A few years ago, if somebody mentioned Lewy bodies to me, I would have said “Lewy who?” However, there have been recent circumstances in my life where I have felt the need to get better acquainted with him (or her). First was the suicide of my soul mate, Steve Tarpinian in March, 2015 and then, my diagnosis of Parkinson’s Disease in November, 2015.
My fascination with Lewy bodies began in August, 2016 when I watched a documentary called “Robin Williams’ Last Hours”. In this film, the world renowned forensic pathologist, Dr. Richard Shepherd, wanted to determine what drove Robin Williams to suicide. In August, 2014, Robin hung himself and the official cause of death was asphyxiation. Robin had also been previously diagnosed with Parkinson’s Disease (PD) and like Steve, he suffered from depression, yet both were super talented men who made people happy and it seemed they both had lives full of promise ahead of them. According to the documentary, Robin was at a crossroads in his career. Steve was also at a crossroads in his life as he was trying sell the business he built and grew for over twenty years. In the film, it implied that Robin may have turned to drugs and alcohol to feel better and mask his depression. It seemed as though Steve turned to endurance sports to accomplish the same. In my mind, their lives and tragic endings had so much in common.
Lewy bodies are abnormal protein deposits that disrupt the brain’s normal functioning. These Lewy body proteins can be found in an area of the brain stem where they deplete the neurotransmitter dopamine, causing Parkinsonian symptoms. There is a disease called Lewy body dementia, where these abnormal proteins are diffuse throughout other areas of the brain, including the cerebral cortex. The brain chemical acetylcholine is depleted, causing disruption of perception, thinking and behavior (paranoia, anxiety, impaired decision making etc.). Currently, a conclusive diagnosis of Lewy body dementia can be obtained only from a postmortem autopsy. According to Dr. Shepherd, in Robin Williams case, the autopsy confirmed Lewy bodies were found throughout his brain. In the days leading up to Robin’s suicide, according to Dr. Shepherd’s interviews with Robin’s family, Robin was showing signs of paranoia. Dr. Shepherd finally concluded that Robin Williams had undiagnosed Lewy body dementia and that it was this disease that drove Robin to take his own life. In an editorial (“The terrorist inside my husband’s brain”) written for the Neurology journal, Robin Williams wife, Susan Schneider Williams, tells the heartbreaking story of how this disease affected their lives together. Many parts of it could have been describing Steve and myself .
As it is with many suicide survivors, we are left with so many unanswered questions; how could this happen, why couldn’t the professionals help our loved one, what could we have down differently? On an intellectual level, I have accepted the fact that most of my questions will never have answers.
However, one question still haunts me. I know how Steve died, but what caused him so much pain that it drove him to suicide?
I will never forget, a few weeks before Steve died, he told me in a phone conversation (he was at an inpatient facility in another state) that he was so afraid, yet, he would not or could not articulate what he feared. This paranoia was not characteristic of Steve.
After watching Dr. Shepherd’s documentary on Robin Williams, I contacted the coroner’s office where Steve was taken after he died and was told no autopsy was performed since the cause of death was readily apparent. Autopsies for suicides are not routinely performed if the cause of death is easily discernible (this protocol may vary by state). Although it would not have changed anything for Steve, I wonder if autopsies should be routinely performed and analyzed for Lewy body presence in the brain in certain suicide circumstances. Obviously there are emotional considerations for the family and costs involved, but, perhaps what can be learned from these autopsies may help others before they get to the point of suicide.
Perhaps undiagnosed Lewy body dementia may be more prevalent than we think, especially where suicide may have been the obvious cause of death.