Every disease needs a star. While I extend my sympathy to legendary disc jockey Casey Kasem and his family, it is with regret that I must welcome this week's news that he has Lewy Body Dementia (LBD), because his diagnosis may finally bring LBD the attention it deserves. Perhaps Kasem will become synonymous with LBD in the way that baseball legend Lou Gehrig did with Amyotrophic Lateral Sclerosis (ALS), and singer Karen Carpenter did with anorexia and bulimia. Kasem may be the most recognizable face of LBD right now, but the first and enduring face of LBD for me will always be my mother, Mama Jean. In the way that alcoholics share their stories to help other alcoholics, I share Mama Jean's story to help those who are coping with LBD. Out of the darkness of her LBD came one enduring gift for me.
Lewy what? Almost everybody has heard of Alzheimer's, but few are aware of LBD, an equally devastating dementia that is progressive and fatal. (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."
I sure as hell can tell you about that.
But first let me introduce you to Mama Jean. She 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. When she overheard one broker bragging about how he poached clients, she stuck her head in his office and said, "I heard what you just said. Let me tell you something. If you ever do that to me, I'll cut your balls off." He never did. Her ascent was marked by a graduating succession of luxury cars: Mercury Marquis, Lincoln Town Car, and then a series of Cadillacs. She was always in the driver's seat.
I felt this my whole life, but especially when she flew from Texas to where I live in New York City to rescue me, her then 38-year-old, redheaded baby son. I was suffering from alcoholism, the disease that Betty Ford pulled out of the gutter when she became the face of it.
Mama Jean took control. The night before she sent me to a rehab in Palm Springs not far from Betty Ford's clinic, she stared me down. With gritted teeth and a red finger-nailed point she said, "Your drinking days are over." If it's possible to be scared sober, Mama Jean could do the job.
Two years later she drove her Cadillac through the wall of her bridge club. Lucky for her fellow bridge players, she was early so no one was hurt, including her. A year after that she drove the repaired Cadillac to the beauty salon. Not unusual, except she wasn't wearing any pants. Her priorities were in order, but the execution was misfiring.
When she started having wild hallucinations and believing her worst nightmares were true, Earl, my dad, and Jeffrey, my brother, made a series of visits to doctors, none of whom ever mentioned Lewy Body Dementia as a possible cause. They never mentioned LBD, period. The first we heard of it was from a family friend whose husband had died of LBD.
Not long after that pant-less drive, Mama Jean's mind exploded into a bad acid trip of wild hallucinations and delusions and she had to be hospitalized. The facility was comfortable and she was given some lovely pills to stabilize her, but no diagnosis came. Again, LBD was never even mentioned -- and this was the geriatric unit of the facility. We got our answer when Jeffrey found a neurologist who specializes in memory disorder. Thanks to that family friend and not to any of the doctors we'd seen to date, we had LBD in the dark corner of our minds. Still, when the diagnosis came it was a punch in the stomach. In fact, Mama Jean punched the neurologist who diagnosed her. During the exam he tested her reflexes with a rubber-headed hammer hit to the knee and she hit him back, right in the gut.
"No patient's ever done that to me before," the stunned doctor said.
"You've never met Jean Brickhouse," my father beamed with pride.
Mama Jean's mind was already gone, but her reflexes -- the ones that declared, "Don't mess with me, I'm in charge," -- were still firing. It was the kind of moment -- a brilliant spark of lucidity -- that crystalizes the essence of a person after their mind has been hijacked.
Like her Cadillac and the bridge club wall, her disease and my disease collided the first time I saw her after she went haywire. It was my turn to come to her rescue; so I took the reverse flight -- New York to Texas -- she had taken almost three years prior when she put me into rehab. I was still struggling with booze and had relapsed a few times but never told her.
However hard I tried to prepare for the worst, I kept harboring fantasies that I would somehow master the code and bring her back. Jeffrey warned me that she might not know me. I nodded yes, but part of me didn't believe that that was possible.
Did she know me? I can't say. At one point she smiled and told me that with my pretty red hair I reminded her of... and then she trailed off. Everything she said that day lacked something she had never lacked: conviction.
When it was time to leave we stood in the hall and I hugged her goodbye. When I turned to walk away her hands clamped my forearm in a vice grip. It hurt. I turned and she stood staring at me, her teeth gritted. She was furious with me and about to let me have it. She kept one hand gripped on my arm and released the other to point her index finger at me in accusation. "You've been drinking." She was having one of those LBD, worst-nightmares-are-true moments.
"No I haven't." I hadn't. I had seven months sober and felt like I might finally reach one year.
"You better not be."
"Remember, Mama? That's all behind us. You took care of that. I have you to thank. You don't have to worry anymore."
She looked at me warily before she accepted what I said. "Okay, but promise me. Promise."
"I promise." I thought, If I can't stay sober for myself, do it for her.
She stood there silently, her eyes fixed on me. For one last time -- before LBD claimed her forever -- she was in charge.
Mama Jean died five months later, just a week shy of my first year of sobriety. I've been sober ever since. For me the star of LBD is Mama Jean.
Jamie Brickhouse is the author of Dangerous When Wet, a darkly comic memoir about booze, sex and his mother Mama Jean to be published by St. Martin's Press in spring 2015.
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