December 4, 2003
By Debra Carr-Elsing
The Capital Times
"Our greatest glory is not in never falling, but in rising up every
time we fall."
-- Ralph Waldo Emerson
Daily challenges for Jane Schmieding are not unlike the majestic mountain ranges that took her breath away on a recent trip to Alaska -- they're big and seemingly insurmountable at times.
But, like the piece of glacier that melted in her hand on that vacation, the daunting tasks that arise in her life are tackled one by one, and then they disappear.
"I usually find a way to do anything that I really want to do," she says.
These accomplishments range from simply maneuvering around the house on days when her legs don't want to cooperate to jumping out of an airplane at an elevation of 15,000 feet -- on better days -- to experience the thrill of a free-fall skydive.
A few months ago, Schmieding tackled white-water rafting on the Arkansas River in Colorado. On that same trip, she challenged her body through a ropes fitness course that resembles mountain climbing with a safety line and clip 40 feet above the ground.
"My legs don't always work very well," says Schmieding, 53. "I usually need a walker to get around."
On days when the distance is greater than her stamina, she has an electric scooter.
For more than 25 years, Schmieding, who lives in Madison with her husband Steve, has lived a fulfilling and relatively normal life, under a diagnosis of multiple sclerosis, which is a chronic, sometimes disabling disease of the central nervous system.
"Multiple sclerosis varies a lot from person to person," says Dr. Robert Graebner, a neurologist with the Dean Health System.
Symptoms may be mild, such as numbness in the limbs, or severe, such as paralysis or loss of vision.
"The exact manifestations of the disease depend on where MS lesions or plaques show up in the brain, and that's a random thing," Graebner says.
Most people with MS are diagnosed in their 20s and 30s, but, increasingly, symptoms are showing up later in life, and they can mimic symptoms of aging disorders.
"I was 28 in 1978 when MS was first suspected," Schmieding recalls. "Two years later, I had my first child, and everything worked out fine."
Then came a roller coaster ride of remissions and severe MS attacks. A second child was born, and Schmieding started to use adaptive equipment to keep her going. She refuses to let the disorder prevent her from leading an adventure-filled life.
Last year, for example, she vacationed in Belize in Central America, and when she isn't on the road, Schmieding works at Midwest Decorative Stone & Landscape Supply, 6149 McKee Road.
About five years ago, she won a distinguished service award from the Madison school district for her volunteer work at Orchard Ridge Elementary. She also helps with newly diagnosed MS patients at University Hospital & Clinics and does similar volunteer work with the Wisconsin Chapter of the National Multiple Sclerosis Society.
"Jane is an inspiration to anyone with a disability because the challenge of multiple sclerosis is something that she works to overcome every day," says Colleen Kalt, president and CEO of the state MS chapter.
To help reach her goals, Schmieding attends the Adapted Fitness and Personal Training class at the University of Wisconsin-Madison. Currently, she's working on strengthening her back so she can sit straighter in a kayak.
She credits her "I can do anything" attitude to Tim Gattenby, instructor of the UW class, which is geared toward people with physical or developmental disabilities.
Schmieding also participates in outdoor experiences provided by Adventures Within Inc., a Denver-based nonprofit organization that provides confidence-building physical and mental challenges for people with MS.
These programs of canoeing, horseback riding, rock climbing and whitewater rafting typically are held at the Breckenridge (Colo.) Outdoor Education Center in cooperation with the Colorado Outward Bound School.
"My optimistic attitude didn't happen overnight. It started years ago, and I kept going in that healthy direction even when it was hard to move my feet," Schmieding says.
There have been other symptoms of MS along the way, too, including stiffness, fatigue and muscle spasms, she says.
"Multiple sclerosis is not a death sentence, and it's not the end of the world," Schmieding says.
"My physical ability has gone down in the last two years, but I can still do a lot of things very well, and I'm having more fun than I ever thought possible."
Schmieding is not alone. MS is prevalent in Wisconsin, where the incidence rate is one in every 500 people. By comparison, the MS rate in Texas is one in every 10,000.
"We really don't know why Wisconsin has such a high incidence rate," says Kalt of the MS state chapter. "One theory is that many people from Wisconsin have ancestry that came from northern Europe, where multiple sclerosis was first discovered."
Besides that, MS seems to be more prominent in countries far away from the equator. Warmer climates have fewer cases.
"Right now, the challenge in Wisconsin is to make sure that people are aware of what a medical issue this is for people here," Kalt says.
Of people in the Badger State diagnosed with MS, 72 percent are women, she adds.
In fact, all autoimmune diseases are more common in women.
"So one of the things we're focusing on is gender research and trying to find out why men and women have multiple sclerosis very differently," Kalt says.
The good news is that women like Schmieding are making significant contributions and giving hope to other people living with MS.
"Not every patient with MS needs to be a skydiver in order to fulfill their life. That's a very individual kind of thing," Graebner says. "But I do encourage everybody to look at their options and to not feel limited because they happen to have a health problem."
A "get up and go" attitude can have enormous health benefits, he adds.
And there's more good news when it comes to treatment options.
"In recent years, advances in research have put several new drugs on the market that work on the immune system and reduce the frequency of MS attacks," Graebner says.
These drugs, which include Copaxone, also slow the progression of MS and improve a patient's long-term outlook.
"Twenty years ago, there really were no drugs that we could use for maintenance therapy for patients with MS," Graebner says.
Another recent development is the use of Novantrone, a cancer chemotherapy drug, to reduce the relapse rate in patients with worsening MS symptoms.
"There's an enormous amount of MS research going on right now, and we're quite optimistic that we'll soon have even better medications," Graebner says.
Besides that, increased use of magnetic resonance imaging is helping
to improve early detection and diagnosis of MS.
Copyright © 2003, The Capital Times