Terrorist in His Brain: Robin Williams’ Wife Speaks on His Illness

Robin Williams’ wife Susan Schneider has spoken out about the actor’s struggle with Lewy body dementia in his last days in a heart wrenching essay titled “The Terrorist Inside My Husband's Brain” for the medical journal Neurology.

The debilitating disease led to his suicide in August 2014. Williams was misdiagnosed with Parkinson’s disease two months before his death. She writes,

Robin was growing weary. The Parkinsonian mask was ever present and his voice was weakened. His left hand tremor was continuous now and he had a slow, shuffling gait. He hated that he could not find the words he wanted in conversations. He would thrash at night and still had terrible insomnia. At times, he would find himself stuck in a frozen stance, unable to move, and frustrated when he came out of it.

The confusion over his diagnosis magnified his suffering as he struggled with a disintegrating brain, she further writes. According to her, Williams and his doctors spent 10 months to figure out the cause of his neurological and psychological issues. However, his situation got so bad that the Dead Poets Society actor wanted to 'reboot' his brain.

I have since learned that people with LBD who are highly intelligent may appear to be okay for longer initially, but then, it is as though the dam suddenly breaks and they cannot hold it back anymore. In Robin’s case, on top of being a genius, he was a Julliard-trained actor. I will never know the true depth of his suffering, nor just how hard he was fighting. But from where I stood, I saw the bravest man in the world playing the hardest role of his life.

Advocating for raising awareness about Lewy Body Dementia and noting that after Williams’ death, the doctors told her that ‘Robin’s was one of the worst LBD pathologies they had seen,’ she says:

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?

(Source: Neurology Journal)