Susan Schneider Williams, wife of the late and beloved Robin Williams, recently joined the board of the American Brain Foundation, in part because of her newfound understanding of her husband’s health problems prior to his suicide in 2014.
She also published “The Terrorist inside my Husband’s Brain,” an essay about her experience with Robin’s Lewy body dementia, in Neurology. She was also interviewed in a podcast where she discussed her experience in more detail.
I had the opportunity to interview Susan in April at the Annual Meeting of the American Academy of Neurology in Vancouver, BC, Canada.
She described Robin’s struggle with Lewy body dementia, her own journey toward a better understanding of the disease, and her efforts to raise awareness about it, including the fact that the disease affects an estimated 1.4 million Americans and their families. Symptoms such as fluctuating cognition, visual hallucinations, and mood and behavioral changes are caused by the build-up of Lewy bodies—accumulated bits of alpha-synuclein protein inside the nuclei of neurons—in areas of the brain that control behavior, memory, and movement. The disease continues to be widely underdiagnosed.
In excerpts from our conversation, Susan describes what else she has learned since Robin’s death.
What were some of the changes you noticed in Robin related to Lewy body dementia?
I vividly remember Robin having a sudden spike of fear and anxiety very different from the normal anxieties and fears we all face. There was a dramatic change in his personality with paranoia and delusions and a repetitive aspect to his behavior. He also seemed depressed and couldn’t sleep. Many of his symptoms were attributed to depression or anxiety, and he could never get a clear answer from his doctors.
How did Robin change as the disease progressed?
He had difficulty focusing, and sometimes he seemed confused. After his death, I learned that he told his doctors he was having visual hallucinations. I also noticed tremors in his left hand. His face also lost expression and even his voice weakened, which was devastating for him. This constellation of symptoms made it seem like he was a hypochondriac or that he was depressed, but the symptoms came on suddenly and were more severe and vivid than before.
Research is critical for Lewy body dementia. How are you supporting that?
As a member of the board of the American Brain Foundation, I’m helping to raise awareness and increase funding for finding a cure by speaking to the public and doing interviews about Lewy body dementia and other brain diseases. I am confident that as more people become aware of this disease there will be quicker and more accurate diagnoses (unlike what happened to Robin). Importantly a lot of resources will be invested in research and finding a cure.
What are some helpful thoughts you can share with families?
The symptoms of Lewy body dementia can be very confusing and complex. Many symptoms are psychiatric in nature, and there is a certain level of stigma associated with it that prevents patients and families from opening up. My biggest piece of advice to families is these patients need you. They did not choose this disease. Just because you cannot see physical ailments does not mean they are not struggling. The chemical warfare going on in their brains means they need you to be on their side helping them fight the biggest battle of their lives.
Which movie character Robin played was closest to the man you knew?
I have not seen all of Robin’s movies, and each movie reflected a different aspect of his life. But my favorite movie is What Dreams May Come in 1998 in which Robin plays a character named Chris Nielsen who goes to great lengths to be reunited with his wife after they both die. The character’s willingness to share and partner with his wife depicts the Robin I knew and the bond we shared as a couple. I am captivated by the depth and beauty of love portrayed in the movie, which is something Robin and I shared deeply.
For more information about Lewy body dementia and other types of dementia, consult these organizations.
Alzheimer’s Association, alz.org ; 800-272-3900
Lewy Body Dementia Association; lbda.org; 404-935-6444; 800-539-9767
Dr. Govindarajan is a neurologist at the University of Missouri in Columbia, MO.