Local doctor leading key drug study to treat Lewy body dementia


A Fountain Valley doctor is leading the first study of a drug that could eliminate the hallucinations that plague certain dementia patients.

Daniel Truong, a neurologist specializing in Parkinson’s disease, has hope that the new drug, called nelotanserin, will help eliminate the illusions that people with Lewy body dementia experience.

LBD, the most common form of dementia after Alzheimer’s, was brought to the public’s attention after comedian Robin Williams’ wife, Susan Schneider, said her husband had been struggling with the illness in the months before his suicide in 2014.


According to the Lewy Body Dementia Assn., LBD affects an estimated 1.4 million people and their families in the U.S. but goes underdiagnosed because symptoms can closely resemble Alzheimer’s and Parkinson’s diseases.

Truong said this is why the disease was unknown for so many years.

Symptoms have to be tracked for at least a year before an LBD diagnosis can be made, according to the association.

Furthermore, Truong said there is “nearly nothing” available to treat the disease.

The study, which commenced about two months ago, is backed by Axovant Sciences, a Bermuda-based, clinical-stage biopharmaceutical company that focuses on dementia and related neurological disorders.

The study is also being conducted in Florida, Nebraska, Ohio and North Carolina. Truong’s Fountain Valley site is the only West Coast research center involved. The results will be combined and analyzed.

Truong had been working in the field of Parkinson’s for about 20 years when he started to focus his attention on LBD.

He began noticing that some patients reported seeing things that he could only qualify as hallucinations. The doctor said people with LBD may mistakenly see a child when what they are actually viewing is a flower pot or see an armchair transform into a snake.

Many of the hallucinations seem to occur in the dark but disappear in the light, he said.

Truong said he often wonders if the centuries-old stories about Dracula sightings — people catching a brief glimpse of a haunting figure before it vanishes in the light — were visions influenced by LBD.

“It’s not scientific,” he said. “But I wonder.”

Truong believes nelotanserin could be the answer to the hallucinatory woes of the LBD sufferer. The medicine acts on the same receptors in the brain that cause hallucinations, he said.

Michael Wexler, who has met with Truong and plans to enroll in the study, was diagnosed with Parkinson’s about four years ago and then LBD after about another year. This is often the progression of the disease, Truong said.

Wexler said he experiences confusion, lacks concentration and notices declining motor skills along with hallucinations.

Wexler said he has awakened to what he thought were snakes in his bed before realizing he was hallucinating.

“To me, they seem real,” he said, pointing out that the images can be frightening.

Wexler has taken a few medications over the years but said nothing has worked well enough. He hopes that nelotanserin will be his miracle drug.

“It would be huge if the drug worked,” Wexler said. “It would change my life and give me hope that good things are about to happen.”

Truong is still actively recruiting more patients for the study, which he hopes to wrap up within four months.

Anyone interested in participating can contact Truong at (714) 378-5062.

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