Blue Springs woman finds strength in fight against ALS
By Debbie Coleman-topi | deborah.topi@examiner.net

Cyndi Starke can no longer cut the food on her plate or put a barrette in her hair. The 52-year-old's fight with ALS has even rendered her mostly wheelchair bound. Although the disease is slowly chipping at her independence, the Blue Springs woman said she's never felt so alive.

"I really feel pretty lucky because I'm getting a chance to live like I'm dying," she said. "I get the chance to tell everybody how much I love them. We all should live like that. Because none of us are getting off this earth alive."

Until two years ago, when she was diagnosed with the neurological disorder, Starke had always wondered about her purpose in life. She married Jim 26 years ago and they two raised two children, Brandy, 24, and Cayle, 29. The couple enjoyed riding Harley-Davidson motorcycles and Jim built and restored hot rods; they attended many car shows. Just before she was diagnosed with the crippling disease, Jim built her a 1969 Camaro. Knowing she'll never be able to drive the car, she's considering selling it.

Although researchers now know more than ever before about ALS, also known as Lou Gehrig's Disease, the cause is still a mystery. The progressive neurodegenerative disease is fatal. Several variations of the disease are present and some seem to run in families. But Starke's family has no history of the disease. She has the type that started with loss of function and pain in the limbs. She first noticed symptoms in her right arm, which now is paralyzed.

Starke isn't satisfied with now knowing why or how she contracted ALS. And she doesn't believe the other 30,000 people throughout the country who are living with the disease should be, either. That's where her purpose comes in. Starke has decided to dedicate the rest of her time on earth to raising money to be used in research, hopefully to discover treatments and a cure. In the process, she hopes to raise awareness of ALS.

Her latest efforts raised more than $20,000 toward the cause. Family, friends and neighbors hosted a birthday party for Starke, but made the affair a fundraiser. The Aug. 4 event, held at the couple's south Blue Springs home, attracted about 400 supporters and offered a lot more than cake and ice cream. Local businesses donated gift certificates and items that were raffled and auctioned. The Kansas City Chiefs mascot, KC Wolf, made an appearance. The event included car and motorcycle shows.

Sheila Carver, a friend who helped organize the fundraiser, said Cyndi still has a lot to offer despite the limitations forced on her by the disease.

"Her spirit is so strong," she said, "just to have the ambition to put this together."

Cyndi's daughter, Brandy, who cares for her mother several times a week, agreed that her mom displays a lot of spunk.

"There are a lot of things I'd rather do for her, but she's not ready," she said. Brandy added that it's hard to watch her mom deteriorate.

"It's the hardest thing I've ever done in my life. She's my best friend."

The disease has brought out her competitive spirit - one that's never before been very strong.

She's formed a team to help in her fundraising efforts, and is competing with at least 15 other Kansas City area teams to be named the top fundraiser in the fight. The teams compete until the day of the ALS benefit walk on Sept. 15. Cyndi will participate in this year's walk by riding in her electric-powered wheelchair. Participants gather pledges for walking in the event, which begins at 10 a.m. at Theis Park, 47th and Oak streets, Kansas City. Her team will wear T-shirts with the logo "Hot Rod Granny." For more information, visit www.alsa-midwest.org.

Brandy, her mom's team captain, said she's glad to be using her time and energy helping her mom organize fundraisers. But she admits that help in the form of treatments and a cure may not happen in time for her mom.

She said, "This is for somebody else's mom."

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