What is Lewy Body Dementia?

Lewy Body Dementia is caused by the attachments of protein clusters to the nerve cells in a person's brain.

Alzheimer’s disease is a fatal form of dementia that takes the lives of approximately five million Americans every year. The Alzheimer’s Association predicts that by 2050 the number of deaths from Alzheimer’s will reach fourteen million annually.

The dementia most people have never heard of is Lewy Body Dementia. It is related to protein deposits on the nerve cells in the brain. It is the dementia that I have. It’s related to Parkinson’s disease and doctor’s have a hard time telling the difference between the two. The “clumps of protein” damage the brain cell neurons and it affects all of us in different ways. Because Lewy Body has symptoms so similar to Alzheimer’s, diagnosis often falls into the Alzheimer’s category. They find out in the autopsy it was actually Lewy Bodies that killed the patient. That’s why Lewy Body is often called the dementia we’ve never heard of.

Lewy Body causes cognitive fluctuations where my concentration comes and goes. Concentration is unpredictable along with levels of alertness and attention span. The changes can happen from day to day or even more than one change during a day.

Fluctuations can make it feel like I am improving for periods of time. Recently I felt like I was cured. It fooled me and right now I never know which it will be. The other thing is there are times when planning or reasoning is too hard for me and I am lucky to have a wife that knows me so well she fills in the gaps for me.

Most people think of memory loss when they hear the word dementia. In Lewy Body Dementia the memory loss comes late in the disease. There are days when we forget what day it is or what time it is. Also, and this happens to me, I forget where I am. That is not the memory loss I mentioned earlier. These kinds of losses come and go. In the end it’s total memory loss.

The disease can start 25-30 years before classic symptoms begin to show. Small things start to happen in personality, mood, judgment, and slowing coordination. The changes are very slow and the changes are small. For instance, I left a very good management job in 1997 because I convinced myself I was unhappy in the job. I still wonder why I did that! I went from that job in 1997 to homeless in 2009 but still felt like I was in control.

In between those times I hurt many people, stole things, and destroyed relationships. I spent seventeen years in the mental health system because what seemed real to me wasn’t the way things really were. That all happened before I decided things were worse than what I was being told. It was all part of the early disease growth period.

I can’t concentrate very long so my posts will be short and sweet. My next post will be about the symptoms that started early and how it’s progressed.