Multiple sclerosis patient not letting disease slow her down
55-year-old using art, grandchildren, exercise to help fight symptoms
During a recent 35-minute workout, Sue Kapfer seemed a typical healthy 55-year-old.
She was in good humor, teasing her personal trainer, Becky Bridson, that she was “punishing” her with 12-pound weights. She compared herself to the “Karate Kid” while doing leg lifts.
But the Lawrence resident isn’t typical. She is fighting multiple sclerosis, a disease that affects her central nervous system.
And she and other area residents who are living with MS are the reason for Saturday’s Multiple Sclerosis Walk in downtown Lawrence.
“MS is a complicated disease,” said Leni Salkind, co-chairwoman of the event. “The symptoms can be complex and it’s hard to diagnose. It often takes years before someone gets an accurate diagnosis.”
Before Kapfer, who managed the now-closed Natural Way store downtown, discovered she had MS in 2002, she knew for several years that something was wrong. She tried to hide the symptoms: fatigue, impaired vision and loss of coordination.
“I worked eight to 10 hours a day. I came home and mowed the lawn and cleaned the house. Those things became harder and harder,” Kapfer said.
One morning she woke up and couldn’t see colors. By that afternoon, she went temporarily blind.
“When the vision went, that’s when I knew I had to do something,” she said.
After the diagnosis, she was hesitant to take disease-modifying medication or attend support groups despite encouragement from family, friends and doctors. She credits Salkind, who has a family member with MS, for convincing her to take disease-modifying drugs.
Salkind told her, “You need to try these injections so that when they find a cure you have something left to save.”
For the past three years, Kapfer’s given herself a shot every other day. This has helped slow the disease’s progression.
She also now attends support groups with George, her husband of 36 years. There, the Kapfers learned they weren’t alone.
In 2006, 156 Douglas County residents had MS, according to the National Multiple Sclerosis Society. About 1,500 people with MS live in the area and 400,000 in the United States.
Kapfer, a mother of three and grandmother of six, has good days and bad days.
“I can’t be out there running with the kids,” she said.
She avoids the outdoors on warm days.
“I love to garden, but working outside in the summer just isn’t an option,” Kapfer said. “An hour outside and my MS symptoms are at their worst.”
Kapfer used to walk five miles every morning, but now struggles to walk down the block. She has given up countryside walks with her husband.
“It’s been just as hard on him as it has been on me,” she said.
One day, Kapfer’s young grandson asked about her parking tag for people with disabilities. After explaining that she used it to park close when she couldn’t walk well, he replied, “Oh, that’s like rock star parking.”
“That just made my whole day,” she said, teary-eyed. “So, now we call it ‘rock star parking.'”
And because of the disease, her dream of pursing art has become reality.
“What happened was I was out in the yard one day, and I tripped over this stick,” she said. “I picked it up to angrily throw. Then when I picked it up, it looked like a person and from there it just evolved.”
She now constructs “stick people” using fallen tree limbs, fabric, wire, beads and other objects. Each stick person comes with a message.
One in her home states: “At first I was afraid when he told me my vision was failing but decided that maybe it was time to start seeing things in an entirely different light.”
“So, the art has been my redemption,” Kapfer said. “It has opened up a whole new avenue.”
The Multiple Sclerosis Walk is Saturday in downtown Lawrence. Registration begins at 8 a.m. in Liberty Hall, 644 Mass., and the event begins at 9 a.m.There are two routes: a three-mile walk accessible for people with disabilities and a six-mile route through the Kansas University campus. Both include snacks and stops. There will be a raffle for prizes donated by area businesses from 8 a.m. to 9 a.m. Donations are accepted. Registration also can be made online at www.msmidamerica.org or by calling (800) 344-4867.Sixty percent of the funds will stay in eastern Kansas to provide programs and services for those with MS and 40 percent will go to national research to find a cause and a cure.Leni Salkind, co-chairwoman of the walk, hopes to surpass last year’s event, which was attended by about 200 walkers and raised $21,400.