Robin Williams’s widow is opening about the terrifying condition that ravaged the comic’s mind and body and drove him to take his own life two years ago.
In a candid essay that appears in Neurology – The Official Journal of the American Academy of Neurology – Susan Schneider Williams goes into heart-breaking detail about Lewy Body Disease (LBD), which she dubs “the terrorist inside my husband’s brain.”
The little known condition is a form of dementia that left the actor with a series symptoms that devastated him, including hand tremors, depression and sleeplessness.
And shockingly the widow says she didn’t even know Robin had LBD until an autopsy revealed the condition three months after his death in August 2014. Prior to his suicide the 63-year-old star had been diagnosed with Parkinson’s disease.
Susan says Robin’s symptoms first started to appear back in October 2013.
She writes: “He had been struggling with symptoms that seemed unrelated: constipation, urinary difficulty, heartburn, sleeplessness and insomnia, and a poor sense of smell – and lots of stress.
“He also had a slight tremor in his left hand that would come and go. For the time being, that was attributed to a previous shoulder injury.”
She says he also “started having gut discomfort.” The catalogue of symptoms led her husband’s fear and anxiety to skyrocket to “a point that was alarming.”
Throughout that winter she says he battled “paranoia, delusions and looping, insomnia, memory, and high cortisol levels.”
The actor sought medical attention but it wasn’t until April – while he was filming Night at the Museum 3 in Vancouver, Canada – that he suffered a panic attack and struggled to remember his lines.
She writes: "Robin was losing his mind and he was aware of it. Can you imagine the pain he felt as he experienced himself disintegrating? And not from something he would ever know the name of, or understand? Neither he, nor anyone could stop it – no amount of intelligence or love could hold it back."
In the extensive essay, Susan details the tragic deterioration of the actor’s mind and emotions and their search for a diagnosis.
“He kept saying, ‘I just want to reboot my brain’,” she writes. “Doctor appointments, testing, and psychiatry kept us in perpetual motion. Countless blood tests, urine tests, plus rechecks of cortisol levels and lymph nodes.”
Robin was losing his mind and he was aware of it. Can you imagine the pain he felt as he experienced himself disintegrating?
Robin even had a brain scan. Finally on May 28, 2014 he was diagnosed with Parkinson disease. Although the troubled star feared he had Alzheimer’s, dementia and schizophrenia.
Susan says that although their summer was “sprinkled” with “happiness,” her husband was “drowning in his symptoms” and she now thinks that he was hiding the intensity of his condition and fears from her.
The artist even describes the last night she spoke to her husband before he hung himself in their Tiburon, California home.
She writes: “When we retired for sleep, in our customary way, my husband said to me, ‘Goodnight, my love,’ and waited for my familiar reply: ‘Goodnight, my love.’ His words still echo through my heart today. Monday, August 11, Robin was gone.”
She adds: “After Robin left, time has never functioned the same for me. My search for meaning has replicated like an inescapable spring throughout nearly every aspect of my world, including the most mundane.”
After learning the true nature of his condition, three months after his death, Susan devoted the next two years to researching LBD and even now sits on the Board of Directors for the American Brain Foundation.
She writes that she has since learned that the condition – which is incurable – was so severe in his case that a professional told her, “It was as if he had cancer throughout every organ of his body.”
Her essay is aimed at doctors so they can learn more about LBD through her intimate experience facing its effects. It affects 1.5 million Americans.
She writes: “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.”
If you or someone you know is battling suicidal thoughts seek help at The National Suicide Prevention Lifeline at 1-800-273-TALK (8255) in the US or the Samaritans on 116 123 in the UK.