This Difficult-to-Diagnosis Disease affects more than 1.4 million adults including celebrities Dina Merrill, Estelle Geddes, and Ted Turner.
(PRUnderground) August 31st, 2020
The 2014 death of beloved actor and comedian Robin Williams confused and devastated millions of people. An autopsy revealed the true culprit of his struggle was the widespread presence of Lewy bodies throughout his brain. Robin’s Wish, trailer available here, directed by Tylor Norwood, documents Williams’ experience with Lewy Body Dementia (LBD), detailing the painfully elusive nature of this disease. Susan Schneider Williams, Robin Williams’ widow, discusses her long journey toward finding answers for what she called the terrorist inside her husband’s brain. On September 1, the film will be available on iTunes, Amazon, Fandango, and other major platforms.
“Robin Williams struggled with getting the right diagnosis, which repeatedly parallels the experience we hear from people with LBD and their loved ones who call our helpline,” says Norma Loeb, executive director of the Lewy Body Dementia Resource Center, one of the consulting organizations for the film. “Being misdiagnosed can be dangerous because people with LBD are sensitive to medications, and the wrong drugs may cause severe reactions such as hallucinations or worse. The correct diagnosis is crucial to a better quality of life.”
Robin Williams isn’t the only celebrity who has suffered with Lewy Body Dementia, the second most common form of progressive dementia. Ted Turner, media proprietor and producer, currently has LBD and struggled to be diagnosed properly for several years. His daughter, Laura Turner Seydel, recently shared with Ms. Loeb, “Robin’s Wish is a very powerful and impactful film that tells the true story of Robin Williams’ end of life struggles. What he didn’t know was that he was battling Lewy Body Dementia. This film is very personal to me because my dad, Ted Turner, is also struggling with the disease. For most people like us, LBD flies under the radar, and it is often undiagnosed or misdiagnosed. With my Dad, it was undiagnosed for a number of years.” While the disease affects more men, women also get LBD including actresses Dina Merrill, Estelle Geddes, and Ms. Loeb’s mother, Lillian.
As detailed in the documentary, Lewy Body Dementia is a disease that’s notoriously difficult to diagnose due to its wide range of seemingly unrelated symptoms. “Although an estimated 1.4 million Americans have been diagnosed with LBD, many more may be experiencing symptoms without having reached a diagnosis,” says Ms. Loeb. In Robin Williams’ case, this progressive type of dementia progressed quickly and led to increasingly disturbing mental and physical symptoms. Despite access to the best medical care, doctors still misdiagnosed Robin Williams. Early signs often mimic symptoms of other diseases, such as cognition and memory issues (similar to Alzheimer’s disease), changes in gait (as in Parkinson’s disease), vivid and visual hallucinations, and sleep problems.
The hope of Robin’s Wish is that more persons and their medical practitioners will become aware of the disease and its difficulty to diagnose. Ms. Turner shared this, “It was important for the public that my dad bravely announced he had LBD in an interview with his friend Ted Koppel to let people know about this neurodegenerative disorder. It is shocking to me that over 1.4 million people in the U.S. have been diagnosed with a disease whose name is relatively unknown. My wish for the sake of those with the disease and their families and caregivers is that the film can help raise awareness and lead to increased funding for research that will lead to effective prevention and management, and of course ultimately a cure.”
“Since even those with excellent medical care often struggle to reach an accurate diagnosis, it’s crucial to raise awareness of Lewy Body Dementia to help all individuals find timely and appropriate treatment,” says Ms. Loeb. The Lewy Body Dementia Resource Center in New York aims to educate and support those with LBD, their loved ones, and the general public on all things related to this neurodegenerative disorder.
About Lewy Body Dementia Resource Center
The Lewy Body Dementia Resource Center is a charitable 501(c)(3) non-profit organization based in New York which was created to provide much needed resources and assistance to those with Lewy Body Dementia and their families. LBDRC’s mission is to raise crucially needed awareness of Lewy Body Dementia through the dissemination of information to health care professionals and the general public, offer loving support and services to people with LBD and their care partners, and to promote essential scientific advances.
The Lewy Body Dementia Resource Center is the only organization in the country that offers a live helpline at 516-218-2026. They also have over 8,000 supportive resources on their website at: www.lewybodyresourcecenter.org.
To contact Norma Loeb, executive director, LBDRC, please call 646-248-9292 or email firstname.lastname@example.org.Press Contact
Original Press Release.