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Thursday, November 5, 2015

The Plague of Dementia Hit Robin Williams Too - What is Lewy Body Dementia ?

An underlying brain disease may have been the cause of his depression.


This past Tuesday morning as I always do, I sat enjoying my coffee watching the morning news when an interview took by breath away. The interview was with Susan Williams, the wife of the amazing actor and comedian Robin Williams. I sat silent, tears in my eyes as she spoke for the first time about the death of her husband. The heart wrenching interview struck quite a nerve for this caregiver when she revealed that Robin's autopsy showed he was suffering from Lewy Body Dementia or LBD for short. As a caregiver I have seen many people suffering from dementia - to many! LBD is the second most common form of dementia next to Alzheimer's. It is estimated that 1 million Americans suffer from LBD. 

Susan spoke about Robin's sudden rash of symptoms that started popping up about a year prior to his death. She said he complained about things like severe pain in his gut, sleeplessness and constipation. She even thought he might be a hypochondriac. But then he was diagnosed with  Parkinson's disease in May 2014.
This diagnosis seemed to answer some questions but, there was more going on that only Robin knew, things were not right in his head. When a person has LBD, normal proteins in the brain begin to form clumps and these clumps called Lewy Bodies begin to interfere with normal brain function. They begin to effect things like memory, vision, attention span and can cause the person to suffer confusion, even halucinations.
"LBD is a complex disease to diagnose because so many of it symptoms can possibly be Alzheimer’s disease or Parkinson’s disease. However, the condition is not rare; more than one million Americans have LBD, according to the National Institute of Health’s National Institute on Aging, and most of them are over 50 years old." - Huffington Post
Robin was a brilliant man, one who could make you laugh till you peed your pants or cry in the middle of a crowded  movie theater, and he knew something was wrong. He obviously knew something else was going on. The symptoms he was experiencing were making the life he loved no longer possible for him to live. One can only imagine when  the brain starts to malfunction, and you are still aware enough to know what is going on, how frightening it must be.

A year ago in California where Robin was living, assisted suicide was not legal as it is today. Had it been, there may have been a gentler way that Robin could have chosen to end his life. On his terms. Instead he ended his life by hanging himself with his belt. Was this the cowards way out? This caregiver says no, by all means no. Robin was well aware of dementia as all of us are and although he didn't know what he had at the time, there is a good chance this brilliant man knew that something was happening. He no doubt did not want his family to have to suffer the painful years of seeing him decline until he could no longer care for himself. Instead he wanted to end his life on his terms and for that I applaud him. He lived a wonderful life, brought joy to millions and will never be forgotten by this fan. 

The revelation by Susan that Robin had dementia will help shed even more light on this ever growing problem.  The signs and symptoms she shared should be signs we as caregivers can look for, and not gloss over, when our patients express them. There is still so much we do not know about the workings of the mind and how dementia, in it's many forms, affects people. But one thing we do know the fight is far from over. 

Susan - may you find comfort in knowing that Robin's last act was an act of love for you and his children. He gave the ultimate sacrifice to spare you.

Until Next Time
Take Care
Ruth Anne 


For additional information about Robin Willams, Susan Williams and LBD you can view this article on the Huffington Post website which includes a link to the Susan Williams interview with People Magazine:

What You Should Know About Robin Williams' Lewy Body Dementia

Will Branning

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Please leave your comment, and Thank You.. Ruth Anne.