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Robin Williams, the actor and comedian was known for his fast-paced, improvisational stand-up comedy and for his dramatic performances in films like in 'Good Will Hunting'' for which he won an Academy Award. On May 28th, 2014, he was diagnosed with Parkinson disease and, according to his wife, he had been experiencing depression, anxiety and paranoia. Williams, committed suicide on August 11, 2014 at the age of 63. It took three months to investigate and his autopsy showed that he had what is known as Lewy Body Dementia (LBD). (2)
“Robin was losing his mind and he was aware of it. Can you imagine the pain he felt as he experienced himself disintegrating?” the actor’s widow, Susan Schneider Williams, wrote in an editorial published September 27, 2016 in the journal Neurology. (1)
Lewy bodies are abnormal aggregations of protein that develop inside nerve cells in the brain, contributing to Parkinson’s LBD (Parkinson's disease dementia and dementia with Lewy bodies), and some other disorders. (11). LBD is the second most common form of dementia after Alzheimer’s disease, affecting an estimated 1.3 million Americans. (8) . LBD symptoms include:
“Depression is probably the most common psychiatric complication,” said Dr. Brent Forester, a geriatric psychiatrist at McLean Hospital in Belmont, Mass. “And it’s most likely directly related to the biological brain changes that occur in patients with the disease.” (6)
Depression caused by the altered brain chemistry can lead people to self-harm. But as Dr. David Knopman, a neurologist at the Mayo Clinic in Minnesota, points out: “Suicide is an extremely uncommon outcome of dementia with Lewy bodies.” (3)
According to Dennis Dickson, the LBDA spokesperson, "...he (Williams) experienced depression, anxiety, and paranoia, which may occur in either Parkinson's disease or dementia with Lewy bodies," adding that, in Parkinson's, "Lewy bodies are generally limited in distribution, but in Diffuse Lewy Bodies, the Lewy bodies are spread widely throughout the brain, as was the case with Robin Williams.” (7)
Doctors recognized LBD as a distinct disease about 20 years ago and it remains something of a mystery. Funding for LBD research dramatically lags behind funding for other cognitive diseases. (4) Last year, the National Institute of Health (NIH) spent $140 million on research for Parkinson’s disease, almost $600 million on Alzheimer’s and $39 million on LBD. (9)
The Alzheimer’s Association recognize the link between the diseases and have used some of the funding they receive to further an understanding of Lewy Body and its symptoms.
“Right now, the Alzheimer’s Association is funding 500 active projects in 27 countries throughout the world with about $167,000,000.00 in current funding for research for Alzheimer's primarily and some is for Parkinson's dementia and other dementias (including Lewy Body),” according to Randy Lerner the Manager, Marketing and Communications of the Alzheimer’s Association – Greater NJ Chapter.
In Parkinson’s disease, abnormal protein clumps in lower parts of the brain, causing tremors, rigidity, and other problems of motor control. Dementia may come later if the Lewy bodies spread. By comparison, Lewy body dementia starts with protein clumps in the cerebral cortex, (the brain’s biggest region) causing problems with cognition.
What can be done to treat Lewy Body and its symptoms?
The Lewy Body Dementia Association (LBDFA) website https://www.lbda.org/go/treatment-0 states the following:
Cognitive Symptoms
Medications called cholinesterase inhibitors are considered the standard treatment for cognitive symptoms in LBD. These medications were developed to treat Alzheimer’s disease. However, some researchers believe that people with LBD may be even more responsive to these types of medications than those with Alzheimer’s.
Movement Symptoms
Movement symptoms may be treated with a Parkinson’s medication called levodopa, but if the symptoms are mild, it may be best to not treat them in order to avoid potential medication side-effects.
Hallucinations
Some newer antipsychotic medication are being prescribed to treat hallucinations.
Sleep Disorders
Usually treated with melatonin and/or clonazepam.
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