The thing about Lewy is that it’s still such a mystery. Not only a mystery, it’s a mystery few have heard of before. When Mom was diagnosed with Lewy Body Dementia (LBD) we had never heard of it. I had to do a Google search to find out anything about it and I have been around the healthcare field for a long time. If I hadn’t heard of it considering my background, you can imagine what it is like when people ask what condition my Mom had.
“She had what?” “Lewy whatcha call it?” “Huh?” The comments are usually accompanied by confused looks. Mom had symptoms that got progressively worse over the course of about ten years. In the early stages the doctors had many theories, but no answers. It was hard because people would ask about it and I longed to be able to give a simple answer that others understood. When you say someone has Alzheimer’s people nod and are sympathetic. Not so with Lewy.
So, after the shock wore off I began to talk about it. I had been doing research about LBD and began to believe that more people are afflicted with it than the 1.5 million the Lewy Body Dementia Association currently has statistics to support. Why do I believe that? LBD’s three main symptoms are hallucinations, fluctuating cognition, and Parkinson’s type symptoms. There is a lot of overlap between Alzheimer’s, Parkinson’s and LBD. The other two are much better known and so those are often considered first. Knowing that Mom was originally considered to have Alzheimer’s and having talked with other care givers whose loved ones have been diagnosed with Alzheimer’s or Parkinson’s, I think there are people out there with one of these diagnoses that just doesn’t quite fit.
If LBD is similar to these, why do we care about distinguishing it? One reason for this is because LBD patients are more susceptible to a class of drugs called neuroleptics. These drugs are often used to help treat hallucinations. In LBD they can cause coma and even death. I have also found that care givers want to know that someone understands their loved one. Being able to talk about it with others who understand is part of the healing process. It is hard when there is so much mystery surrounding the disease.
Recently I had the opportunity to travel to a meeting with the new medical director at the company where I work. He is a neonatologist and pediatrician by trade. He hasn’t had to be up on the diseases that afflict the elderly. I talked with him about my Mom and answered his questions about LBD. Today in a meeting he turned to me and said, “You know since we had that conversation I was talking with a friend whose wife (or mother, I can’t remember) has Lewy.” He laughingly told me that because of the conversation he at least sounded intelligent while talking about it. In one simple conversation I raised his awareness of LBD. That is why I talk about Lewy.
So, I do talk about LBD when I get a chance. I write about it. I am doing my small part to bring light to the disease for all those people who are out there dealing with it. I am only one, but sometimes one is enough.