Gerry asked me to post this news here.
Dr. Jim Galvin, an LBDA Scientific Advisory Council member and LBDA Board member, has set up a specialty center at NYU's Langone School of Medicine for Lewy Body Dementia. Those in the tri-state area may want to take advantage of this specialty center! (The LBD Center is part of the Barlow Center. For more info, see: www.barlowcenter.org
Robin's comment: Note that the name of the center is the "Lewy Body Disease Center." Though the term "Lewy Body Disease" typically includes Parkinson's Disease, in this case "Lewy Body Disease" refers to "Lewy Body Dementia" (DLB and PDD). It's unfortunate that the community can't agree on terminology.
Norma Loeb, the NYC and Long Island LBD support group leader, got some additional info from Dr. Galvin. Any patients are welcome to his LBD Center mentioned below (although at the present time he only accepts Medicare and self-pay). If families come from far away he will try to work with their primary care doctors to coordinate care. And, the LBD Center is the first of its kind in the NYC tri-state area and may be the first of its kind in the nation (and maybe the world) but to assert that would require some verification.
Here's the press release from NYU:
NYU Langone Establishes Specialty Center for Diagnosis and Treatment of Lewy Body Disease
Released: 9/29/2010 3:30 PM EDT
Source: New York University Langone Medical Center
Newswise â The Center of Excellence (COE) on Brain Aging at NYU Langone Medical Center has established a specialty center for the diagnosis and treatment of Lewy Body Disease, a multi-system disease involving disturbances of cognition, behavior, sleep and autonomic function. Lewy Body Disease, or LBD, affects an estimated 1.3 million individuals in the United States and is widely misdiagnosed because LBD symptoms closely resemble those of other more commonly known diseases such as Alzheimerâs and Parkinsonâs disease. The center is the first of its kind in the NYC tri-state area.
Lewy Body Disease is named for the scientist Friederich H. Lewy who discovered abnormal protein deposits that disrupt the brainâs normal functioning. Though there is no cure for the disease, early detection can result in effective disease management through the use of non-phamacological approaches to start, followed by maximizing use of antidementia medications and SSRI antidepressants. Typically, Alzheimerâs patients are given antipsychotic drugs to control behaviors, but patients with Lewy Body Disease can have serious reactions to certain types of these medications including trouble initiating movements and severe rigidity, even muscle breakdown and renal failure.
âBecause LBD can manifest itself to resemble other neurodegenerative diseases, it is misdiagnosed eighty percent of the time, and in many cases, it can have detrimental effects for the patient because of adverse reactions to certain medications,â says James E. Galvin, MD, MPH, director of clinical operations at the Center of Excellence on Brain Aging and professor of Neurology and Psychiatry at NYU Langone Medical Center. âEarly, accurate diagnosis allows for timely treatment that may prolong quality of life and independence, and also allows caregivers the opportunity to prepare for long-term needs.â
Dr. Galvin also serves on the Board of Directors for the Lewy Body Dementia Association and has published extensively in numerous medical journals on topics relating to Alzheimerâs, Parkinsonâs and LBD.
The LBD Center at NYU Langone offers a collaborative, patient-focused approach to diagnosis and treatment. Diagnostic evaluations involve both physical and neurological examinations, as well as patient and family interviews (including a detailed lifestyle and medical history) and neuropsychological and mental status tests. The patientâs functional ability, attention, language visuospatial skills, memory and executive functioning are assessed. Patient care teams include neurologists, neuropsychologists, psychiatrists, internists and geriatric specialists, as well as social workers to provide support and care for caregivers. Innovative programs in cognitive remediation and falls prevention can be tailored to individual patient needs.
The Center also offers a wide array of comprehensive and technologically advanced testing including brain imaging such as Magnetic Resonance Imaging (MRI) and Positron Emission Tomography (PET) scans, sleep evaluations and other laboratory studies. Additionally, patients have the opportunity to participate in clinical research projects involving imaging, cerebrospinal fluid and other biological markers leading to development of new therapeutics that are not available elsewhere.
âA common frustration expressed by caregivers is the inability to find physicians who are knowledgeable about LBD,â says Norma Loeb, the leader of the Lewy Body Dementia Associationâs New York Support Group. âAfter an eventual diagnosis, which may take months or even years to obtain â the disease often continues to be mistreated due to lack of specialized expertise. Being able to refer patients and caregivers to a clinic specializing in LBD, that treats the physical, mental as well as emotional aspects of the disease, will be invaluable,â she adds.
NYU Langoneâs Lewy Body Disease Center is located at the Pearl S. Barlow Center for Memory Evaluation and Treatment at the Silberstein Alzheimerâs Institute at 145 East 32nd Street in New York City. Physicians, patients and families needing information can call 212.263.3210 or go to NYU Langoneâs Lewy Body Disease website at www.barlowcenter.org
About the Center of Excellence on Brain Aging:
The Center of Excellence (COE) on Brain Aging (http://aging.med.nyu.edu/
) is devoted to research and clinical advances toward the treatment and cure of all neurodegenerative diseases affecting cognition. Its broad-scale research program, with hundreds of investigators across the NYU Langone network collaborating with the global scientific community, is focused on Alzheimer's disease and memory disorders; Parkinson's disease and movement disorders; atypical dementias; geriatric psychiatry and healthy brain aging. The clinical program consists of two major outpatient centers: The Pearl S. Barlow Center for Memory Evaluation and Treatment, which is the clinical component of the Silberstein Alzheimer's Institute; and the NYU Parkinson and Movement Disorders Center. The Barlow Center encompasses services for diagnosis and management of Alzheimer's disease and memory disorders of all origins, as well as specialty clinics, including one devoted to Non-Alzheimer's disease dementias and Prion diseases, and another which specializes in Normal Pressure Hydrocephalus, the only one of its kind in New York City.
About NYU Langone Medical Center:
NYU Langone Medical Center, a world-class patient-centered integrated academic medical center, is one of the nationâs premier centers for excellence in health care, biomedical research, and medical education. Located in the heart of Manhattan, NYU Langone is comprised of three hospitalsâTisch Hospital, a 705-bed acute-care tertiary facility, Rusk Institute of Rehabilitation Medicine, the first rehabilitation hospital in the world, with 174 beds and extensive outpatient rehabilitation programs, and the 190-bed Hospital for Joint Diseases, one of only five hospitals in the world dedicated to orthopaedics and rheumatologyâplus the NYU School of Medicine, one of the nationâs preeminent academic institutions. For more information, visit http://www.med.nyu.edu/