Lewy Body Dementia


MIAMI, Fla. (Ivanhoe Newswire) — More than one million Americans face a devastating disease that affects balance and destroys memory. Now, for the first time, researchers are studying treatments for people with Lewy body dementia.

“I did triathlons, and even raced paddle boards,” Michael O’Leary told Ivanhoe.

Michael has always been an athlete. But just last year, he fell while playing in the U.S. Open Pickle Ball Championships and his new bride noticed other changes.

“It would almost appear like I had been drinking when I really wasn’t,” Michael explained.

His balance, memory, and speech were getting worse. They finally got the devastating diagnosis; Michael had Lewy body dementia.

“We estimate there are approximately 1.3 million Americans who have Lewy body dementia,” James Galvin, MD, MPH, Professor and Associate Dean of Clinical Research at Charles E. Schmidt College of Medicine, Florida Atlantic University told Ivanhoe. (Read Full Interview)

Dr. Galvin says this disease causes neurological symptoms due to a buildup of protein in the brain called Lewy bodies.

“First there has to be a dementia; that is a progressive change in cognitive abilities, slow movement, balance problems, and rigidity or stiffness,” Dr. Galvin explained.

Another hallmark of the disease-patients see things that aren’t really there.

Dr. Galvin continued, “The hallucinations typically are very well formed of either little people or furry animals.”

The scariest symptom has been Michael’s sleep disorder.

“He would jump out of bed, thought somebody was chasing us, he’d run into the sliding glass doors,” Michael’s wife Cindy O’Leary, told Ivanhoe.

Now, for the first time, researchers at Florida Atlantic University are studying a drug that would support memory by increasing chemicals in the brains of LBD patients.

“The more that’s around, the more likely you are to form a new memory,” Dr. Galvin stated.

Michael enrolled in the study and has been fitted for a specialized sports wheelchair so he can continue playing pickle ball.

“I can’t wait to get on the court more,” Michael said.

Michael just had the honor of carrying the American flag at the 2017 U.S. Open Pickle Ball Championships where he was the only wheelchair athlete to compete! Doctors are currently enrolling LBD patients for a sleep disorder study. If interested, patients should contact 800-501-0684.

Contributors to this news report include: Cyndy McGrath, Supervising Producer; Janna Ross, Field Producer; Judy Reich, Videographer; Gabriella Battistiol, Assistant Producer; Roque Correa, Editor.

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REPORT: MB #4279

BACKGROUND: Lewy Body Dementia or LBD affects an estimated 1.4 million individuals in the United States. Lewy bodies are caused by the aggregation of a protein called alpha-synuclein. LBD symptoms can closely resemble other more commonly known diseases like Alzheimer’s and Parkinson’s, therefore LBD is widely underdiagnosed. Many medical professionals still are not familiar with LBD. It is an umbrella term for two related diagnoses, both Parkinson’s disease dementia and dementia with Lewy bodies. The earliest symptoms of these two diseases differ, but reflect the same underlying biological changes in a patient’s brain. Over time, both diagnoses will develop similar physical, sleep, cognitive, and behavioral symptoms. In the early 1900s, the scientist Friederich H. Lewy was researching Parkinson’s disease and discovered abnormal protein deposits that disrupt the brain’s normal functioning. These “Lewy body” proteins are found in an area of the brain stem where they deplete the neurotransmitter dopamine, which causes Parkinson’s-like symptoms. In Lewy body dementia, these abnormal proteins are diffused throughout other areas of the brain, including the cerebral cortex. The brain chemical acetylcholine is depleted, causing disruption of perception, thinking and behavior.
(Source: https://www.lbda.org/category/3437/what-is-lbd.htm)

TREATMENT: Since LBD is a multi-system disease, it typically requires a comprehensive treatment approach, which means a team of physicians across different specialties collaborate with each other and the patient to provide optimal treatment of each symptom without worsening other LBD symptoms. It is important to remember that some people with LBD react negatively or can be extremely sensitive to certain medications that are commonly used to treat Alzheimer’s or Parkinson’s, as well as certain over-the-counter medications. Some symptoms that physicians may look to treat include movement symptoms, visual hallucinations, cognitive symptoms, REM Sleep Behavior Disorder (RBD), and neuroleptic sensitivity. Up to 50% of patients with LBD who are treated with antipsychotic medication can experience severe neuroleptic sensitivity; such as worsening cognition, heavy sedation, increased or possibly irreversible parkinsonism, or symptoms resembling neuroleptic malignant syndrome (NMS), which can be fatal. It is vitally important to keep your physician updated on any side effects you may experience on any medications.

(Source: https://www.lbda.org/content/treatment-options )

NEW TECHNOLOGY: Florida Atlantic University is studying a drug that increases chemicals in the brain of LBD patients. The HEADWAY-DLB is a phase 2B multi-center, double-blind and placebo-controlled study to investigate this drug, called RVT-101. Directed by James E. Galvin, MD, MPH, a professor of clinical biomedical science in FAU’s College of Medicine, a professor in FAU’s Christine E. Lynn College of Nursing, medical director of FAU’s Louis and Anne Green Memory and Wellness Center and an expert on LBD. Diagnosing dementia with Lewy bodies early is critical, and the hopeful end to this study is physicians will be able to assist patients with LBD medication specific to their needs and conditions. Their work combines biomarkers including high density EEG, functional and structural MRI, PET scans and CSF biomarkers to characterize and differentiate LBD from healthy aging and other neurodegenerative diseases.  Patients diagnosed with LBD can enroll in a number of different protocols. If interested, patients should contact 800-501-0684.

(Source: http://www.fau.edu/newsdesk/articles/lbd-trial-galvin.php )




If this story or any other Ivanhoe story has impacted your life or prompted you or someone you know to seek or change treatments, please let us know by contacting Marjorie Bekaert Thomas at mthomas@ivanhoe.com

Doctor Q and A

Read the entire Doctor Q&A for James Galvin, MD, MPH

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