Area ALS patient is a big fundraiser in fight against her disease
By RUSS PULLEY
The Kansas City Star

Along with her father, Brandy Malicoat (left) is a caregiver for her mother, Cyndi Starke. “It really makes you realize not to take your family for granted,” Malicoat said. “You don’t have time to be mad at each other and fighting over lots of petty things.” Cyndi Starke feels blessed.

She’s living a great life. She has her dream car: an orange ’69 convertible Camaro. Her husband, Jimmy, restored the junker after buying it on eBay, and the painter custom-mixed the color to her liking, a shade called Cyndi’s High-Noon Pearl.

The Starkes have taken road trips and gone to car shows. They’ve motorcycled in the West. They’ve even ridden to the annual motorcycle rally in Sturgis, S.D., a few times.

On Saturday, Cyndi, with her Hot Rod Granny team, rode a different set of wheels, joining roughly 2,000 walkers who turned out for Walk to D’Feet ALS at Theis Park.

ALS — amyotrophic lateral sclerosis — is slowly paralyzing her. She took to the course in a motorized wheelchair as part of the national fundraising and awareness campaign for the illness.

Cyndi also was a big fundraiser for this year’s event, helping generate $24,000 in pledges to fight ALS, also known as Lou Gehrig’s disease.

The event raised $250,000, with a team supporting Robert Cram of Raytown raising the most money, $35,000.

ALS is a progressive and, ultimately, fatal disease. Cyndi, 52, walks slowly for short distances. She can no longer fasten buttons or pull zippers. She cooks, using special utensils she can still grasp, but gets burned taking pans from the oven. A couple of months ago, she gave up her car keys.

But she sees her challenge, in a way, as a gift, although “it’s scary.”

She quotes the Tim McGraw country song: “Live like you’re dying,” she said. “I’m really pretty lucky. I’m getting a chance a lot of people don’t get — to live the way you want to live before you go.”

So many people wait, she said. Wait for the kids to graduate. Wait for retirement.

“I feel blessed. I have a wonderful life, family and friends,” Cyndi said.

Dreading the day she will have to remodel her spacious home for wheelchair paths and install a lift in the bedroom, she decided that now — while she is still able — she would try to be an example. She would remind people to live like they’re dying.

When she was diagnosed in March 2006, the news surprised and shocked her family. She thought she had arthritis because she was having difficulty fastening her clothes. She went to a chiropractor, general practitioner, orthopedist and, finally, a neurologist. Doctors began to mention ALS as they examined tests, but they declined to tell her more until the diagnosis was certain.

She had never heard of the disease. She asked her husband what it was. He would say only that it was not good. She had convinced herself it would be something less. When she got the news, it was devastating.

“I’m getting scared to death of losing my hands, of losing my independence, really,” Cyndi said.

Along with a son and daughter, the Starkes joined support groups, talked to therapists, fought bouts with depression.

Brandy Malicoat, their daughter, is sharing caregiver duties with Jimmy, who owns a construction company, while raising children with her husband.

“It really makes you realize not to take your family for granted,” Malicoat said. “You don’t have time to be mad at each other and fighting over lots of petty things.”

The hardest thing, Cyndi said, is seeing her family’s pain, while in turn, they don’t want her taking on that extra burden.

In August 2006, the Starkes held a small fundraiser/birthday party, raising $1,000. Cyndi rented a Segway to ride at the 2006 walk.

Then she decided to hold her biggest birthday party ever. The family distributed fliers, sent e-mails and invited KC Wolf, the mascot for the Chiefs. They planned raffles, a silent auction and duck ponds for the children. They pitched a huge tent on their 4-acre home near Blue Springs.

On Aug. 4, hot rods lined the street in front of their house and motorcycles stood in rows. Nearly 500 people turned out — friends, relatives, people from her husband’s company and suppliers, and acquaintances from car shows and biker rallies. In three hours, they raised $24,000 for this year’s walk. The average family team raises about $2,000.

Another top family team in 2007 was Struttin’ for Scott, headed by Brad Neperud of Olathe. He is a friend of Scott Cart, 36, who has ALS. The team gathered nearly $13,000, Neperud said, using e-mail among a tight-knit group of friends to publicize Scott’s story and solicit donations.

Emily Jennings, a board member of the ALS Association’s Keith Worthington Chapter and volunteer chairwoman of this year’s walk, said the fundraiser exceeded its 2007 goal of $180,000.

The walk isn’t a 3K or 5K, like so many, but a 20-minute event geared so patients can participate.

“More of a stroll and carnival atmosphere,” Jennings said, and offering food and children’s entertainment.

Prudential Kansas City Realty, where Jennings works, has a corporate team that raised more than $20,000. Three people in that company had been affected by ALS. Jennings’ first husband died at 47, three years after being diagnosed with ALS, and this was the 10th walk she participated in.

She said that rather than withdrawing, many ALS patients try to make a difference.

“It was a very horrible, horrible thing to go through,” Jennings said. “But so many ALS patients are like that, it’s amazing to see them.”

Cyndi hopes an effective therapy or cure is on the horizon.

“I don’t think they’ll find it before I leave here, but I bet it won’t be that long,” she said. “The more money we raise, the faster it will happen.”



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About ALS
•ALS affects nerve cells, damaging their ability to carry messages from the brain to muscles. As muscles are used less and less, they lose bulk and grow weak. Eventually they are paralyzed.

•The average onset for the disease is age 55, but it can occur as early as the teens. It strikes men and women equally. Less than 10 percent of ALS cases are familial or have a hereditary component.

•About 30,000 people in the U.S. have the disease.

•Life expectancy for most people is two to five years following diagnosis, but some forms of the disease progress more slowly.

For more information, go to www.alsa-midwest.org.

http://www.kansascity.com/115/story/277025.html


To reach Russ Pulley, call 816-234-7811 or send e-mail to rpulley@kcstar.com.