Scientific data and research can be helpful in identifying different types of dementia and their corresponding symptoms and behaviors. But sometimes, hearing someone’s personal experience is the only way to truly understand what it’s like to live with dementia.
Assistant executive director Karen Malekos Smith shared that Atria at Foster Square got an intimate view into life with Lewy body dementia (LBD) when they hosted Susan Schneider Williams, the widow of commedian Robin Williams. According to an article in the San Mateo Daily Journal, Schneider Williams was there to raise awareness about LBD through “a special presentation she hopes will help educate anyone who is affected by brain disease and inspire dedication to searching for a cure.” The article continues:
In late 2014, her husband committed suicide shortly after experiencing a rash of strange symptoms and being diagnosed with Parkinson’s disease. It wasn’t until after his autopsy it was revealed he was also suffering from an acute case of Lewy body dementia, or LBD. The discovery drove her into researching the dementia to which she now attributes her husband’s untimely death.
“Robin and I experienced this together and we experienced the symptoms. Then he left, he had to leave. And I’m here on the backside looking at it. I get the opportunity to look at the science of what he and I just experienced. So for that, I’m doing this,” Williams said. “It’s for us and for anybody who’s suffering already or who will be.”
The cause of LBD is unknown but it’s a neurodegenerative disorder that involves a mutation or buildup of a typically normal protein in the brain. Affecting 1.4 million people in the United States, it is one of the most common forms of dementia after Alzheimer’s disease and there is no cure, Williams said.
An artist and the daughter of a pathologist, Williams is channeling her experience into educating those with a loved one affected by brain disease. She also hopes to enthuse scientists and the research community to focus on finding a cure.
She’s able to traverse the discussion from purely scientific terms to sharing her own firsthand experience of watching the man she loved slip away. In September 2016, Williams wrote an essay for the Journal of the American Academy of Neurology titled “the terrorist inside my husband’s brain.”
Williams drew from the essay during Thursday’s presentation at Foster City’s Atria Senior Living titled “The Unchosen Path: Walking with Dementia.”
“The unchosen path, I certainly did not choose this, Robin didn’t choose it, no one chooses brain disease. But like so many things in life, when you gain experience by a certain journey, it’s human nature to want to pass on what you learned,” Williams said.
In addition to her presentation, Williams also donated one of her paintings in memory of her husband.
According to the article, Williams’ ultimate goal in speaking about her experience is that it “will be a benefit to others — whether it’s a caretaker unsure of a why a loved one is struggling, or a person who may be experiencing brain disease themselves.”
So, let’s keep the conversation going. According to the Alzheimer’s Association, Alzheimer’s disease accounts for 60-80 percent of all dementias, but there are many other types with different symptoms and treatments. Do you have a loved one or resident in your community with Lewy body dementia, or one of the other less common dementias? Share your thoughts and experiences below.