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Lewy Body Journal: Our Family's Experience with Lewy Body Disease
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What Lewy Body Disease Is

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Lewy body disease is a kind of dementia

Lewy body disease is a kind of dementia. Dementia is a general decline in cognitive abilities (thinking, memory, language, etc.) usually due to degeneration of the brain. There are many kinds of dementia. The most common and best known kind is Alzheimer's disease. Lewy body disease is thought to be the second most common kind of dementia. It causes cognitive problems similar to those seen in Alzheimer's disease and motor problems like those in Parkinson's. Like Alzheimer's disease, Lewy body disease is currently incurable and it gets worse with time. It should be noted that there are some kinds of dementia (for example, those caused by a thyroid problem or a deficiency in vitamin B-12) that can be reversed. That's why it's important to have a full work-up done when dementia is suspected.

Lewy body disease is also referred to as dementia with Lewy bodies, Lewy body dementia, diffuse Lewy body disease, senile dementia of Lewy body type, and Lewy body variant of Alzheimer's disease.

Despite its prevalence, Lewy body disease is not well known. Every year, it seems that Newsweek and other popular magazines run a feature article on the progress made against Alzheimer's disease, and any new information about Alzheimer's is big news. In these articles there's never a mention of Lewy body disease. In our experience many health professionals (physical therapists, nurses, and even some doctors) aren't well informed about Lewy body disease.

What are Lewy bodies?

In 1912, while Frederick Lewy was examining the brains of people with Parkinson's disease, he discovered irregularities in the cells in the mid-brain region. These abnormal structures (microscopic protein deposits found in deteriorating nerve cells) became known as Lewy bodies. Since that time, the presence of Lewy bodies in the mid-brain has been recognized as a hallmark of Parkinson's disease. In the 1960s, researchers found Lewy bodies in the cortex (the outer layer of gray matter) of the brains of some people who had dementia. Lewy bodies in the cortex are known as cortical Lewy bodies or diffuse Lewy bodies. (That's why Lewy body disease is sometimes called cortical Lewy body disease or diffuse Lewy body disease.) Cortical Lewy bodies were thought to be rare, until the 1980s when improved methodologies showed that Lewy body disease was more common than previously realized.

People with Lewy body disease have Lewy bodies in the mid-brain region (like those with Parkinson's disease) and in the cortex of the brain. It's believed that they usually also have the "plaques and tangles" of the brain that characterize Alzheimer's disease. Conversely, it's believed that many people with Alzheimer's disease also have cortical Lewy bodies. Because of the overlap, it's likely that many people with Lewy body disease are misdiagnosed (at least initially) as having either Parkinson's disease or Alzheimer's disease. A big factor in the misdiagnosis might be that Lewy body disease is relatively unknown.

Symptoms of Lewy body disease

People with Lewy body disease have cognitive problems (problems with thinking, memory, language, etc.) similar to those that occur in Alzheimer's disease. Therefore, it can be hard to distinguish the two. Some doctors think there are three distinguishing features and the presence of two of them makes the diagnosis of Lewy body disease probable:

It's possible that people with Lewy body disease are better able to form new memories than those with Alzheimer's disease. Compared with Alzheimer's, Lewy body disease may affect speed of thinking, attention and concentration, and visual-spatial abilities more severely than memory and language. Depression may be a typical symptom too.

Treatment

Right now, doctors prescribe drugs to treat four major features found in Lewy body disease (also see the medication section of our Information page):

Why do some people get Lewy body disease?

No one knows.

For more information

To learn more, check out Links.

 
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