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| Patient > Stories |
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That's the Spirit - by Debra Nelson-Hogan
Across the campus of Ball State University, students are sporting orange awareness ribbons, similar to those used to symbolize the fight against AIDs or breast cancer. The ribbons, used to symbolize the fight against RSD pain, were the brainchild of Ashley Mahoney, a sophomore and sister of Alpha Chi Omega sorority. In November, the Chi Omegas sponsored A Walk to Remember that increased RSD awareness and raised $4,000 for RSDSA.
Ashley was diagnosed with RSD in February 2002, a month after her foot mysteriously swelled and appeared purple, "Like the color of Barney," Ashley adds. Her medical ordeal was horrific, as she went from physician to physician only to hear she was a "hypochondriac college student." Never mind that Ashley was carrying 20 hours of classes and, as a musical theater major, was involved in a show. She was so angered by this attitude that she fired her physician, walked out of the office with "every piece of documentation regarding her case," and kept looking for help. A month later, a podiatrist told her he thought she had RSD.
She garnered her resources and starting researching the syndrome. "I read everything I could get my hands on," she said. Meanwhile, the RSD spread up her leg and finally to the whole right side of her body. Medical treatments continued to make things worse-sympathetic nerve block was horrible, a spinal cord stimulator gave her full body tremors. After two and a half weeks in the hospital, Ashley went home to Marietta, Georgia. "I looked like an 84-year-old woman with Parkinson's disease," she said. Her first priority was to go through a detoxification process to get rid of all the drugs in her system; her second was reclaiming and rearranging her life.
During the summer she started physical therapy to relearn to sit and hold herself up. She found that Topamax® stopped the tremors and helped Ashley get her life back. At the Mayo Clinic, she was given clonadine, and although things are still rough for her, Ashley was able to realize her dream of returning to school for the fall semester.
"It has been interesting, because my memory is rough," she explains. "I never had trouble memorizing lines and now it is harder. Sometimes I have trouble speaking and finding the right words." She also has learned to reset her priorities, accepting that a C grade is OK.
Once Ashley returned to school she told her sorority sisters she wanted to do a walk to raise awareness and the sisters pitched in. Lindsay Gillian, the community chair, pulled it all together, and more than 100 people, decked in RSD Awareness T-shirts and orange ribbons walked the mile course. Ashley says it really is neat how the awareness has grown across the campus. Once in a while she will see people she's never met with an orange ribbon pinned to their backpacks. Plus, she says, "everyone in the theater department knows all about RSD now. It has spread via e-mail and word of mouth," and garnered so much support that a variety show, Open the Curtain to your Dreams and Live, has been set for January 17. "I'm the first person in the history of Ball State to be allowed to use Pruice Hall free of charge for a fundraiser," she adds. "Everyone in the department wants to perform. It's going to be great!"
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