Robin Williams was a comic genius. He was also a victim of Lewy Body Dementia or LBD. His initial symptoms were much like Parkinson’s, but after his death an examination of his brain tissue showed the presence of diffuse Lewy Body Dementia. LBD is not rare and affects close to 1.4 million people and their relatives in the U.S.
It resembles illnesses like Alzheimer’s and Parkinson’s.
Retired Brownsburg high school teacher John Shiffer has Lewy Body Dementia, which as affected his ability to speak.
“The loss of being able to communicate is hindered by the fact that I get talking [and] it all runs together on me,” says Shiffer.
Lewy Bodies are clumps of protein that can form in the brain. When they build up, they can cause problems with the way your brain works, including your memory, movement, thinking skills, mood, and behavior. These problems can keep you from doing everyday tasks.
It’s the second-most common form of dementia, behind Alzheimer’s.
Shiffer’s wife remembers getting her husband’s diagnosis. They were on a vacation in Florida, and John began to hallucinate.
“He had no idea who I was. He had no idea where we were. He thought we were in Texas on the way to Florida. It totally threw me off. It was the worst he had been as far as being out of touch,” says Helen Shiffer.
She took her husband to a hospital in Sarasota and a physician confirmed that he had more than Parkinson’s. As soon as Helen and John returned to Indiana, she was referred to the IU Medical Center, where John was enrolled in a clinical trial of two medications which, if approved, could be used to treat some of the symptoms of Lewy Body.
Dr. Jared Brosch is a neurologist at the medical school and heads up the trial locally.
“The FDA has designated this as a fast track trial. In other words, if we are able to demonstrate these drugs have a positive effect,” says Brosch, “then they may not require additional data to approve the drugs.”
The drugs are Intepirdine, which may slow the progression of Lewy Bodies. Nelotanserin is designed to affect sleep disorders. John doesn’t know if he’s taking any of the drugs or none at all. It is a double blind study. His wife hopes something good will come of his participation, even if he’s not cured.
“I figure if it’s good and it’s going to help him, that’s wonderful. And if it’s good and going to help other people down the road, that’s better yet," she said.
IU is one of 40 sites globally involved in the clinical trials. For more information, call (212) 845-4271. You can also find more information on Lewy Bodies on the CDC website by clicking here.