Taking steps for those who can't
ALS Walk and Rally is Sunday

By Amy Hillenburg | ahillenb@reportert.com
Monday September 18, 2006



Amy Hicks, the founder of Well Wishers, didn't expect to be involved with the ALS support group and fundraising effort for Morgan County and beyond.

Like many people touched by Amyotrophic Lateral Sclerosis (ALS), known as Lou Gehrig's Disease, she was taken by surprise when her aunt, Louise Kent, was diagnosed with the disease.

Kent died of ALS in September of 2003. Hicks said just as she began learning about the paralyzing and debilitating effects of ALS, a friend, Barb Carter, had a husband who was diagnosed with it.

In 2004, 121 walkers traveled to Carmel for an ALS Walk. Hicks said it occurred to her that the local organization could just as easily stage a walk in Martinsville. Hicks and Carter did just that in 2005. Although it rained most of the day, walkers still turned out with family members, friends and their umbrellas.

They formed the Artesian Well Wishers as a non-profit, volunteer health services organization, creating a committee and governing volunteer board.

Hicks said Well Wishers have connected with many more ALS-affected families.

They are having their second ALS Walk & Rally Sunday, Sept. 24, at Harman-Becker Automotive Systems' outdoor facility in Martinsville. Hicks said this year's Gold Sponsors are Harman-Becker, WCBK Radio and Forkey's Restaurant, all in Martinsville. Registration is from noon to 1:45 p.m., and an ALS ceremony begins at 2 p.m. The walk will start at 2:30 p.m.

Hicks said other activities will be going on around the track beginning at 3 p.m.: horseshoe and volleyball tournaments, tug-o-war, face painting by the Murat Shriners, a performance by the Indiana Martial Arts XMA team and a moonwalk.

"Our mission is to raise as many funds as possible in support of ALS research and local patient services programs, while increasing public awareness," Hicks said. Donations can be made by mail and by telephone to "Well Wishers," c/o Amy Hicks, 1528 Ind. 252, Martinsville, IN 46151. The phone numbers are (765) 346-0345 or (317) 431-6412. You can also visit the Web site at www.alsrally.com.

Fought to the end

Sarah Costin of Martinsville watched her active mother, Cheryl Fluke, slowly deteriorate and die from ALS shortly before her 53rd birthday. Fluke was diagnosed at age 45 after breathing problems and clumsiness caused her to seek medical tests. Fluke had five children and 15 grandchildren, which kept her motivated.

At first, doctors thought her breathing difficulty was from emphysema, but she was diagnosed with ALS at the Muscular Dystrophy Association clinic in Indianapolis.

"She was still walking after that, but soon she needed braces - finally, she went to a wheelchair," Costin said. "Mom kept trying to do things and fought to live. She made my step-father (Russell) promise to keep her at home. Her mom helped with her care - we all did what we could."

Costin said only in the last two weeks of her mother's life was hospice called to help care for her. Fluke made it easy on her family, choosing not to be placed on a respirator.

Costin said she will walk for the second time in the ALS Walk & Rally. Last year, she walked with her three daughters.

"We haven't done any genetic testing to see if we might develop ALS. I don't really want to know," Costin said.

Difficult to diagnose

A diagnosis didn't come so easily for Martinsville resident Karen Bastin's mother, Lucille Callis. In her early 60s, she began to have dizziness, an unsteady gait and weakness in her left hand. She went to her general physician and then to a neurologist, but it took almost a year before she was diagnosed, Bastin said.

"After she was diagnosed, she only lived a little less than two years. To our knowledge, no one in our family has ever had ALS," Bastin said.

Callis was part of a drug study at IU Medical Center, but Bastin said she wasn't told if her drug was a placebo. It didn't stem the disease, which finally killed her by attacking the lungs and throat muscles. Like Fluke, Callis chose not to go on a respirator.

"My dad (Alfred) kept Mom at home. We all pitched in and helped because my parents lived across the street from us. My kids went over, and we also hired home health care," Bastin said. "What haunts me about ALS is that Mom was totally aware of what was going on. It was like she was trapped in a body that was shutting down. She knew exactly how the end would be."

Bastin said she plans to walk at the ALS event again this year with her immediate family members - "in honor of my mom."
http://www.reporter-times.com/?modul...00&format=html