Morning Sun
  • ‘I have my life back’

  • Kelly Chancey, Pittsburg, feels a little self-conscious when she says things like “I have my life back.”

    “Everything I say feels cheesy,” Chancey said. “But it’s true.”

    What’s true is that Chancey has primary dystonia, a genetic disease that causes voluntary muscles to tighten and contract uncontrollably.

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  • Kelly Chancey, Pittsburg, feels a little self-conscious when she says things like “I have my life back.”
    “Everything I say feels cheesy,” Chancey said. “But it’s true.”
    What’s true is that Chancey has primary dystonia, a genetic disease that causes voluntary muscles to tighten and contract uncontrollably.
    What’s true is that her dystonia was so bad, it sent her to the emergency room several times.
    What’s true is that Chancey underwent brain surgery with a yearlong recovery period — a surgery that doctors aren’t sure why it works — to come out the other side the same way she was before her disease took control of her life.
    What’s true is that a few things: faith, yoga, and family, have helped her through the hard times to the good times on the other side of the surgery.
    Diagnosis and Progression
    At age 18, Kelly Chancey got the diagnosis of dystonia. It wasn’t the biggest shock in the world.
    Primary dystonia is a genetic disease, and her grandmother, uncle and father all have some form of dystonia.
    Her grandmother has dystonia of the eyes, hands and vocal chords. Her uncle has dystonia in the trunk and neck.
    As a 23-year-old, Chancey lived on her own in Kansas City, Kan. She had graduated college and was working full-time at a homeless shelter for teenagers.
    “Before 23, my life was very normal and very fulfilling. I was no different than any other young adult,” Chancey said.
    Kelly’s dystonia seemed to be manageable for a while.
    “What typically happens is the fifth year, the symptoms level out,” she said. “In my case, the first five years, the only symptoms were in my hand. In year six, I started losing things pretty rapidly.”
    Soon, Chancey began a rapid onset of dystonia throughout her body. Within a year, she had very repetitive, very painful spasms all over her body.
    Soon, she had to quit her job. Physically, It got to the point that she had to walk completely bow-legged, because the muscles in her legs contracted, pulling her feet inward.
    “It’s a disease that, the way it works is your brain sends signals to the muscles to move all the time,” Chancey said. “It’s similar to Parkinson’s. The difference is that Parkinson’s is the voluntary and involuntary muscles. Dystonia is only the voluntary muscles.”
    Her dystonia continued to worsen. Her family had to put in a foam head board, because Chancey was constantly hitting her head on the wall behind her.
    “Michael J. Fox described Parkinson’s as a divorce of the brain and the body,” Chancey said. “That’s a pretty accurate description of what it’s like. Your brain is telling your body to do things you don’t want it to do.”
    Page 2 of 4 - The dystonia just worsened, despite a seemingly endless stream of medicines to try to solve the symptoms.
    “Toward the end, it was awful. I couldn’t feed myself well. I couldn’t walk a few feet without catching my breath,” she said. “It was constant cardio all the time. And there were so many medicines, I was nauseous all the time. I had all this movement, and I was needing calories, then having to eat, and not being able to because of the nausea. I couldn’t work, I couldn’t eat, I couldn’t do anything.”
    Surgery and Recovery
    “I had no choice [for surgery]. Ultimately, it was a life of misery. I couldn’t eat or walk. Yeah, I chose it, but what are you going to do?” Chancey said.
    Chancey’s neurologist, since the original diagnosis, was Dr. Richard Dubinsky. Dubinsky and Chancey began the long process of pursuing deep brain stimulation (DBS) surgery.
    DBS has only been approved by the Food and Drug Administration as a treatment since 1997, and as a treatment for dystonia since 2003. In essence, the surgery involves the implantation of two “brain pacemakers.”
    “It’s regulated by the FDA, and you have to prove your quality of life was so low, and you qualify by going through all the experimental medicines,” Chancey said. “There are certain qualifications you have to go through before surgery. For me, it was a pretty clear case.”
    Her dystonia got so bad, that Chancey was sent to the emergency room because she was having trouble breathing. It wouldn’t be the last time, but it did prompt Dubinsky to see if the surgery could be moved up.
    To prepare for the surgery, Chancey had to shave her head. That gave her the opportunity to do something she’d wanted to do for some time before the hair had to go: dreadlock her hair.
    But soon the hair was gone, and in September 2011, Chancey had the surgery.
    “It’s usually done in four surgeries. you do one side of the brain, then the other. You put one pacemaker in, then the other. They typically wake the patient up during the surgery, too,” Chancey said. “They couldn’t do that with me because they expected that I would break the halo if they did.”
    Because of the intricate nature of the surgery, the pacemakers were put in a week or two afterward.
    “But you have to wait a month to turn the system on, because you don’t want infections before you turn it on. They want your body to be totally healed before you turn it on,” Chancey said.
    Her dystonia didn’t get the message. Although the pacemakers were in her body, she proceeded to get worse. She soon needed changes in her medicine, and then began having issues with those medicines.
    Page 3 of 4 - She ended up back in the emergency room again before they pacemakers wer turned on.
    Eventually, though, the pacemakers were activated. Although the surgery was done by Dr. Jules Nazarro at the University of Kansas Medical Center, Chancey had to move in with her father in Pittsburg through the yearlong recovery.
    “Recovery is no small feat. Coming off all the medicine was hard,” she said. “The physical therapy at first was three days a week. Ryan Loughmiller was my physical therapist. I would say he’s one of the reasons I’m doing as well as I am. So all the work, and all the waiting, now, I wouldn’t trade it for the world.”
    The recovery involves a process known as neuroplasticity, which involves “rewiring” the brain to find workarounds. For instance, Chancey had to teach herself to walk flat footed again rather than on the edges of her feet. The way she tricked her brain into that was to run. Running worked, and eventually that was used to retrain her brain and body.
    If dystonia was like divorce of brain and body, Chancey was putting hers through couples counseling, she joked.
    Health and Healing
    Strangely, one of the few things that helped before the surgery was yoga. Chancey was always into a more holistic approach, but yoga provided something that helped even through the dystonia.
    “Yoga was one of the things that got me through,” she said. “My muscles were so tense and spastic that doing yoga helped alleviate the pain. So if I could stretch a little bit, it was OK.”
    Now she does it more often. Chancey is going through three yoga classes a week. And she’s got a few plans for the future. One of those plans is to go through a certified yoga teacher program, what she calls “yoga school.” She recently applied to the program.
    “I can see myself working yoga classes for people with disabilities, but who knows,” she said. “You don’t want to plan too much out. Let God plan the rest. You can only plan so far.”
    God is in those plans for Chancey. She said that her faith was boiled down to its essence during the worst of the dystonia. Chancey wants to write a memoir of her story, with chapters from her perspective and from the perspective of those around her, who saw what she was going through.
    “All I had was my faith. It inspired me to want to write,” Chancey said. [Faith] was a major part of my story. I had a lot of people praying for me, and a lot of people supporting me... Faith helped me see beyond my circumstances. Yes, this is hard. It’s right here in front of me, and it’s ugly. I knew God had plans for me. I know there is more to my story, and I’m going to use it for God.”
    Page 4 of 4 - Chancey gave her testimony on Sunday to Countryside Christian Church, where she attends. Her story was paralleled by associate minister Vance Russell with the story found in Mark 5:21-34, in which a woman who “had suffered many things of many physicians, and had spent all that she had, and was nothing bettered, but rather grew worse,” touched the cloak of Jesus and was healed.
    In addition to her faith, Chancey said her mother in Kansas City, Kan., and her father in Pittsburg, as well as her two sisters (one in Columbia, Mo., and the other in Kansas City), were monumental to her recovery.
    “My mom has been my emotional support system in a lot of ways. She is probably the one I talk to the most. There isn’t a lot that can shake her up,” Chancey said. “My dad is more of a practical role. He made sure I ate, even when I didn’t want to or I forgot to, or medicines made it hard to.”
    Nearly a year and a half after the surgery, and Chancey is walking normally, driving, and doing all the things she did before the dystonia took over her life.
    “[Dystonia] changed every aspect of my life. It’s been one of the struggles, but also one of the good things. It changed my life, it changed my life goals, it changed my relationships, it changed everything,” Chancey said. “But I feel like I’m making it now, and I’m doing what I’m supposed to be doing.”
    Andrew Nash can be reached at andrew.nash@morningsun.net or by calling 231-2600 ext. 140.

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