Susan Schneider Williams describes Robin Williams’ final months in an essay she had sent to the medical journal Neurology. The late actor’s wife is still struggling to find answers about her husband’s mental illness which she calls “the terrorist inside my husband’s brain”.
Schneider wrote the essay especially for the medical journal Neurology in hopes that it would shed more light on the research conducted about her late husband’s mental illness, that the specialists had diagnosed too late. Robin Williams was suffering from Lewy Body Disease, or LBD. It an illness that his wife calls “the terrorist inside my husband’s brain”. She titles her essay the same and gives a glimpse over Williams’s final months. “Perhaps this will add a few more faces behind the why you do what you do.”
Williams got an LBD diagnosis three months after his death. The coroner has stated in the report of the autopsy that diffuse LBD played a major role in the actor’s suicide. All the doctors that had taken part in the research said the same thing, adding that it was one of the worst cases they had encuntered. „He had about 40% loss of dopamine neurons and almost no neurons were free of Lewy bodies throughout the entire brain and brainstem,” Schneider recalls.
As she continues her essay, Williams’ wife writes about the foundation of their relationship and their strong connection. She says they were constantly sharing, from hopes and fears, to everyday experiences. This helped her spot changes in his behavior, even though not cleary attirbuted to any condition at that time. Signs of the undiagnosed-then LBD started surfacing in October of 2013. Aside from physical symptoms of constipation, urinary difficulty, heartburn, sleeplessness and insomnia, shaking in his left hand and the loss of smell, Williams was dealing with alot of stress. „His fear and anxiety skyrocketed to a point that was alarming”. Schneider remembers she was asking herself whether her husband had become a hypocondriac. A year after his death, she learned that all those signs together were syptoms of the disease.
In just a couple of month, Williams’ condition was getting worse fast. „By wintertime, problems with paranoia, delusions and looping, insomnia, memory, and high cortisol levels—just to name a few—were settling in hard.” The following months he had a panic attack, was losing his memory and was diagnosed with Parkinson’s disease. As his wife puts it, he was drowning in symptoms and she was drowning with him.
„Robin was losing his mind and he was aware of it”, she writes.
Looking back, all his symptoms were LBD, but the doctors did not come up with the diagnosis because the actor was lacking one important differential symptom: he was not accusing hallucinations. Later on, after his death, the doctors who examined his brain were sure that he had. „A year after he left, in speaking with one of the doctors who reviewed his records, it became evident that most likely he did have hallucinations, but was keeping that to himself.” Instead, he kept on saying :“I just want to reboot my brain.”
Robin Williams commited suicide in August 2014, at his home in Paradise Cay, California.
LBD is a type of progressive neurodegenerative dementia, with no cure at the moment.
Almost 1.5 million peope in the United States are suffering from LBD at present.
Read Susan Schneider Williams’ essay, The terrorist inside my husband’s brain, here.