Remembering Robin Williams and Starting a Conversation About Lewy Body Disease

On August 11, 2014 a brilliant, funny, joyful, compassionate and, simply put, a truly good man, who was known the world over was lost to us.  On August 11, 2014 the world lost Robin Williams to suicide.  The world became irreparably darker on that day because the brightest light among us had been extinguished far too soon. And while I never had the chance to meet Robin Williams in person, for me, he always felt like he was part of my family. His loss was personal.  The reality of it gutted me and at the same time it is still something I am not entirely willing to accept.

Robin's work was something that, no matter what was going on in my life, I could always go to in order to get me through. When I needed to laugh, there was Aladdin, Mrs. Doubtfire, Good Morning, Vietnam, or The Birdcage.  When I needed to be inspired, there was Good Will Hunting, Dead Poets Society, Patch Adams, Awakenings or Jack.  When I needed to cry (because we all need to cry now and then), there was What Dreams May Come.  And when I just needed to watch my all time favorite movie, there was The Fisher King.  These movies, his work, helped me through dark days.  Truth be told, they still do.

In the days and weeks after he passed away more details began to emerge.  We found out that he did indeed remain clean and sober, as alcohol and drugs were not present in his system. We also found out that he had Parkinson's disease.  The bomb dropped a few days after that.  It was a revelation that hit so terribly close to home that it seemed to take all of the air out of the room. It was revealed that he had Lewy Body disease, the same disease that took my dad.  Since then, my mom and I have been praying that it will FINALLY start a conversation about Lewy Body.  So far it has not, so I am going to talk about it here.  I ask that you please share this step of my Journey with everyone you know so we can finally get this important conversation started.

Lewy Body disease, or the proper name of Dementia with Lewy bodies, while the second most common form of dementia behind Alzheimer's disease, is still something most doctors have never seen.  When we were given my dad's diagnosis my mom and I started doing research, lots and lots of research.  We learned that it is so closely related to both Parkinson's disease and Alzheimer's disease that it has symptoms of both, and it an umbrella diagnosis.  We learned that the life expectancy from onset to death is roughly 10 years, which is incredibly problematic since it is difficult to diagnose and is often misdiagnosed.  It's the disease symptoms that make it difficult to diagnose.

I watched this degenerative brain disease take the brilliant, caring, wonderful and funny man that my dad was.  I watched him suffer in a way that no one, especially not my dad, should have to suffer.  I watched my dad have hallucinations, crippling pain, memory loss and periods of confusion, including moments in which he didn't know who we were.  There were times he was in so much pain that all we could do was give him his pain medication and count the seconds for it to work.

Lewy Body Dementia is a rotten bitch of a disease and no one is talking about it.   It has no cure. There is symptomatic treatment for it, but nothing to slow it down or stop the symptoms. There needs to be research, money for the research and dedicated doctors to find a cure.  Yes, there is tons of money and research for Alzheimer's, but there is little to no awareness, funding and/or research for Lewy Body Dementia.  So I ask that you share this with everyone you know in an effort to raise awareness of this horrible, nasty, evil bitch of a disease.  I will keep talking about it.  I will continue to ask that you share this.  I will continue to keep my dad's memory alive because he deserves nothing less.