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Experimental drug being tested for Lewy body dementia

Donald Merkel was diagnosed with Lewy body dementia three years ago. He has a continuous hand tremor that has taken away his ability to work on his beloved vintage Corvettes.

But that’s not the only thing the disease has taken from this Pennsylvania man. Merkel’s wife Kay has watched the disorder rob his memory. It also causes hallucinations and can lead to Parkinson’s disease.

“It’s devastating, really,” she told CBS News.

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Don and Kay Merkel. Don has Lewy body dementia and is participating in a new drug trial.

CBS News

Lewy body dementia affects about 1.5 million people in the U.S., making it the second most common type of dementia after Alzheimer’s disease

Actor Robin Williams is said to have suffered with Lewy body dementia before taking his own life in 2014. His widow, Susan Schneider Williams, referred to the disease as “the terrorist inside my husband’s brain.”

Medical researchers are now working on new treatment options for Lewy body dementia, including testing the first drug developed to treat it.

Don Merkel is taking part in a clinical trial of that new medication.

His neurologist, Dr. David Weisman, is optimistic. “I’m really encouraged that a drug company is aware of this disease because it’s been way overlooked in the past, and taking this on I think is an exciting first step,” Weisman said.

The experimental drug is designed to boost neurotransmitters in the brain to improve memory and reduce other symptoms. The drug trial is taking place at 30 sites around the country.

“Hopefully there’ll be a breakthrough, which is wishful thinking, but you never know,” Merkel said.

But while the couple tries to remain positive, they don’t actually know if Merkel is getting the drug or a placebo.

For now, they say they live every day the best they can.

“Maybe if it doesn’t make a difference for us, down the road it would make a difference for somebody else,” Kay Merkel said.

 More information about the study is available at lewybodystudy.com.