'One of the lucky ones'
Wichitan with ALS has lived for 15 years -- well beyond average survival time.
BY KAREN SHIDELER
The Wichita Eagle
Mary Kay Stilwell isn't sure why she's still alive. "She's just one of the lucky ones," says her mother, Margie Zwiesler. Stilwell learned 14 years ago that she has amyotrophic lateral sclerosis, more commonly known as ALS or Lou Gehrig's disease. Her symptoms began a year or so earlier, with weakness in her hands.

"Living with the disease for 15 years is not easy," Stilwell says, her words coming slowly and with difficulty.

ALS is a terminal disease that affects nerve cells. As a result, the brain can't initiate and control muscle movement, so muscles -- including those necessary to breathe and talk -- progressively weaken.

"With each loss, there's a grieving," Stilwell says.

The average survival time for ALS patients is three to five years, but about 10 percent of patients live 10 years, and about 5 percent live 20. No one knows which group a patient will fall into, or why.

Stilwell, 44, has had speech and swallowing problems from the beginning. Her lung function is decreasing. Her doctors are telling her it's time to think seriously about a feeding tube.

But she can stand long enough to assist in her transfer from her motorized wheelchair to bed. And she still is able to use the ring finger on her right hand to type on her computer -- though not quickly, she says. E-mail allows her to stay in touch with son Daniel's teachers.

Stilwell seems to search out the joy in life. She smiles easily, takes great pride in Daniel ("a wonderful young man who's very helpful") and goes "every place" in her wheelchair.

In an interview with The Eagle nine years ago, when she was honorary co-chair of an annual golf tournament to raise funds for the ALS-Keith Worthington Chapter, Stilwell talked of how she'd been transformed from an active, athletic woman to someone dependent on the help of others.

A year and a half ago, she gave up living in her own home, and she, Daniel, 13, and two cats moved in with her parents, who started helping care for her years earlier.

Stilwell is a single mom; her other children don't live with her.

She's hardly a stay-at-home mom, though. She recently returned from a family trip to Florida, she's a regular at a family lake cabin, and she loves heading for Worlds of Fun or other destinations.

"We love to take her to concerts, because we always get front-row center," says Zwiesler.

"She just isn't going to let any grass grow under her feet."

On the Web

Mary Kay Stilwell is one of 31 people being featured this month on the Muscular Dystrophy Association's ALS Division Web site, www.als-mda.org. She is part of the "Anyone's Life Story" campaign, and her profile and photo will appear Sunday. Two other Wichitans also have been featured; read Pamela Rayer's story by clicking on May 13. Read Richard Vliet's by clicking on May 22.

Reach Karen Shideler at 316-268-6674 or kshideler@wichitaeagle.com.