In a touching paper published in the journal Neurology Thursday, Robin Williams’ widow shares the heartbreaking story of her husband’s final 10 months and asks neurologists not to give up in their quest toward brain disease cures.
Susan Schneider Williams refers to Lewy body disease, the neurodegenerative disorder that ultimately led to Williams’ suicide in August 2014, as “the terrorist inside my husband’s brain.”
Lewy body disease is a kind of dementia in which patients suffer a general decline in cognitive functioning such as thinking, memory and language.
She describes how, toward the end of his life, “Robin was losing his mind and he was aware of it.” He was struggling with paranoia, anxiety, delusions, insomnia, and other symptoms both physical and mental, and for months, he and his wife could get no answers about what was happening to him.
He was eventually diagnosed with Parkinson’s disease, but as his symptoms continued to worsen, he grew “weary” and it felt like they were both “drowning.” Then, ultimately, he took his own life.
It was only after his death that an autopsy revealed Williams actually had Lewy body disease — his clinical symptoms mirrored Parkinson’s, but his brain pathology showed that almost all of the neurons throughout his brain and brainstem had been besieged by Lewy bodies, Schneider Williams writes.
When she found out, she wasn’t surprised: “The mere fact that something had invaded nearly every region of my husband’s brain made perfect sense to me,” she writes.
She has spent the time since Williams’ death learning all she can about Lewy body disease, for which there is no cure, and she now serves on the Board of Directors for the American Brain Foundation.
Her full piece is worth a read.