Second Leading Cause of Dementia Commonly Misdiagnosed
BOCA RATON, Fla. (PRWEB) May 31, 2018 -- The Lewy Body Dementia Resource Center (LBDRC) announced today the expansion of its resources to the State of Florida and the launch of an awareness video campaign (see video) featuring world renowned neuroscientist James E. Galvin, M.D., M.P.H., leading international expert on Alzheimer’s disease and Lewy Body Dementia. Dr. Galvin is also the Founding Director of The Comprehensive Center for Brain Health at the Charles E. Schmidt College of Medicine, Florida Atlantic University in Boca Raton, Florida. Under the guidance of Dr. Galvin, and in addition to the services they are already providing in New York, LBDRC will offer essential and personalized resources to LBD families living in Florida. The organization will soon be expanding its resources to California and Michigan.
Lewy Body Dementia was publicized in 2014 when beloved actor/comedian Robin Williams was diagnosed with the disease following an autopsy. Before his death, Mr. Williams had been diagnosed and treated for Parkinson’s disease and related depression. “Lewy Body Dementia is the second leading form of progressive dementia after Alzheimer’s disease and most people have never even heard of it,” says Norma Loeb, Founder and Executive Director of LBDRC, which includes a comprehensive website (lewybodyresourcecenter.org) and a Helpline (516-218-2026).
According to Dr. Galvin, “Lewy Body Dementia symptoms often mimic those of Alzheimer’s disease, Parkinson’s disease, or a psychiatric disorder.” Though it affects millions of people worldwide and more than 1.4 million Americans, it is still widely misdiagnosed, often leading to patients suffering severe side effects or potentially fatal results. In 2016, Dr. Galvin opened The Comprehensive Center for Brain Health to provide personalized care for the prevention and treatment of a variety of brain disorders. There are two clinical programs offered at the center: The Diagnostic and Treatment Clinic which provides expert clinical evaluations and treatments for patients with a wide range of memory disorders, including AD and LBD, and the Dementia Prevention Program which assesses an individual’s risk profile for developing neurological diseases by using state-of-the-art diagnostic tools. Dr. Galvin is working with the Lewy Body Dementia Resource Center to help provide resources to patients suffering from LBD in Florida, and he serves on their board of directors.
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Liz Goodman (516) 395.6363
[email protected]
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WHAT IS LEWY BODY DEMENTIA?
The National Institute on Aging (NIH) describes LBD as “a disease associated with abnormal deposits of a protein called alpha-synuclein in the brain. These deposits, called Lewy bodies, affect chemicals in the brain whose changes, in turn, can lead to problems with thinking, movement, behavior, and mood. Lewy bodies affect several different brain regions in LBD:
• The cerebral cortex: controls information processing, perception, thought, and language
• The limbic cortex: plays a major role in emotions and behavior
• The hippocampus: essential to forming new memories
• The midbrain: including the substantia nigra, is involved in movement
• The brain stem: important in regulating sleep and maintaining alertness
• Brain regions: important in recognizing smells (olfactory pathways)
WHAT ARE SYMPTOMS OF LEWY BODY?
• Visual hallucinations. They may include seeing shapes, animals or people.
• Movement disorders. Similar to Parkinson's disease, slowed mobility, shuffling.
• Poor regulation of body functions (autonomic nervous system). Blood pressure, pulse, digestive and
constipation.
• Cognitive problems. Similar to those of Alzheimer's disease, such as confusion, poor attention, visual-spatial
problems and memory loss.
• Sleep difficulties. Rapid eye movement (REM) sleep behavior disorder, which can cause physically acting out
dreams, insomnia, restless leg syndrome.”
WHAT IS THE LEWY BODY DEMENTIA RESOURCE CENTER (LBDRC)?
The Lewy Body Dementia Resource Center (LBDRC) is a charitable 501(c)(3) non-profit organization created to provide personalized essential resources and information to people with LBD, caregivers, and medical professionals. Founder and Executive Director, Norma Loeb, launched LBDRC in New York to provide LBD families with information on a local level and with a personalized approach. After her mother, Lillian, was misdiagnosed with several diseases—and eventually diagnosed with LBD—Norma realized there were very little resources available. What was even more disturbing to her was that few medical professionals understood how to diagnose or treat LBD. She soon discovered that patients were not only generally misdiagnosed but were also being mistreated with certain antipsychotic medications which could lead to severe side effects or potentially fatal results. In order to help bring awareness to LBD, Norma served on the board of the Lewy Body Dementia Association for three years and facilitated the only two LBD support groups in New York (in Manhattan and Nassau County) which have been taking place for over ten years. LBDRC now runs two additional support groups in Westchester and Suffolk Counties.
In 2016, together with four other former LBD caregivers, Norma launched the LBDRC website (lewybodyresourcecenter.org) which is dedicated to providing resources to LBD families on a local level and with a personalized touch. Through its Helpline (516-218-2026), their team provides individualized guidance and information not limited to the following:
• Information to help foster early diagnosis and enhance the quality of life for people with LBD and their care partners
• Neurologists specializing in LBD
• Adult day care programs with dedicated support
• Physical therapists and occupational therapists with knowledge of LBD
• Qualified home health aides, house call programs, hospice agencies, and much more
• Information on medications that have been known to worsen the symptoms of LBD
WHAT IS THE MISSION OF LBDRC.ORG?
The mission of the Lewy Body Dementia Resource Center is to raise crucial awareness of Lewy Body Dementia through the dissemination of information to health care professionals and to the general public. LBDRC also offers loving support and services to people with LBD and their care partners and helps to promote essential scientific advances for research. Members of the organization hold seminars and classes to help bring awareness to LBD. LBDRC has just expanded their Helpline service to Florida and will soon be expanding to other states.
LBDRC is working with producers Liz Goodman and David Holden of Mission Critical Health, a non-profit production company that produces evidence-based public health and medical education. The first video produced features a brief introduction to the symptoms of LBD by Dr. James Galvin (see video).
ABOUT DR. JAMES E. GALVIN
James E. Galvin, M.D., M.P.H. is one of the world’s leading experts in cognitive aging, dementia, and neurodegenerative diseases. Dr. Galvin is the Director and Founder of the Comprehensive Center for Brain Health. He is Professor of Integrated Medical Sciences and Associate Dean for Clinical Research at the Charles E. Schmidt College of Medicine, Florida Atlantic University. He is also Professor of Nursing and Medical Director of the Louis and Anne Green Memory and Wellness Center at the Christine E. Lynn College of Nursing, Florida Atlantic University. A Board-Certified Neurologist, he is also the Associate Dean for Clinical Research at the Charles E. Schmidt College of Medicine. Dr. Galvin has published over 200 original scientific papers, three textbooks, and directed over 50 clinical trials for dementia treatments.
ABOUT MISSION CRITICAL HEALTH
Mission Critical Health is a non-profit education initiative in partnership with the AMWA Preventive Medicine Task Force. Each production contains evidence-based public health and medical education programs citing trusted peer-reviewed science. This important information is delivered on video screens throughout healthcare facilities nationwide. Mission Critical Health’s evidence-based trustworthy content is supported through educational grants and sponsors. Mission Critical Health is not supported by advertising dollars and does not participate in product sales promotions. For more information, please contact Liz Goodman at 516-395-6363.
For more information or to donate to the Lewy Body Dementia Resource Center, contact Norma Loeb at 646-248-9292 or go to lewybodyresourcecenter.org.
Norma Loeb, Lewy Body Dementia Resource Center, http://lewybodyresourcecenter.org, +1 646-248-9292, [email protected]
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