Robin williams
(CNN) -
Alzheimer's disease and dementia are two diseases that many Americans are very familiar with, but there is another dementia that plagued the late comedian Robin Williams.
It could be "the most common disease you've never heard of," said Dr. James Galvin, professor of neurology and director of the Lewy Body Dementia Research Center of Excellence at the University's Miller School of Medicine. of Miami.
Williams had Lewy body dementia (LBD), something her family only learned about after her death.
It is often misdiagnosed as Alzheimer's or Parkinson's disease due to its initial similarity to those other neurodegenerative diseases.
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That unfortunate misconception is one of the focuses of "Robin's Wish," a documentary that opens Sept. 1 about Williams' last days, before he died by suicide in 2014.
Affecting about 1.4 million Americans, Lewy body dementias, which include Lewy body dementia and Parkinson's disease dementia, are the second most common form of dementia after Alzheimer's disease, according to the Lewy Body Dementia Association.
Dementia is a disorder of mental processes characterized by memory disorders, personality changes, and impaired reasoning due to brain disease or injury.
Lewy body dementia is associated with the accumulation of a protein called alpha-synuclein that "accumulates and is deposited within cells and some classic areas of the brain," said Dr. Ford Vox, medical director of the Disorders Program. of the Shepherd's Consciousness.
Center in Atlanta and contributor to CNN.
The dementia of Parkinson's disease, the other dementia with Lewy bodies, begins as a movement disorder but progresses to include dementia and changes in mood and behavior.
When working properly, alpha-synuclein, which is generally present in the brain and in small amounts in the heart, muscles, and other tissues, could play a role in regulating neurotransmitters.
But when this protein aggregates and forms masses (called Lewy bodies) within the brain, the consequences are dire.
The most common symptoms of LBD include thinking problems, fluctuations in attention, problems with movement, visual hallucinations, sleep disorders, behavior and mood problems, and changes in body functions, such as the ability to control urination.
Over time, people with LBD lose "layer after layer of ... that life they have built," said Angela Taylor, senior director of research and advocacy for the Lewy Body Dementia Association.
That's what happened to Williams, who was diagnosed with Parkinson's disease in 2013. It wasn't until her autopsy that her widow, Susan Schneider Williams, learned that she actually had LBD.
The documentary highlights how the disease devastated Williams' health.
"My husband had unknowingly been bottling a deadly disease," Schneider Williams said in the trailer for the documentary.
'Almost every region of his brain was attacked.
He experienced its disintegration.
CNN founder Ted Turner is also battling the disease, as he revealed in a 2018 interview.
Experiences of dysfunction and ambiguity are common to many patients and their families.
This is what the disease really is, why it is difficult to identify, and how it damages people's lives.
An elusive and insidious disease
The first published cases of Lewy body dementia occurred in the mid-1960s, but it took medical researchers two decades to recognize the disorder.
"In the 1980s, as molecular understanding of Alzheimer's improved, it became clear that many of these people did not seem to fit that (diagnosis)," Galvin said.
For example, LBD patients had visual hallucinations when the majority of Alzheimer's patients did not.
They also had more parkinsonism (the signs and symptoms of Parkinson's disease, which include sluggishness, stiffness, tremors, and imbalance) than Alzheimer's patients.
"It wasn't until the mid-1990s that a large group of people (the Lewy Body Dementia Consortium) got together and coined the phrase 'Lewy body dementia' and started writing diagnostic criteria that could be applied." , Galvin added.
"And that really changed the game because once you have criteria, people can start to rank higher."
Robin williams
