Salina As a child, Kathy Johnston never looked at her reflection in a glass door.
She also avoided eye contact with other people — she thought she could see the pity in their eyes.
“I didn’t want to be pitied,” said the 39-year-old resident of Kirwin, a Phillips County town.
In 1978, when the former Kathy Allen was just 9, her foot began to turn inward.
She began to have muscle spasms that often doubled her over with pain. At first, doctors thought her condition was psychosomatic, an attention-getting device.
It took three years for doctors to diagnose her condition as dystonia, a neurological movement disorder in which sustained muscle contractions cause twisting and repetitive movements or abnormal postures.
Because of damage done by the dystonia, Kathy developed scoliosis of the spine, which caused a large C-curve in her spine.
The pain from both conditions made Kathy a virtual invalid for the next 17 years — confined to a wheelchair most of the time and a slave to numerous medications.
Although she married at 21 and gave birth to two children, Kathy knew the constant pain and uncontrollable spasms would always prevent her from having a normal life.
Then, in 2006, she discovered deep brain stimulation.
Developed in France in 1987, deep brain stimulation was an experimental surgery designed to alleviate symptoms of Parkinson’s disease. It was approved by the Food and Drug Administration for treatment of dystonia in 2003.
Through thin electrodes placed on key areas of the brain and controlled by a battery installed in the patient’s upper chest — a virtual brain pacemaker — deep brain stimulation can send electric impulses into the brain to help control tremors and pain.
After researching the procedure, Kathy decided it was her best chance for a pain-free life.
“I had deteriorated to the point that medication wasn’t working for me anymore,” she said. “I felt I had no other option.”
Kathy had a more vital reason for having brain surgery. While her daughter Janet, 14, was symptom free, her son, Jon-Patrick, 12, had tremors in his hands — an early sign of dystonia.
“If this could work for me, there was a chance he would have a normal, happy life when he got dystonia,” Kathy said.
To help alleviate Kathy’s scoliosis, two stainless steel rods were placed along both sides of her spine and fused into her vertebrae — 40 fusions in all, Kathy said. She had another 16 surgeries during her teenage years.
Prognosis for leading a normal life with dystonia was grim, but Kathy refused to let her condition get her down. After high school, Kathy enrolled at the University of Maine as a communications major.
In 1990, she met her future husband, Rich Johnston, who was studying for a degree in criminal justice with hopes of becoming a police officer. Kathy was working as a secretary at one of the university’s residence halls.
Kathy might have walked stiffly with a cane, used a wheelchair often and was subject to muscle spasms, but Rich said he was attracted to her from the moment they met.
“I thought she was the strongest, most determined person I’d ever met, wrapped in a fragile package,” said Rich, 39. Rich often could be seen carrying Kathy on his back. It was an easier way to cross campus, and besides, Kathy weighed under 90 pounds at the time.
“I’m at 100 pounds now, and that’s healthy for me,” Kathy said.
The couple were married in May 1991. It wasn’t long before the Johnston’s were faced with another important decision — should they have children? Kathy didn’t want to pass a genetic defect onto her kids.
Even though there was some risk involved, the Johnstons decided to have children. During each of her pregnancies, Kathy said, she stopped her pain and muscle relaxant medications. “That was horrific,” she said.
After working as a police officer and then for the U.S. Border Patrol, Rich joined the U.S. Fish and Wildlife Service, which transferred him to jobs in Montana and Houston. While in the Houston area, Kathy discovered she was living near one of the world’s experts on dystonia.
Neurologist Dr. Joseph Jankovic, world-renowned for his research into dystonia, thought Kathy would be a prime candidate for deep brain stimulation.
As it happened, neurosurgeon Dr. Richard Simpson, a pioneer in deep brain stimulation treatment in the U.S., also happened to work in the Houston area.
The surgery was not without risk, but Kathy was willing to try anything to improve her condition.
“If there was a 5 percent chance of getting better, I had to do it,” Kathy said.
She was given a local anesthetic and remained awake during surgery so surgeons could determine the area of the brain where her tremors originated.
Kathy’s head was clamped and two holes were drilled through the top of her skull, and electrodes no bigger than dental floss were lowered into the affected areas of her brain. The electrodes were connected to a wire running behind the ear to a small impulse generator or “pacemaker” implanted under the skin below the collarbone.
Kathy had two generator devices installed a couple of weeks after the first surgery — one in her chest and one in her abdomen — for each hemisphere of her brain.
Kathy was sent home with a keypad device the size of a small television remote control to monitor the electrodes or restart them if they accidentally shut off.
Kathy’s generator units are battery-operated and must be replaced every 16 months. She has this procedure done at the Kansas University Medical Center in Kansas City, Kan., where the units are removed and replaced with new ones.
Since Kathy had deep brain stimulation surgery more than two years ago, she and her family have moved to Kirwin, where Rich works at the National Wildlife Refuge.
During the last two years, Kathy’s quality of life has improved. She substitute teaches in the Phillipsburg and Smith Center schools. Best of all, she’s tossed out all of her medications.
“I can see the world clearer now,” she said. “Dystonia used to rule every aspect of my life. I couldn’t even sit still in a chair for an hour, and now I can.”