VIEWS FROM WITHIN: A Lewy Body Video Series Revealing Firsthand Experiences of People Living with Lewy Body Dementia, their Caregivers, and Expert Physicians.
NEW YORK – March 29, 2023 – PRLog — This difficult-to-
Lewy Body Dementia Resource Center (LBDRC) has released its exclusive video series, VIEWS FROM WITHIN, presenting firsthand experiences of people living with Lewy body dementia (LBD), their caregivers, and expert physicians. Crucial information and personal experiences about little-known multiple symptoms and numerous stages are shared in order to heighten awareness of LBD’s manifestations, and the difficulties families face in getting the correct diagnosis and the ensuing challenging care.
The series, a first of its kind, is presented in 10 separate segments of approximately 20 minutes in length, each with a focus on one specific difficult LBD symptom, such as hallucinations, fluctuations, behavioral issues, and movement issues.
Lewy body dementia is the second most common form of progressive dementia after Alzheimer’s disease and affects more than 1.4 million Americans. It is widely misdiagnosed, as it can mimic Alzheimer’s disease, Parkinson’s disease, or a psychiatric disorder. More people have LBD than Amyotrophic Lateral Sclerosis (ALS), Muscular Dystrophy, Cerebral Palsy, and Frontotemporal Dementia COMBINED. And though more people in the United States have LBD than are HIV positive, LBD is still widely unknown.
“It is amazing that even with these staggering statistics, the phrases “Lewy what?” and “How do you spell that?” are still what we constantly hear,” says Mary Lou Falcone, founder of M.L. Falcone Public Relations, board member of the Lewy Body Dementia Resource Center, and author of I Didn’t See It Coming: Scenes of Love, Loss, and Lewy Body Dementia (Publication date October 3, 2023, by East End Press).
Dr. Jason Cohen, a member of the LBDRC board and a neurologist and dementia specialist at Montefiore Medical Center and the Albert Einstein College of Medicine in New York, says, “Knowledge is critical for my patients and their families: knowledge that there is a reason for all the different symptoms and knowledge that they are not alone.”
Among those who had LBD are Robin Williams, Tom Seaver, Dina Merrill, and Estelle Getty. Currently, Ted Turner has LBD, along with many others who are undiagnosed or who have not made their diagnoses public.
“This video series has been created to help the public understand the complexities of this neurodegenerative brain disease as well as to guide those searching for a correct diagnosis, those who have this disease, and the loved ones caring for them,” says Norma Loeb, Executive Director of the Lewy Body Dementia Resource Center.
Views From Within: A Lewy Body Video Series can be viewed on Lewy Body Dementia Resource Center’s website at: https://lewybodyresourcecenter.org/
About Lewy Body Dementia Resource Center
The Lewy Body Dementia Resource Center (LBDRC) is a charitable 501(c)(3) non-profit organization based in New York. It was created to provide much-needed resources and personalized assistance to those with Lewy body dementia (LBD) and their families. LBDRC’s mission is to raise crucially needed awareness of LBD through the dissemination of information to healthcare professionals and the general public, offer loving support and services to people with LBD and their care partners, and to promote essential scientific advances.
LBDRC has the only live Helpline for LBD in the United States, available 365 days a year at 516-218-2026 or 833-LBD-LINE. They offer numerous support groups locally and nationally and have over 8,000 supportive resources on their website at: www.lewybodyresourcecenter.org.
To contact Norma Loeb, Executive Director of LBDRC, please call 646-248-9292 or email norma@lbdny.org.
