Art for awareness

Fundraiser will educate on Lewy body dementia

By LISA HARRIS For the North County Times | Friday, August 8, 2008 1:17 PM PDT ∞

With the clarity of hindsight, pieces of the puzzle now slip easily into place. A declining tennis game; his vivid dreams; an inability to make routine decision ---- events that were seemingly unrelated ---- all caused by the same brain disorder.

But for years, Charles "Chuck" Leslie Walker's family searched in vain for answers while the hodgepodge of symptoms continued to baffle physicians.

Doctors would eventually diagnose Walker with Lewy body dementia, a progressive brain disease that claimed his life in 2007.

"It was easier after we had the diagnosis," said his daughter, Melissa Inez Walker of Escondido. "Then we knew what to expect and what his limitations were."

In honor of her father, Walker is hosting an art exhibition from Aug. 9-Sept. 6 at Distinction Gallery and Artist Studios in Escondido (www.distinctionart.com). She's hoping to raise $10,000 for the Lewy Body Dementia Association and in doing so, heighten the public's awareness of this condition. (See sidebar.)

Walker, a photographer and art historian by training, knows that her father, who lived in Albuquerque, N.M., was proud of her accomplishments. And she's grateful that he was present at the opening of her gallery and even helped in remodeling some of the studios.

A generous, sweet and caring family man with real business savvy (he owned a pharmacy), the elder Walker lived his life with the same passion and intensity captured by Distinction's artists. He was an avid tennis player who loved to barbecue and taught bluebirds to eat peanuts out of his hands.

And even as complications of the disease eventually claimed him, "He never once felt sorry for himself or lost his sense of humor," said his widow and caregiver, Linda.

Lewy body dementia is the second most common cause of dementia in the elderly (Alzheimer's is the first, according to the Mayo Clinic), accounting for up to 20 percent of all dementia cases. The disorder affects an estimated 1 in 200 persons in the U.S., or 1.5 million people, according to Kim Mitchell, chief executive officer of the Lewy Body Dementia Association.

Yet it remains a relatively obscure disease. Lewy body dementia has no celebrity spokesperson, no definitive diagnostic test and no known cure.

And because many of its symptoms overlap with those of Alzheimer's and Parkinson's disease, it is often misdiagnosed, said Dr. Douglas Galasko, professor of neuroscience at UC San Diego and director of the Shiley-Marcos Alzheimer's Disease Research Center.

No definitive chemical or laboratory test is available; like Alzheimer's disease, the diagnosis is confirmed only after autopsy. Diagnosis is made by evaluating the symptoms and excluding other illnesses that might be causing them.

Lewy bodies are named after the German pathologist Friedrich Lewy, who first described them in 1912. They're abnormal protein deposits found in nerve cells of the outer layer of the brain, as well as the midbrain or brainstem. Over the years, these protein lumps cause problems in behavior, thinking and memory, while also leading to physical and motor symptoms similar to Parkinson's disease.

Accordingly, patients with Lewy body dementia show symptoms along one of two paths, explained Galasko. Some have mainly cognitive problems ---- a decrease in memory, visual hallucinations, REM sleep behavior (active dreams). Many of these patients are diagnosed and treated for Alzheimer's disease; some seek help from psychiatrists.

Other patients display symptoms of Parkinson's disease, then later develop the visual problems and decreases in cognition. These individuals often visit a neurologist first.

"We don't understand why the disease progresses the way it does," said Galasko. But the cross-over in symptoms frequently complicates the diagnosis as well as the treatment.

In Walker's case, as with others, doctors relied heavily on the account of family members to help find answers. Still, his symptoms would lead to a series of misdiagnoses ---- Parkinson's disease, adult attention deficit disorder, post-polio syndrome and cortical basil ganglia degeneration.

This problem of incorrect labels is typical for families, said Mitchell. "Most primary care doctors know little about LBD and don't pass the patients along to refine the diagnosis."

Another difficulty Lewy body dementia patients encounter is a vulnerability to the side effects of drugs commonly used in treating their symptoms.

"For example, medications used for controlling hallucinations can lead to severe reactions, profound deterioration and even death," said Galasko. Conversely, some drugs used for Parkinsonism can trigger confusion, delusions or hallucinations.

As a result, Galasko believes the future of Lewy body dementia treatment lies in making earlier and more accurate diagnoses.

"This disease causes a great deal of damage to nerve cells, and it's unclear if the cells will be able to regenerate or recover," he said. Scientists are also looking for the best combination of drugs to control symptoms and halt or slow down further injury.

Other investigations being conducted around the country include attempts to refine imaging techniques, establish biomarkers for the disease, develop animal models and discover the genetic roots of Lewy body dementia.

"Things are moving more rapidly now," said Mitchell. "There are pockets of research out there, but they're not all communicating well."

Thus, one of the association's priorities is to organize a symposium in late 2009 inviting top researchers, clinicians and industry representatives from around the world.

"Our goal is to springboard the body of knowledge to get closer to a better diagnosis, better treatment and medications."

In sharing their memories of Walker's journey, his family hopes to provide insight for others trying to diagnose loved ones with cognitive difficulties.

"I have yet to personally meet one person or one caregiver involved with LBD," said Walker's widow, reflecting on their struggles dating back to 1996.

Considering that Lewy body dementia is the second most diagnosed cause of dementia, there's still lots of work to be done in educating both physicians and the public.

WHAT: "Project 57" group show: All gallery commissions to benefit the Lewy Body Dementia Association in memory of gallery owner Melissa Walker's dad, Charles Leslie Walker.

WHERE: Distinction Gallery & Artist Studios, 317 E. Grand Ave., Escondido

WHEN: Aug. 9-Sept. 6

INFO: (760) 781-5779; distinctionart.com

RECEPTION: 6-11 p.m. Aug. 9. Admission $10.

"Project 57" will feature works of figurative pop and urban surrealism from 110 artists representing five countries. "These paintings are often inspired by our culture, comics, Japanese Anime, surrealism, pop art and hot rods," gallery owner Melissa Inez Walker explained.

Walker has put more than a year into planning this event, her studio's biggest show to date. For the exhibit, her husband and fellow art enthusiast, Sam Pulvers, built dozens of 5-inch-by-7-inch birch panels that were used as canvases.

The resulting works, created by up-and-coming as well as established artists, normally sell for $100 to $1,500. But during the silent auction on Aug. 9, they'll start at a 50 percent discount. And while artists typically receive half of the profits from such sales, most have offered to donate 100 percent to the Lewy Body Dementia Association. Bidding will begin at noon Tuesday. Bids will be accepted in person, by phone, or online. The auction will end at 10 p.m. Aug. 9.

The primary Lewy body dementia symptom is dementia ---- a progressive cognitive decline that features executive functioning deficits, like the inability to plan or perform abstract or analytical thinking.

Also:

-- Fluctuating cognition with clear variations in attention, alertness and wakefulness.

-- Recurrent visual hallucinations that are typically well formed and detailed.

-- Parkinsonism usually occurs at the same time or after the onset of dementia.

Typical age of onset: Between 50 and 85 years

Prognosis: An average of 5 to 7 years from the time of diagnosis

Treatment: An accurate diagnosis is needed to guide treatment. Along with proven medications, The Lewy Body Dementia Association recommends a comprehensive approach to therapy, addressing cognitive, motor, sleep, neuropsychiatric and other issues. Healthy lifestyles may also help: exercise, mental stimulation, good nutrition. For patients living at home, establishing a routine is important.

Caregivers: Find support at the Caregivers' Helpline, (800) LEWY-SOS or LBDA Web site, www.lbda.org.

Source: Lewy Body Dementia Association, Inc.

P.O. Box 451429

Atlanta, GA 31145-9429

(404) 935-6444

(480) 422-5434

lbda@lbda.org

Lisa Harris is a freelance writer in Temecula.

CORRECTION: Incorrect name in health section story
An incorrect name was reported in the main story of Sunday's Your Health section. The "Project 57" art show at Distinction Gallery and Artist Studios in Escondido will honor the late Charles "Chuck" Leslie Walker.
We apologize.