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After ALS diagnosis, Cedar Rapids native turns wellness lessons into advocacy for herself, others

Dagmar Munn shares 'simple formula for daily living' with Lou Gehrig's disease

Little Dagmar Nissen (now Munn) bounces on one of her father's trampolines at the 1954 Boston Sporting Goods Show. Behin
Little Dagmar Nissen (now Munn) bounces on one of her father’s trampolines at the 1954 Boston Sporting Goods Show. Behind her (from left) are Frank LaDue, a Sioux City native who worked for her father’s company after graduating from the University of Iowa, and her parents, Annie and George Nissen of Cedar Rapids. Munn’s father created the modern trampoline, and in her childhood, her family performed a trampoline act to promote his invention around the world. His Nissen Trampoline Co. would later become Universal Gym Equipment Corp., a leading manufacturer of exercise equipment. (Photo courtesy of Dagmar Munn)
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For nearly 30 years, Dagmar Munn was the face of health and wellness in Cedar Rapids.

She helped establish Mercy Medical Center’s Wellness Program in 1980, then four years later, created St. Luke’s Center for Health & Well-Being, where she taught classes and educated patients, staff and the community about reaching their health goals.

But for the past 10 years, the teacher has become the student, as she’s been learning to live with amyotrophic lateral sclerosis, or ALS, a progressive neurological disease that destroys nerve cells and causes disability.

It also is known as Lou Gehrig’s disease, named for the baseball Hall of Fame superstar who was diagnosed with ALS on his 36th birthday, June 19, 1939, and died June 2, 1941, just shy of his 38th birthday.

“It has no known cause, no cure and a prognosis of only two to five years,” Munn, 69, said in an email interview with The Gazette. She still can speak, but long conversations wear out her voice.

“ALS can appear in both men and women, young and old, the fit person as well as the couch potato,” she said via email.

Only about 5 to 10 percent of them have the “familial” or inherited affliction. Like the other 90 to 95 percent of cases, hers is sporadic, with “no family history at all,” she noted.

From the beginning

Fitness is in her DNA.

She’s the daughter of George Nissen, who invented the modern trampoline, and Annie Nissen, a former high-wire artist from the Netherlands who traveled with a circus in the United States. Both parents are now deceased, but in her youth, Munn traveled the world with her family’s trampoline act to promote the invention. Her father’s Nissen Trampoline Co. would later become Universal Gym Equipment Corp., a leading manufacturer of exercise equipment.

Her sister, Dian Nissen Ramirez, also is a fitness expert and a champion trampoline athlete.

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Munn, a graduate of Cedar Rapids Washington High School and the University of Iowa, earned a master’s degree in dance from Mills College in Oakland, Calif., and spent several years teaching dance and coaching gymnastics in California. She then returned to Cedar Rapids, marrying Ron Munn, her husband of 40 years, and embarking on her career in hospital-based wellness services.

Back home, she also graced the Paramount Theatre stage as an elegant ballroom dancer in eight Follies productions, and choreographed several Theatre Cedar Rapids productions.

Her husband is a kindred spirit, being a trampoline champion from Texas, who worked for her father’s company, promoting and selling the various kinds of equipment around the world. The couple have a daughter, two grandchildren and a great-grandchild, born this past summer.

In 2008, the couple moved to Green Valley, Ariz., south of Tucson, “eager to enjoy our early retirement years and all the recreational activities that Arizona is known for,” Munn said.

Everything changed two years later, when she received her diagnosis at age 59.

“I felt as if the rug had been pulled out from under me,” she said.

“My initial symptoms were a sudden feeling of overall muscle stiffness in my whole body, along with a strange weakness in my feet causing me to stumble and fall.”

As the disease progressed, her physical abilities diminished.

“Soon, I had to rely on a rollator (rolling walker) to help me balance and walk; even simple movements became a challenge to do. Gradually, my symptoms caused me to first give up cooking, then doing laundry, and finally, driving and running errands by myself. Ron willingly took on all the duties — something for which I am forever grateful,” she said.

“Four years ago, when I began experiencing difficulty speaking and swallowing liquids, I didn’t panic and give up. Instead, I chose to adapt and cope in a positive manner.

“I’m able to continue safely drinking beverages without fear of choking by adding a thickening powder to my drink. In my quest to not lose the use of my voice, I’ve learned vocal techniques used by actors and singers, such as diaphragmatic speaking and breathing.”

Advocacy

Never one to give up or get down, Munn soon drew upon her past to help map out her future.

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“In the days and weeks following my diagnosis, my 28 years of training in wellness kicked in, and I challenged myself to be both teacher and student. I created a routine of modified exercises, focused on keeping a positive attitude, and found ways to stay involved in social activities to avoid the feelings of isolation and depression that so many ALS patients experience,” she said.

She also needed to learn about the disease.

“This was still several years before the ALS Ice Bucket Challenge in 2014, so hardly anyone, including me, knew what ALS was,” she said. “I began researching to learn as much as I could about ALS, and noticed that most of the information focused on the adaptive equipment to help with mobility, breathing or communication.

“Very little was said about how to mentally cope with change or loss and how to use mind-body techniques to help build emotional resilience and a positive mindset. That’s when I knew I had something to offer to my fellow ALS patients, their caregivers and family,” she said.

In the past decade, she has written a book about her first year living with ALS, started her ALS and Wellness blog, has been invited to speak at ALS-related events, and now writes a weekly online column for ALS News Today.

“Throughout, I share a simple formula for daily living, based on the wellness principles I once taught to others,” she said. “I share how I’m trying to live a balanced wellness life — while living with ALS. ...

“ALS caused me to enter a new chapter in my life. I don’t dwell on the past; just savor the great memories and know that the most important moment is right ‘now.’

“Each patient experiences a different ALS journey; symptoms and rate of progression can vary. But my advice for others is, no matter what health challenges you face, keep friends and family close, tap into your resourcefulness and focus on one day at a time.”

Comments: (319) 368-8508; diana.nollen@thegazette.com

More information

• Resource: ALS News Today at alsnewstoday.com/

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• Living Well with ALS: Dagmar Munn’s weekly column in alsnewstoday.com/category/living-well-with-als/

• Blog: Follow Munn’s ALS and Wellness blog at alsandwellness.blogspot.com/2015/01/welcome.html

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