foundation (MPF); Parkinson Association of the Carolinas (PAC); Parkinson Association of the Rockies (PAR); Parkinson’s Association (PA) and Parkinson Support Center of Kentuckiana (PSCKY). The series has been made possible by educational grants from Acadia Pharmaceuticals Inc. and Lundbeck LLC.
Appendix: PD ExpertBriefings Schedule
Nutrition and Parkinson’s Disease
Tuesday, September 15, 1:00 PM-2:00 PM ET
Heather Zwickey, Ph.D., Dean of Research and Graduate Studies, Director of the Helfgott Research Institute and Professor of Immunology, National College of Natural Medicine
Cognitive Issues: Advice for Parkinson’s Care Partners
In recognition of National Family Caregivers Month
Tuesday, November 10, 1:00 PM-2:00 PM ET
Rebecca Gilbert, M.D., Ph.D., Clinical Associate Professor of Neurology, NYU Langone Medical Center & NYU Langone Parkinson’s and Movement Disorders Center
Anxiety in Parkinson’s Disease
Tuesday, January 5, 2016, 1:00 PM-2:00 PM ET
Joseph H. Friedman, M.D., Director, Movement Disorders Program, Butler Hospital and Professor and Chief, Division of Movement Disorders, Warren Alpert Medical School, Brown University
Dealing with Dementia in PD
Tuesday, March 1, 2016, 1:00 PM-2:00 PM ET
Jennifer G. Goldman, M.D., M.S., Associate Professor, Section of Parkinson Disease and Movement Disorders, Department of Neurological Sciences, PDF Research Center at Rush University Medical Center
What’s in the PD Pipeline? Gene and Cell Therapies
Tuesday, April 12, 2016, 1:00 PM-2:00 PM ET
Roger Barker, M.B.B.S, M.R.C.P, Ph.D., Professor of Clinical Neuroscience and Honorary Consultant, Neurology, University of Cambridge and Addenbrooke’s Hospital
Apathy or Depression: Which One Is It?
Tuesday, June 14, 2016, 1:00 PM-2:00 PM ET
Dawn Bowers, Ph.D., Professor, Department of Clinical and Health Psychology; Area Head, Neuropsychology; Director, Cognitive Neuroscience Laboratory, McKnight Brain Institute, University of Florida
To participate online or by mobile device, visit http://www.pdf.org/parkinsononline or contact PDF at (800) 457-6676. Pre-registration is highly recommended. Online viewers can submit questions during the seminar.
PD ExpertBriefings are free.
Parkinson’s Disease Foundation