LIVING WITH FIBROMYALGIA VIDEO

Discussion in 'Fibromyalgia Main Forum' started by darude, Dec 7, 2006.

  1. darude

    darude New Member

    Daneen Akers sold her house in Oceanside to make a film she hoped would help people like her mother.

    Her mom has fibromyalgia, a chronic pain condition that left her bedridden for much of two years.

    The documentary, called “Living with Fibromyalgia,” focuses on her mother and six others with the condition.
    “It's about being open to different ways to cope. The message is don't give up,” Akers said.

    That's a strong message coming from someone who saw her mother checking train schedules with dark thoughts of ending it all.

    At first Akers' mother, Darlene Akers, 58, didn't know what she had.

    “When you're bedridden and don't know what's wrong, you can't see the light at the end of the tunnel,” Darlene said.

    “Living with Fibromyalgia”

    All she knew was that she was in so much pain that she had to stay in bed, and even the weight of the bed sheet hurt. It was those dark days and her mother's eventual recovery that got Daneen thinking about making a film for other families facing the same situation and wondering what to do.

    For Darlene, an Oceanside resident, it all started nine years ago when she tripped on wet pebbles and fell on her knee. It was the same day she finished her fastest five miles training for the Honolulu Marathon.

    But after the fall, she couldn't get back on her feet.

    “She was flat on her back or in a wheelchair, and we were scrambling to find out what was wrong,” Daneen said.

    It was tough for Darlene, who was used to getting up at 4:30 a.m. to run or bike before starting work. Not knowing why the pain started made it even harder to take.

    “It took awhile to believe my mom and find ways to help her. We were in the dark,” Daneen said.

    Slowly, the family started collecting clues.

    Three years after the fall, Darlene was diagnosed with fibromyalgia.

    “It's a disorder of the central nervous system, and stimuli don't get processed correctly,” Daneen said.

    In 2004, seven years after her mother's fall, Daneen and her husband, Stephen Eyer, started filming the documentary in their San Francisco apartment.

    “We wanted to share what we had learned so other families wouldn't be in the dark,” Daneen said.

    Daneen is the film's narrator. She interviewed four fibromyalgia specialists from Cedars-Sinai Medical Center in Los Angeles and seven patients, including her mother and Lynne Matallana, president of the National Fibromyalgia Association.

    “The film is empowering. It gives people credibility that they have a real illness and that others out there are dealing with it. It's not a death sentence,” said Darlene's husband, Dan Akers.

    The documentary took more than two years to make. Daneen and her husband worked full time on the film for a year and a half and took part-time teaching jobs while finishing the movie.

    Eyer teaches film and television, and Daneen teaches English at Pacific Union College in Northern California.

    Toward the end of production, they hit a roadblock when Darlene took a turn for the worse.

    “She hit the depths and we didn't want to leave people there,” Daneen said.

    But her mother pulled through with considerable help from a little Tibetan spaniel named Leo.

    Some days she just lay in bed and pet Leo.

    “On bad days, he gave me a reason to get out of bed because he needed to go out for a walk,” Darlene said.

    Since then Darlene has discovered ways to cope, such as meditation.

    “My line is, 'I traded medication for meditation,' and that was something I would not have been open to before this happened to me,” Darlene said.

    “Hearing these stories shows people with the same condition they're not alone. They can see what worked for others and that there's hope,” Daneen said.

    The 72-minute film debuted last month at the Folino Theater at Chapman University in Orange County.