This is one of an occasional series of opinion columns on Lewy body disease, other dementias, and end of life issues written by a writer who happens to have the brain degenerative disease. A previous version of this appeared on AL.com.
As I’ve pointed out before, we live in a world where Lewy body disease is virtually unknown. That’s not good for the more than a million folks that have the second leading cause of dementia after Alzheimer’s.
That’s not good for the uncounted others who have it but don’t know they have it, either because the doctor didn’t make the diagnosis, missed the diagnosis, or the individual is passing off early stages of the disease as something else.
“It is shocking how few doctors, even neurologists, recognize this condition,” said Dr. Samantha Holden, assistant professor of Neurology at the University of Colorado School of Medicine. “Alzheimer’s gets most of the attention, even in the research community, and DLB is relegated to the category of “Related Dementias”, which is unacceptable.”
Holden is also the co-principal investigator in the Lewy Body Dementia & Neurology Center of Excellence at the university.
Like me, Holden has been scratching her head over LBD’s anonymity. Part of it, we both agree is the complicated nature of the disease itself and its wide ranging symptoms, which leads to an alphabet soup of disorder names.
Holden says this chart is a great way to start understanding.
As you can see by the chart the broad category is Lewy body disease. That’s describing a brain disorder that creates the proteins believed to be the culprit of damage through brain cell loss. That includes Parkinson’s and Lewy body dementia. (Guess which one people have actually heard of.)
Both Parkinson’s and Lewy body, as you can see, are sisters under Lewy body disease.
Alzheimer’s is not on this particular chart because it is not a Lewy body brain malfunction. With Lewy body disease, the proliferation of a protein, which when clumped together are called Lewy bodies. They are named after their founder, Dr. Friederich Lewy, a German neurologist.
And please understand I am not an expert in the science by any means.
What’s in a Name
So to recap and offer questions I have for further exploring.
Lewy Body Dementia (LBD) is an umbrella term taking in both Parkinson’s Disease with Dementia (PDD) and Dementia with Lewy Body (LDB). Are the proteins the killer here or are they just what have been left at the crime scene and another unperceived entity is the triggerman?
Alzeimer’s does not fall under that LBD spectrum because it is a different type of malfunction in the brain. However, sometimes people get both — (Really? As if we don’t have enough to worry about.) What is the relationship between Alzheimer’s and Lewy body? If any?
I know this is confusing. But in many cases whether you have LBD or whether it’s PDD, eventually you will see the same (bad symptoms), physical impairment and cognitive impairment. Although some diagnosed Parkinson’s may never get dementia, correct?
That’s because every Lewy is his own person and afflicts different folks in different ways. Which leaves wide paths for optimism that the symptoms may be slow and mild. That’s the hope for those with the disease but, of course, those hopes can also be dashed.
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