Understanding how Lewy Body Dementia affected Robin Williams

Photomicrograph of regions of substantia nigra in a Parkinson's patient showing Lewy bodies and Lewy neurites in various magnifications. Top panels show a 60-times magnification of the alpha synuclein intraneuronal inclusions aggregated to form Lewy bodies. The bottom panels are 20 ◊ magnification images that show strand-like Lewy neurites and rounded Lewy bodies of various sizes. Neuromelanin laden cells of the substantia nigra are visible in the background. Stains used: mouse monoclonal alpha-synuclein antibody; counterstained with Mayer's haematoxylin.
Photomicrograph of regions of substantia nigra in a Parkinson's patient showing Lewy bodies and Lewy neurites in various magnifications. Top panels show a 60-times magnification of the alpha synuclein intraneuronal inclusions aggregated to form Lewy bodies. The bottom panels are 20 ◊ magnification images that show strand-like Lewy neurites and rounded Lewy bodies of various sizes. Neuromelanin laden cells of the substantia nigra are visible in the background. Stains used: mouse monoclonal alpha-synuclein antibody; counterstained with Mayer's haematoxylin.

WASHINGTON, November 12, 2014 — Casey Kasem’s death from Lewy body dementia (LBD) first introduced millions to the horrific disease, a progressive, degenerative dementia that affects primarily older adults.

READ ALSO: The voice that defined America’s rock music, Casey Kasem dies at age 82

The disease can cause a sharp, marked and a fast decline in a person’s mental abilities. LBD is the second most common dementia after Alzheimer’s.

Following Robin Williams’ death, it was brought out that he suffered from depression, bi-polar disorder and Parkinson’s disease. Autopsy shows that he also had LBD. The pathologist’s report confirmed “Diffuse Lewy body dementia,” meaning that abnormal LBD proteins were diffused throughout his brain, including the cerebral cortex.

LBD is a multi-system disease, requiring a difficult and comprehensive treatment approach. Treatments for diseases such as Alzheimer’s and Parkinson’s may control the cognitive and physical effects of the disease, though the medications can also increase the patient’s discomfort.

“Patients with Lewy body disease can hallucinate on their own, but give them a Parkinson’s drug and it can make hallucinations worse,” says Gayatri Devi, an attending neurologist at Lenox Hill Hospital in New York whose specialty is memory disorders. “And drugs used to treat Lewy body hallucinations can cause symptoms of Parkinson’s.”

READ ALSO: Robin Williams – the diagnosis of bi-polar disorder

Sources close to Williams’ family have told TMZ that LBD was the “key factor” that drove the beloved comedian to kill himself, a statement that Williams’ doctors reportedly agree with.

Early symptoms of LBD include REM sleep disorders with dreams, excessive movements, even falling out of bed. The REM sleep abnormalities are detectable with PET or SPECT scans.

These are among the reasons that wife Susan Schneider says Robin Williams took to sleeping in his stepson’s bedroom, where he eventually killed himself.

The cognitive decline of LBD leads to hallucinations and a decline in attention and alertness. The person with LBD will find it difficult to plan simple tasks, and lose the ability to perform analytical or abstract thought processes.

LBD also affects:

  • Wakefulness – the ability to stay alert varies from day to day, sometimes from hour to hour. Sufferers may find themselves fighting daytime drowsiness or the inability to maintain alertness.
  • Short Term Memory will fluctuate. Recalling things that happened in the morning, or previous day can become difficult.
  • Hallucinations that include vivid images occur in 75 percent of people with LBD and most often center around people or animals important to the sufferer, but who are not present, or may have even died.
  • Inability to control or regulate body functions leading to problems with blood pressure, pulse rate, sweating and digestion that can lead to dizziness, falling and bowel control.
  • Changes in the person’s sense of touch.

Lewy Body also leads to depression, or grossly increased depression in those previously diagnosed such as Robin Williams. People with LBD will often experience heightened emotions including confusion, frustration, anger, fear, grief and depression.

The disease can also increase negative feelings of uncertainty.

As in the case of both Casey Kasem and Robin Williams, LBD was first diagnosed as Parkinson’s disease, which is common in the early years of the disease.

But what causes LBD? LBD affects 1.3 million people in the U.S. The disease is the result of Lewy bodies that develop in the brain’s neurons. The Lewy bodies share a protein with Parkinson’s disease, and those with Lewy bodies also have the plaques and nerve tangles that are seen in the brains of those with Alzheimer’s.

READ ALSO: Robin Williams’s death due to depression: Depressed men greater suicide risk

Conversely, many of those suffering from Parkinson’s and Alzheimer’s also show the presence of Lewy bodies. A diagnosis of LBD is often as a result of the patient not responding to treatments for Parkinson’s or Alzheimer’s, and then from the way the disease progresses.

According to Wikipedia, loss of cholinergic (acetylcholine-producing) neurons leading to the degeneration of cognitive function manifests itself in symptoms that are often misdiagnosed as the onset of Alzheimer’s. Dopaminergic (dopamine-producing) neurons die off, creating Parkinson’s-like loss of motor control.

What sets LBD apart from Alzheimer’s and Parkinson’s is the disease’s rapid onset and the quick decline of the person afflicted. This makes quick diagnosis and treatment of symptoms essential.

Lewey Bar Disease is diagnosed when cognitive degeneration — the ability to be alert, think, plan, analyze, remember — is noted within the same time frame as the physical symptoms most often associated with Parkinson’s.

Those most at risk for LBD include people over 60; like Parkinson’s, LBD affects men more often than women, and there seems to be a family heredity risk.

Death from LBD is most often within eight years of the onset of the disease.

The Lewy Body Dementia Association has issued a statement regarding whether Williams was displaying any dementia at the time of his death. According to the group, he probably did not.

“The autopsy indicated the presence of ‘diffuse Lewy body dementia’ in the brain of Mr. Williams. This is more commonly called ‘diffuse Lewy body disease’ which reflects the biological disease process in the brain.

“The use of the term dementia in the neuropathology report should not be inferred to mean that dementia was observed during life,” warns Dennis Dickson, M.D., Mayo Clinic in Jacksonville, Fla. and member of the LBDA Scientific Advisory Council.

Lewy bodies are misfolded protein deposits found in the brains of individuals with several different disorders including Parkinson’s disease (PD) and dementia with Lewy bodies (DLB)

According to his wife, Williams was battling “the early stages of Parkinson’s disease” before his death. In early PD, Lewy bodies are generally limited in distribution, but in LBD, the Lewy bodies are spread widely throughout the brain, as was the case with Williams.

Dr. Dickson, who has reviewed the autopsy and coroner’s report, further states,

“Mr. Williams was given a clinical diagnosis of PD and treated for motor symptoms. The report confirms he experienced depression, anxiety and paranoia, which may occur in either Parkinson’s disease or dementia with Lewy bodies.”

Dr. Sanjay Gupta explains the disease for CNN explaining that Lewy body dementia is a diagnosis of exclusion that can only be confirmed on autopsy.

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  • Jim

    My Mother was afflicted by and died of LBD. It is a horrible, debilitating disease. I have told my wife that, if I ever get it, I do not wish to live. Luckily for him, Robin Williams understood what was going on and did what he had to do. We should respect him and his courage to choose to die before he was deprived of any quality of life. RIP.

    • Jim — I am so sorry for your mother’s struggle and pain, and your loss. It is hard to believe there is something worse than Alzheimer’s and dementia. And while I am saddened by Williams choice, I surely understand it and would, most likely do the same faced with the same outcome. Though I think I would have chose a gentler exit.

    • “Us and Them”

      I agree with you which is why the law should allow for one to die comfortably.

  • Andrew Unger

    A well-written, topical and informative article. As a physician, I was surprised by the depth of content being presented. And that content was presented in such a way that an intelligent lay person would, likely, understand it!

    Hard to do. I might have to visit this site on purpose, the next time.

  • Deana Bossio

    Symptoms are the body’s way of saying that what you’re doing and not doing isn’t working. Giving the symptoms a name is somewhat useless. Mental health symptoms are no different. When is mental health going to get out of the dark ages and be honest that mental health symptoms are from nutrient deficiencies, lack of water, lack of fresh air, sunshine and exercise. Food, quality and quantity, sensitivities, directly affect mood. The mental health and healthcare systems are broken. Only when we truly recognize the systems are broken and killing people everyday will we change the systems. Medications are nothing more than chemicals in a pill or capsule form and they alter and work against the body and mind. Lord help us.

    • Mavelous63

      I respect your opinion….however,the healthiest of lifestyles will not cure schizophrenia or other mental diseases

  • Mavelous63

    Better take off your tinfoil hat then….

    • Devon_Nullman

      Skijo – So you are saying that traditional medicine knows that Hg is the prevalent cause of neurological disorders and is somehow hiding this from the public ? What should be done ? Chelation ? DMSA ? DMPS ?

      • Skijo

        I don’t know that they are hiding it as much as just making a point of keeping physicians and dentists in the dark. Research on this subject is extensive and well-known in Europe. Find a dentist who understands the safe protocol for removing mercury fillings, and get them out. Imperative to have a dentist educated in doing it properly, or it can be very dangerous is more is released in the body by careless removal. Having someone trained in chelation guide you is imperative. There are numerous things that will nicely remove it from your body tissues and cells, but it takes DMSA to get by the blood brain barrier to remove it there. I have heard there is another substance that can be used that was just discovered. While chelating, it is imperative to take plenty of vitamins and essential minerals, which will be lost during chelation. About the foremost expert on this topic is Hal Huggins, MD.

    • Skijo

      I love posters like yourself who are so intellectual and have research to back up their brilliant statements.

      • Mavelous63

        My pleasure.

  • thebarejew

    A while back there was a superb TV series called Boss starring Kelsey Grammar as the mayor of Chicago. Grammar’s character was diagnosed with LBD and experienced the rapid decline described here. The symptoms, treatment challenges and etiology of the disease, I now realize, were explained and depicted with painstaking accuracy. I now understand why Williams took his own life.