Shaky hands, steady voice: Rosemount woman fights disease and writes children's books

By Muna Hassan - Sun Newspapers

Published: Thursday, November 4, 2010 9:09 AM CDT

For many people, being diagnosed with a long-term disease takes a long time to accept. Some never do.

Eleven years ago, Karen Frigstad was diagnosed with Friedreich's Ataxia, a disease that impacts functions of the brain, affecting coordination of body parts. Her ataxia manifests itself in the form of shaky hands, impaired speech and trouble with her balance. Since being diagnosed, Frigstad has become passionate about raising awareness about ataxia so the disease can someday be treatable.

"You just have to put one foot in front of the other, and then you don't stop," said Frigstad. "You don't make decisions out of fear, and you don't let it ruin your life."

That's not to say there haven't been tough times. Frigstad recalls moments, before she used a walker to get around, when people would make harsh comments about her movements without knowing she was disabled.

There are still times when Frigstad finds herself unable to do what she wants to accomplish, including cooking dinner for her family and walking up the stairs in their home.

Since being diagnosed with ataxia at age 21, Frigstad has become involved with different groups in the fight against the brain disease. One of the organizations Frigstad encountered in the early stages of her diagnosis was the Bob Allison Ataxia Research Center at the University of Minnesota.

In 2002, Frigstad, and her husband, Todd, along with other family members, established a fundraiser to collect money and raise awareness about ataxia.

The first annual Karen's Hope Ataxia Benefit - a golf tournament, silent auction and charity dinner - raised more than $29,000. With the success of the event, the Board of Directors at BAARC asked Frigstad to become a board member in 2003.

Karen's Hope had its ninth annual golf tournament fundraising event in June, bringing the total amount of money raised for research to more than $500,000.

While becoming more involved with the fight against ataxia, Frigstad was creating a life of her own.

In 2003, she gave birth to twin girls, Julia and Anna, and in 2006, Jack was born.

Frigstad states it's been hard work but declares she couldn't have done any of the things she accomplished without the support of her family, especially her husband.

"None of this would work if he wasn't so understanding and picked up the slack," Frigstad said.

In June, she released her first children's book, "The Princess Hair," a story that draws from real-life events from Frigstad and her family.

Frigstad uses her children's names in her stories and gives the credit to them for the ideas she includes in her narratives.

"The kids give me so much to write about," Frigstad said.

Now that her first book has been published, Frigstad is both excited and nervous about her first book signing.

"It would be great to see a lot of people come out and sell 200 books, but to sign 200 books..." Frigstad trailed off. "With the hand tremor, it would be daunting."

Frigstad will host two upcoming book signings: 5-7 p.m. Thursday, Nov. 11, and 10 a.m. to 2 p.m. Saturday, Nov. 13, at Jewelry Heaven, 14113 Galaxy Ave., Apple Valley.

Frigstad and her family live in Rosemount. She is currently working on a new stories and plans to continue writing and publishing children's books in the future.

www.mnsun.com/articles/2010/11/04/rosemount/news/rm04author.txt