Lewy body dementia is a fairly common disorder, but its symptoms are similar to Alzheimer's and Parkinson's disease, making it difficult to diagnose correctly.
Often doctors aren't familiar enough with Lewy body or don't even know what it is. That was the case with Carol O'Rourke, whose husband died after being diagnosed with Lewy body dementia in May 2016.
It was a learning experience in every way she could imagine
"To me, it's a combination of Alzheimer’s, dementia, bipolar, schizophrenia, aggression, anxiety, paranoia, hallucinations; I had them all, really heartbreaking as a caregiver, isolating, lonely," said O'Rourke.
Knowing the hallmark symptoms of Lewy body will help to expedite a diagnosis. Currently, there's no known cause for Lewy body dementia, no known cure, and no FDA approved medications to treat the disease.
O'Rourke took care of her husband by herself for the most part 24/7 until he died. She sometimes even feared that her husband, because of the disease, might harm her.
"One minute he could be fine. The next minute he would be off the wall," said O'Rourke.
Now O'Rourke's spreading the word to help others who might be going through what she did and advises those affected to not only be a good advocate for your loved one but to study up, learn everything there is to know about the disease and find a caregiver support group to help get you through.
"They understood what I was going through. They almost kind of like adopted me. It's like the person that needs a little extra care because she's going through hell," said O'Rourke.