TAMPA (FOX 13) - Sylvia Rhodes is fighting an invisible battle within her head. "I saw people in my home that weren't there," she recalled. "I saw my mother and my dad in my bedroom and they were behind the wall in a tree."
These are some of the hallucinations she has experienced since she was diagnosed with Lewy Body Dementia, LBD for short.
In LBD, clumps of abnormal brain proteins make it hard for people like Sylvia to think and move. She says she has to deal with bad tremors every morning. It took years for doctors to figure out what was wrong because LBD mimics diseases like Alzheimer's and Parkinson's.
Her husband Allen is also her full-time caregiver. "Sylvia does no cooking, she gets very confused in the kitchen and she's gotten confused financially with accounts. It doesn't seem to get any better. It’s kind of like a downhill slide."
Neurologist Dr. Susan Steen says LBD is a difficult disease to diagnosis. Actor Robin Williams was misdiagnosed with Parkinson's until his autopsy showed the real problem.
Dr. Steen says Williams isn't alone. Almost one and a half million Americans may have LBD. She is now helping test a drug called Intepirdine that may help symptoms.
"This is really exciting that someone has chosen this disease and is actively looking at a drug that will hopefully improve the symptoms," Steen offered.
Intepirdine boosts chemical signals in the brain, helping nerve cells to talk to each other. But by partially blocking another chemical called serotonin, it may also help with hallucinations.
“We know that by stimulating some serotonin receptors, it can cause hallucination. So by blocking this receptor it may be helpful," she explained.
It’s too soon to know if it works, but Allen sees changes in Sylvia. "She's not had the hallucinations as much since we dealt with it the last time."
The trial is still enrolling patients. Anyone interested in more information about dementia studies can call Axiom Clinical Research of Florida. The number is 813-353-9613, ext. 329.