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Taming Tourette's:
Family Conquers Disorder with Innovative Treatment

Story by Jeffrey Westhoff
SUNDAY STYLE - NORTHWEST HERALD Sunday, March 1, 1998

Steve Solimini, who has Tourette's syndrome, uses a hula hoop to develop left and right brain motor skills. Solimini is treating the disorder with a nonmedical approach established by the Seattle-based HANDLE Institute, which advocates exercises to strengthen the neurological system.

Silly String, Crazy Straws and Hula Hoops — these are things Steve Solimini shares with his nephew, Nick Voelker.

Solimini, of Fox River Grove, and Voelker, of Cary, don't keep the playthings for fun. The toys are tools to treat Tourette's syndrome.

Solimini and his nephew have the neurobiological disorder that causes involuntary movements and vocal outbursts. These uncontrolled reactions are called tics, which Solimini described. "You actually feel something there, it's like a tingling," he said. "It's like you have and itch, but instead of scratching you want to push on it and hurt it." But with exercises that include bouncing a rubber ball off a wall and writing in pink ink while wearing 3-D glasses, Solimini and Voelker believe they have conquered Tourette's syndrome.

"I can't even remember the last time I had a tic," said Solimini, who lives in Fox River Grove. Voelker smiled at his uncle's words. "[Nick] could never sit still like this," said his mother Terry Voelker.

Solimini and Voelker are following a non-medical approach established by the Seattle-based HANDLE (holistic Approach to Neurodevelopment and Learning Efficiency) Institute. The program was developed by the institute's founder, Judith Bluestone, based on her 30-year background in the diagnosis and treatment of neurodevelopmental problems. The HANDLE Institute treat people with Tourette's syndrome and disorders such as attention deficit disorder, dyslexia and autism as well as those who have suffered brain injury or stroke. The methodology is the same for all these problems, and Bluestone said she prefers not to dwell on the disorder's name. "The labels are there for a reason ... they tell you what you have," Bluestone said, "but the labels don't tell you what to do."

Bluestone's method identifies the foot of a client's neurodevelopmental disorder, looking for the underlying stress to the system causing the disorder. "Development is impaired when there's stress in the system," HANDLE Institute clinician Elizabeth Frishkoff said. Once the stresses have been identified, clinicians develop a program of exercises to strengthen the neurological system. "You ask, 'What does the body normally do to develop the things that aren't working right in that particular individual," Bluestone said.

During his evaluation, Solimini recalled he was asked to put on a pair of red and blue-lens 3-D glasses and describe what he saw. He saw alternating flashes of blue and red, revealing his eyes were not working in harmony. The exercise of writing in pink ink while wearing 3-D glasses strengthens the optic nerves of the eye looking through the blue lens, he said. Clients are told to stop exercising at the first sign of discomfort or lack of coordination. "We don't want to overwork systems that aren't strong yet," Frishkoff said.

Solimini, now a 37-year-old was diagnosed with Tourette's syndrome when he was 13, but the tics started at age 7 when he was in second grade. Classmates mocked him, while the nuns who taught him thought he was misbehaving. Solimini's tics included blinking, clenching his teeth, cracking his neck, snapping his arm out and grunting. He did not explode with profanities, which is a misconception about Tourette's syndrome. According to the Tourette's Syndrome Association, fewer than 15 percent of people who suffer the disorder will spontaneously curse.

Nick Voelker was diagnosed with Tourette's syndrome and attention deficit disorder when he was in first grade. He started taking the drug Clonidine when he was 6. "Doing homework with Nick was really a trauma," said his father, Ron Voelker. "A 10-minute project turned into 35 minutes of agony."

Despite his medication, Solimini's tics persisted for three decades. "I don't know how I got through the day ticcing," he said. "Not only is it distraction, but it takes so much out of you." Solimini discovered the HANDLE Institute last July when he found its home page on the Internet (www.handle.org). What he read about the nonmedical approach intrigued him. "It was just different than anything I'd ever looked at," Solimini said. "Just the whole approach to looking at the problem and addressing the problem just made sense." Solimini and his wife flew to Seattle Aug. 4 for treatment.

The HANDLE Institute's assessment is conducted in a pair of two-hour sessions, first to evaluate then to present results. Bluestone said clients are asked not to take medication before the evaluation session. "We want to meet the person, not the medication." Solimini was given a 20 minute exercise regimen to follow each morning. When his tics began to subside, he recommended the HANDLE Institute to his sister, Terry Voelker. The Voelkers took Nick to a visiting HANDLE Institute clinic in Iowa October 5. One of Nick's exercises was to suck water through a winding Crazy Straw. Despite Solimini's experience, the Voelkers were skeptical when they left the clinic. "We drove home; it was a seven-hour drive," Ron Voelker said, "and it was quiet." But the Voelkers also saw results. Shortly after starting his exercises, Nick ran into the kitchen holding his arms out. He said, "Mom, look how still I can hold my hands."

Nick's grades went up in the last quarter. The Voelkers' minivan now bears a bumper sticker that says "My child is an honor student at Prairie Grove School." "We just can't believe this system of exercises works so well," Ron Voelker said.

Bluestone founded the non-profit HANDLE Institute in 1994. She has treated thousands of people in the United States and Israel in the previous 30 years; her immediate goal at the institute was to teach others her methodology.
Only in the last year has the institute publicized its efforts. "There were a few years when I absolutely held back from announcing what I was doing," Bluestone said. "It's been pretty much a one-woman show for two years," Frishkoff said, "but now it's becoming more than that."

The institute has treated 600 clients. It has established permanent clinics in Austin, Texas, and Homer Alaska.

The price for six months of treatment at one of the permanent clinics is $800 for disorders such as Tourette's syndrome and attention deficit disorder and $1200 for more complex problems, such as autism and traumatic brain injury. Treatment at a visiting clinic is $1400, Frishkoff said. "The prices that they're charging are not gouging," said Sue Levi-Pearl, director of medical and scientific programs for the Tourette's Syndrome association. Levi-Pearl said she didn't know enough about the HANDLE Institute to comment further. But she hopes to find out more. "For people with Tourette's syndrome, for whom there is no perfect treatment, we in the national association are interested in learning more about non-traditional treatments," she said.

"It will take a bit more time before we get acknowledged," Bluestone said. She did noted that within the last four months two Seattle hospitals have referred patients to the Handle Institute. "Some medical doctors are very supportive of our program," Frishkoff said, "and it's mostly because their clients have come to us and come back to them, and they see the results," she said. What especially appeals to Solimini and the Voelkers is that Bluestone's program is designed to work without medication. "Medication can be food for some and awful for others," Bluestone said, "but usually with medicine there are side effects you don't want." "At one time I was on three medicines, and two of them were just to counterattack the side effects of the other," Solimini said. Sue Voelker said, "A week after [Nick] started the exercises we threw away his medicine."

The Handle Institute is now documenting the results of its 600 clients. Its literature claims a success rate of 90 percent. "The last word I got was that the figures were coming in closer to 96 percent," Bluestone said. Even though that may not be the final figure when the research is done, Bluestone said, "We do have a very high success rate." Asked what she means by success, Bluestone said, "For them to be not only not requiring their medication but to be functioning normally, that is a success."

It's a success Solimini claims to share. "I'm not just free of Tourette's," he said, "I can think clearer, I'm more methodical."

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