Day 45 – Encountering Lewy Body Dementia

This week I watched the stirring new documentary chronicling Robin William’s final days, Robin’s Wish. Robin has always been a particular hero and favorite of mine. His comedic genius was/is unparalleled. Beyond just being a comedian and actor, he was a man of great heart. He was also a broken man who struggled with depression and addiction. His passing in 2014 affected me deeply.

Roger Ebert: During his final year, Williams suffered from Lewy body dementia, a painful neurological disorder. The physical and mental suffering (which included insomnia, depression, and cognitive decline) baffled him and those close to him, and eventually pushed him over the brink.

SFChronicle: The film, both medical and biographical, begins when Williams’ widow, Susan Schneider Williams, examines the coroner’s report and makes a shocking discovery: Her husband’s brain was ravaged by disease — not by Parkinson’s, but by Lewy body dementia. It is haunting to find out that the brilliant actor knew instinctively that something was very wrong with him — way beyond the realm of his diagnosis — and that he could sense the walls of his life crumbling around him.

It is fitting and ironic, that even from the grave, he is still able to offer hope to others. As depicted in the movie, his personal copy of the A.A. treatise, Twelve Steps And Twelve Traditions, was inscribed with a dedication he wished as his legacy; “I want to make people less afraid”. Perhaps THE most daunting and terrifying aspect of his malady, is that Robin suffered from an onslaught of symptoms for which there was no adequate explanation or accurate diagnosis.

The Lewy Body Dementia Association, one of the five consulting partners to Robin’s Wish, is dedicated to raising awareness of the Lewy body dementias (LBD), supporting people with LBD, their families and caregivers and promoting scientific advances. They offer a plethora of information and resources for professionals, patients and caregivers including a checklist of symptoms and a list of support groups.

From Newsweek – Robin Williams Quote: “Self goes away. Ego, bye bye. The thing that matters are others. That’s what life is about.”