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Fundraiser encourages dystonia awareness
by DJ Kauffman Correspondent · September 21st, 2017

Dogs4Dystonia Dog Walk organizer and East Central Iowa Corridor Dystonia Support Group Leader Sheila Killham, 46, was diagnosed with a rare, neurological muscle movement disorder called dystonia several years ago while living in Texas. She said the disease first attacked her vocal cords, then later progressed to her legs, feet, and neck. "I have Generalized and Cervical Dystonia. I have to puree all my foods and liquids are very difficult for me to swallow. I have to drink small amounts of warm water standing up and most medication needs to be very small pills or liquid. Anything bigger, I would choke and cannot swallow," she said.

According to Killham, only 300,000 men, women and children have this rare, commonly misdiagnosed disorder. "This movement disorder is ranked in the top three movement disorders, ranking Number 2 on the movement disorders between Number 1, Parkinson's; and Number 3, MS."

Killham said she was first misdiagnosed in Texas by several doctors and therapists who said she could speak if she wanted to, or she was in need of a psychiatrist because it was all in her head. "This is very common for us who face dystonia. I finally had someone diagnose me correctly and after that, my dystonia started affecting some of the other areas of my body. I would have upper eyelid twitches, then twitches in my upper right arm until the right foot started to spasm and moving out to the right and downward." It is "very painful when this happened," she explained.

After 25 years as a veterinary technician beginning in Marion, she lost her job in Texas because of dystonia. Killham said this was when she began thinking of ways to raise awareness and funds for the Dystonia Medical Research Foundation (researches cures for ALL types of Dystonia). "I started a Dogs4Dystonia Dog walk in Texas. I organized this and put it on two times before working on trying to get moved back to Iowa where my family support was at."

Three years ago, Killham was finally able to move back to Iowa with her daughter. She lives next door to her parents in Marion who help support her, especially when the dystonia symptoms worsen. "I have fallen many times with my dystonia," Killham said. And, "due to the progression of my dystonia, I get Botox injections every three months to help with the spasms in the neck and preventing the neck from pulling to the right. It also helps so I can swallow pureed meals. I use a walker as I get unsteady on my legs and feet."

Killham is hoping to raise dystonia awareness in Iowa by organizing an annual Dogs4Dystonia Dog walk here as well. This year's event is scheduled for Saturday, October 7, from 8:30 to 11:30 a.m. at Thomas Park. "I have asked for donations towards our silent auction and raffle table. We have had donations coming in from the Omaha Henry Doorley Zoo, local donations, donations for the Grout Museum, Children's Museum and so much more," she said.

Dogs4Dystonia Dog Walk events include a Silent Auction and Raffle, dog costume contests, free-will food donation table, the walk, Cedar Valley Humane Society, La Bella Pet Spa nail trims, PLUS Pup Lemonade Cones, and Last Hope Animal Rescue (with adoptable pets).

The cost for attending is $20 per adult, $12 for children 12 and under. Preregister at All of those preregistering before September 25, will receive a free t-shirt and goodie bag, Killham said. "People can come the day of and register but we cannot guarantee t-shirts."

Besides the Dogs4dystonia Dog Walk on October 7, Killham said she also hosts a local dystonia support group. The next meeting is scheduled for November 4. "We have two doctors coming to speak on DBS Implants and Botox Injections for patients. At these support group meetings, I invite medical staff, ... students who are in the medical field, and anyone who is a support group person for the people affected by it."
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