By Lucia Mauro
Special to the Tribune
Copyright © 2004, The Chicago Tribune
January 25 2004

When Ben Byer was studying film theory and directing experimental shorts at the University of Paris, he never imagined someday making a documentary that could save people's lives -- including his own. Almost two years ago, the 33-year-old Chicago actor and playwright was diagnosed with amyotrophic lateral sclerosis (ALS), a rapidly progressive neuromuscular disease more commonly known as Lou Gehrig's disease.

But instead of plopping down in a wheelchair and waiting to die -- since there is no known cure for the disease -- Byer decided to give ALS' often invisible victims a face and a voice. He has been interviewing ALS patients of all ages around the world for a film documentary, "ALS: The Quest for a Cure," which he plans to release in summer 2005. He is acting as producer, director and writer with director of photography Roko Belic (Academy Award nominee for "Genghis Blues"). Excerpts from the film-in-progress will be shown Sunday during a fundraiser for the movie project at the Athenaeum Theatre (which includes a stage performance featuring Byer in Lee Hall's dark comedy, "Cooking With Elvis," running through Feb. 7).

"Even though I'm an actor, I didn't want to use actors for this film," said Byer in his Logan Square apartment. "It's much more palpable when you're watching real people with ALS tell their stories -- people who would do anything to stand up or say a complete sentence. I have ALS myself. So I'm interested in telling the truth."

An isolating disease

According to statistics provided by the ALS Association, a little more than 5,000 people in the United States are diagnosed with ALS each year. It is estimated that as many as 30,000 Americans may have the disease at any given time. And those low figures, compared with other ailments such as cancer, make ALS a very isolating disease. Life expectancy of a person diagnosed with ALS averages between two and five years.

But ALS' fatalistic nature did not deter Byer or his father, Stephen Byer, a retired art dealer, from vigilantly researching alternative treatments.

"I heard the `ALS speech' -- when the doctor tells you to go home and get your affairs in order -- four times," recounted Stephen Byer, who lives in Dodgeville, Wis. "What pushed me to seek other treatments for my son is the fact that Western medicine has developed nothing for ALS in the approximately 170 years that the disease has been known in the West."

His exhaustive online research led him to neurologist Yong Chao Xia of Beijing Medical University, who -- over the past 30 years -- has been developing an herbal cocktail for neurodegenerative diseases, particularly ALS. In clinical trials conducted in China, 20 out of 23 ALS patients showed significant improvement. The neurologist's daughter, medical researcher MengQi Xia, is continuing studies of the herbal treatment in the Boston area.

Going on the regimen

In March 2003, Ben Byer became the second ALS patient in America to go on the herbal cocktail regimen. Called Bu Nao Gao (literally "decoction for brain nourishment"), the mixture of several dried herbs that look like hunks of tree bark and mud pies is boiled down to a brownish broth, which Byer drinks twice a day. "It's like drinkable tobacco," Byer said as he described the taste.

He is quick to note that Bu Nao Gao is not a miracle cure and that it has proven to be more effective for ALS patients in the early phase of the disease. Essentially a cleansing agent, Bu Nao Gao is geared toward opening up passageways in the body that have been blocked. Byer talks about the herb mixture in his film, not as a way of giving false hope to ALS patients, but to offer them an option besides rapid muscular destruction and death.

In 2002, Byer began experiencing slurred speech and weakness in his hands while performing in a play at Chicago's European Repertory Company. Initially diagnosed with carpal tunnel syndrome, he then sought opinions from top neurologists around the country and was soon given the ALS verdict. Not long after, his vocal muscles weakened to the point in which speech and swallowing were extremely difficult. The muscles in his hands began to atrophy, making it a challenge to do simple things, like hold a fork or tie his shoes.

Over the past 10 months, since first taking Bu Nao Gao, Byer has not experienced further muscle atrophy. His speech has improved, and he recently began working out with a personal trainer to increase muscle mass. He can walk and continues to drive, and he even plays with his 3-year-old son.

`Not a magic pill'

Although Byer says the herbal treatment is not "a magic pill," he believes, "at least I have a fighting chance in hell."

His film, therefore, is more about raising ALS awareness and providing hope for a better quality of life than touting an instant cure. The filmmaker calls his documentary -- which grew out of an audio diary he began shortly after he was diagnosed -- "funny, biting, sad and even difficult for some people to swallow."

As he gets to know other ALS patients through his filmmaking, Byer feels like they are "fighting a war together."

It's also his goal to take the disease beyond its death-sentence associations with its namesake, New York Yankee Lou Gehrig, who died from the effects of ALS in 1941.

"It's hard for me to relate to Lou Gehrig," Byer said. "I'm more inspired by a guy [with ALS] in Dayton, Ohio, who can move one finger and believes he can walk again."