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Family deals with devastating effects of Huntington's disease

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Huntington’s disease has robbed Scott Villwock of the ability to walk and talk as he once did, but with the help and determination of his family he continues to do what he loves in life.

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Whether it be fishing or attending his children’s sporting events, Scott continues to participate, even as the disease that has no treatment or cure continues to attack his brain.

“Scott understands what is going on around him,” said his wife, Kristi (Kilgore) Villwock. “The challenge is the communication.”

Scott recognizes people, Kristi said, but when asked a question he may answer, he may not answer or he may answer in an hour.

Scott was diagnosed with Huntington’s disease eight years ago, at age 40. His daughter, Quin, now a Forestview Middle School fifth-grader, was just 3 years old; his son, Cade, now a Nisswa Elementary School fourth-grader, was 2.

Huntington’s disease is an inherited brain disorder that typically begins in mid-life. It’s caused by a dominant gene that causes certain brain cells to deteriorate. Early symptoms may affect cognitive ability or mobility and include depression, mood swings, forgetfulness, speech impairment, clumsiness, involuntary twitching and lack of coordination.

The disease slowly diminishes a person’s ability to walk, think, talk and reason. As it progresses, concentration and short-term memory diminish and involuntary movements of the head, trunk and limbs increase.

Walking, speaking and swallowing abilities deteriorate, and eventually a person with Huntington’s disease becomes totally dependent upon others for care.

That’s where Scott is at, and it’s the reason a benefit for the Villwock family of rural Brainerd will be held Feb. 9 at Cragun’s Legacy Golf Course Clubhouse off County Road 77 in East Gull Lake.

Kristi said the first sign that something was wrong with Scott occurred when a friend who owns a hair salon said it seemed Scott was struggling to write a check after a haircut.

“I hadn’t really noticed anything. I asked if he noticed anything weird or strange and he said no,” Kristi said.

A few months later the couple was out for dinner and it was loud so Kristi couldn’t hear what Scott was saying. She tried to read his lips when she noticed his mouth was making strange, distorted movements.

The Villwocks visited doctors in Brainerd, St. Cloud and the University of Minnesota over about eight months before learning the devastating news of the Huntington’s disease diagnosis.

“We didn’t know it ran in the family. He’s the first in the family known to have it,” Kristi said. “It’s genetic.”

Scott remained self-sufficient for the first three years after his diagnosis. As the disease progressed, his slurred speech and unsteady gate led others to believe he was intoxicated, which was hard for the family.

Then, in 2007, Scott wasn’t able to drive anymore. He had to give up his business, Mobile Communications, that he operated for six years from his garage.

Last March, Scott fell and fractured his arm. He’s deteriorated quite quickly ever since.

“It went from his showering and getting dressed and making breakfast to needing help with everything,” Kristi said, noting it’s often hard for the family to go out in public with Scott amid stares from people who don’t know them and what they are going through.

While she’d seen slight declines and then plateaus in Scott’s health since his diagnosis, the deterioration in the past nearly year was shocking.

“I knew that eventually these things were going to happen, but no amount of reading can prepare you for what it’s like to live with it,” Kristi said. “And I didn’t think it would happen so fast.”

She said Quin and Cade are very well adjusted and happy, and Scott’s parents, Gary and Lola Villwock, have been a big help by taking care of Scott during the weekdays when Kristi works.

Scott needs more social interaction, Kristi said, noting he’s at every hockey practice and every game for Cade.

“When he’s home we try to keep him walking as much as possible, but we have to be right with him,” Kristi said.

If there’s one thing Kristi wants people to know, it’s that deep down Scott is the same man he’s always been.

“Please talk to him. He does understand what you’re saying,” she said. “He does have a sense of humor. He laughs. He knows what’s going on. He’s very aware.”

In fact, Scott participated in the Brainerd Jaycees Ice Fishing Extravaganza a couple of weeks ago on Gull Lake in bitterly cold and windy conditions. He hasn’t missed an extravaganza yet. He also fishes in a summer league with his brother, Mike.

“We’re really trying to keep him active,” Kristi said, noting many Huntington’s patients die not from the disease itself, but from side effects like choking, pneumonia and even suicide. So they also watch for depression.

She said she never thought she’d be on the receiving end of a benefit.

“People have just been wonderful,” Kristi said. “It’s just amazing how many people have gotten involved and wanted to help.”

But the one person she admires most is her husband, Scott.

“If there’s a hero in the whole thing, it’s him, because he’s never complained,” Kristi said through tears. “He’s never bitter or angry. He never asks, ‘Why me.’ He’s always been thoughtful and kind. That’s the amazing thing, he just goes with the flow.”

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