I feel the pain of Susan Williams, the widow of Robin Williams. When she told Good Morning America, "Lewy body dementia killed Robin. It's what took his life," I understood, because Lewy body dementia (LBD) is what killed my mother, Mama Jean (Brickhouse). By speaking publicly, Susan Williams is shedding a desperately needed spotlight on LBD, whose biggest challenge is awareness. Thanks to her, people might stop responding "Lewy who?" and start asking, "What's being done to treat and cure LBD?"
Mama Jean didn't take her own life, but she completely lost her mind to LBD. I hope to raise awareness of LBD through my memoir, Dangerous When Wet. Much of it is about my relationship with Mama Jean, and I chronicle the loss of her mind, rapid decline and devastating death from LBD. My book is the first to tell one person's story about the effects of this little-known disease.
Mama Jean was a star to me. With her raven mane professionally done to a tease, makeup always camera ready, she was the Elizabeth Taylor of the small Texas town where I grew up. Like a star, she was self-made. Her jungle-red fingernails clawed out a huge chunk of the financial pie as a stockbroker in the 1980s -- no small feat in what was still a good ole boys' club. So it was doubly devastating when this force of nature started slipping away in much the way that Robin Williams did, as Susan Williams describes the last part of his life.
LBD is named for Friederich H. Lewy, who discovered in the early 1900s the abnormal protein deposits that disrupt brain function. In Alzheimer's patients, lapses in short-term memory are among the first symptoms, while LBD patients might encounter severe disruptions in attention and judgment, hallucinations, delusions and acute sleep interruptions. According to the Lewy Body Dementia Association, LBD "affects an estimated 1.3 million individuals and their families in the United States, but many doctors or other medical professionals still are not familiar with LBD."
Despite that million-plus figure, awareness of LBD is so low -- in and outside of the medical community -- that obtaining a proper diagnosis is often extremely difficult. As the New York Times recently reported, "The disorder is often mistaken for Alzheimer's disease, or Parkinson's disease: There's an Alzheimer's-like slippage in memory and thinking, as well as stiffness and movement problems seen in Parkinson's. The similarities in the three disorders are extensive enough that it often takes more than a year -- and multiple visits to specialists -- to get an accurate diagnosis."
That was the challenge my family faced. After Mama Jean lost her mind, it took four months, several doctors, two geriatric hospitals, and one nursing home before we received a diagnosis. And yet, in all that time, the first time we heard the words Lewy body dementia, was not from doctor but from a family friend whose husband had LBD. The path to diagnosis should not be that circuitous.
Every tragedy sheds a new ray of light. Every disease needs a star. The tragic death of Robin Williams cast a ray of light on LBD and made him a new kind of star, the star of LBD. To me, the biggest star of LBD will always be Mama Jean. We can all do our part by spreading the word about our own stars who are suffering or have died from LBD. The more stories we hear, the more LBD will have beat the challenge of awareness, so it can move on to the momentous challenges of treatment and cure.
You can learn more about LBD by visiting the Lewy body dementia association's website: www.lbda.org.
Jamie Brickhouse is the author of Dangerous When Wet a darkly comic memoir about booze, sex and his mother, Mama Jean (St. Martin's Press).