Susan Schneider Williams has opened up on the struggles the couple faced as the actor’s health deteriorated in the last few months of his life.
In a personal essay for the medical journal Neurology called The Terrorist Inside My Husband’s Brain, Robin’s widow writes frankly and honestly about her husband’s decline.
“This is a personal story, sadly tragic and heartbreaking, but by sharing this information with you I know that you can help make a difference in the lives of others,” Susan wrote.
Susan’s husband, Robin Williams’, died suddenly in August, 2014. The news of the actor’s passing sent shock waves around the world.
The couple were married from 2011 until his death, and in the essay, she shares her experience of trying to find a proper diagnosis for her husband’s illness.
Originally, Robin was diagnosed with Parkinson’s disease, and although the diagnosis fit with some of the symptoms the actor was experiencing, the depth of his symptoms wasn’t fully recognised.
In the months leading up to his death, Susan wrote, the actor’s suffering was extreme, and while the couple worked hard to manage the effects of his condition, Robin’s mental and physical health deteriorated rapidly.
Susan didn’t find out the true cause of her husband’s illness until three months after he died. The coroner’s report revealed he had Lewy body disease.
Watch Susan Schneider Williams share Robin Williams’ final words to her in emotional interview. Post continues after video.
“Once the coroner’s report was reviewed, a doctor was able to point out to me that there was a high concentration of Lewy bodies within the amygdala,” she explained in the essay.
“This likely caused the acute paranoia and out-of-character emotional responses he was having. How I wish he could have known why he was struggling, that it was not a weakness in his heart, spirit, or character.”
Since his death, Susan has actively campaigned to raise awareness about LBD, a form of dementia that is widely misunderstood and often under-diagnosed.
