It was not until three months after Robin Willams’ death by suicide that his widow Susan Schneider Williams learned that he had suffered from the little-known but deadly Lewy body disease (LBD).
Now, Schneider has written an essay, titled The Terrorist Inside My Husband’s Brain, for the journal of the American Academy of Neurology to raise awareness of what the disease is like for patients along with their caregivers.
She describes in detail how the disease affected his brain and broke him down with symptoms ranging from insomnia to tremors, anxiety, digestive problems, significant memory loss, hallucinations and paranoia.
Doctor’s told Schneider that Robin’s was one of the worst pathologies they had ever seen, with a 40 per cent loss of dopamine neurons and almost no neurons free of Lewy bodies throughout the entire brain and brainstem.
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.
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.
Susan goes on to describe how Williams struggled to remember a single line from the Night At The Museum 3 script.
Susan goes on to reflect:
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.
Powerless and frozen, I stood in the darkness of not knowing what was happening to my husband. Was it a single source, a single terrorist, or was this a combo pack of disease raining down on him? He kept saying, ‘I just want to reboot my brain.’
In an extremely touching memory, Susan recounts their last day together and describes it as perfect and ‘like one long date’:
We did all the things we love on Saturday day and into the evening, it was perfect – like one long date.
By the end of Sunday, I was feeling that he was getting better. 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.
Williams was found dead at his home in California by his personal assistant in August 2014.
LBD is thought to potentially account for around 10-15 per cent of all cases of dementia, and Susan is doing her best to campaign to raise awareness.