Resident Fights for Parkinson’s Disease Cure

Speaking in a gentle tone barely above a whisper, Culver City resident Barbara Effros describes her daily struggles with Young Onset Parkinson’s disease. Carefully cataloging the last 10 years since her diagnosis, 53-year-old Effros details a world of frequent falls that have sent her to the emergency room for concussions and various injuries, daily stiffness, fatigue and even difficulty swallowing as she has learned to live with a disease that few understand can affect the young as well as the elderly.

“When I wake up in the morning, I walk like a tin man,” Effros said. “I am totally stiff; I can barely get across the room without assistance.”  

When she was diagnosed at age 42, Effros said that there were few diagnosed cases of Young Onset Parkinson’s; in 2001, she says actor Michael J. Fox was one of the most known faces of young individuals with the illness. Now, out of all newly diagnosed cases in the U.S., approximately 15 percent have the Young Onset diagnosis, which is a classification used for people under the age of 50. Currently, 1 million people in the U.S. have Parkinson's disease.

At the time of her diagnosis, Effros’ twin children were only 8 years old. And it was her children and husband who became big motivating factors for her to overcome her daily symptoms, and become an advocate for those with neurological diseases. “I was determined to not be in a wheelchair when my children graduated high school,” she said. “The last thing I want to do is be a burden on my family.”

Galvanized by her disease and a hope for a better tomorrow for future generations, Effros began her advocacy efforts with a simple Google search on "Parkinson’s." She searched for causes, doctors who specialized in treating Parkinson’s disease and for various treatments. And in addition to information, she also found a community and met others who are young and have the same day-to-day struggles.

One major difference between a young individual who has Parkinson’s and an older one is that a younger person often has children to care for and potentially a spouse, making dealing with the day-to-day symptoms that more difficult, she said. Her family members know the effect of her symptoms very well. 

Son Jonathan Schwartz, 18, remembers a particularly frightening moment when his mother fell so hard against a mirror that she broke it. Husband David Schwartz can recall a time when a muffin sent her to the emergency room because one of the nuts inside got stuck in her throat. But even with all of that, Schwartz says Effros remains positive: "I admire my wife; she’s the most positive person I have ever met." 

Jonathan, like his mother, is determined to have a bright outlook and encourages kids who have parents with the disease to do the same. “You've got to stay positive," he said. "If you’re negative toward a parent who has Parkinson’s, it can make it worse for them.”

Effros’ early Google searches have blossomed into a blog idea, a support group at the , a book in progress on talking to your kids about illness, disability and dying, and biannual trips to Washington, D.C., to lobby senators as part of the Parkinson’s Action Network.   

“I get spurred on by people who are activists who don’t sit back and let the world happen to them, who don’t allow themselves to be defined by Parkinson’s,” said Mark Siegl, president of the Greater Los Angeles Chapter of the American Parkinson Disease Association. He met Effros at a function for Parkinson’s disease activists seven years ago. “Barbara is a perfect example of that.”

As one who holds a “bunch of energy” according to Siegl, some of Effros’ many concerns in the neurological disease community are impending cuts to health organizations in the federal budget.

Medicare and Medicaid are facing budget cuts that could impact health services for the elderly. Since fiscal year 2010-11, the National Institutes of Health has lost $322 million, which is less than 1 percent of its $30.8 billion operating budget, according to Renata Miles, a spokeswoman for the NIH. While the decrease in federal funds is currently slight for the NIH—fiscal year 2012 numbers have not been released, per Miles—Effros believes that more is always better.

“The head of NIH said in 2001 that if they would’ve had sufficient funding they would have had a cure for Parkinson’s,” Effros said. “I believe if they would’ve had the funds, they would have had a cure.”

When she isn’t rallying support for the Parkinson’s Action Network, Effros is busy managing the tax affairs of locals as the owner of Effros Tax & Consulting Inc. in Culver City, and spending time with her husband and Jonathan when he comes home on the weekends from Cal State Northridge. On Sunday, she will be walking with the Parkinson’s Beach Brigade along the Santa Monica bluffs to raise awareness about the disease  and to get in a little exercise. 

Until a cure is found, she'll be busy impacting the world around her, including daughter Rebecca. 

“In my communications class last semester, we did a project on nonprofit organizations, and I did mine on the Michael J. Fox Foundation. It helped me understand what my mom goes through so much more,” Rebecca Schwartz said. “I could help my group more because of my mom’s experience. She’s really strong.

“She’s a fighter.”