Yolanda Treiguts has days when she’s exhausted.
“I don’t try to fight it physically or emotionally. I’ll tell my husband it’s going to be a slow day,” said Treiguts, 52, who was diagnosed with multiple sclerosis in 1979.
The disease, which can affect the nervous system, spinal cord and brain stem, may have very little impact on one person but may be extremely painful and debilitating for another, Treiguts said. The cause of the disease is unknown, and there is no cure. To deal with the effects and uncertainties of MS, Treiguts joined a support group in LaGrange in 1982.
“I helped run that group, get speakers and volunteers,” said Treiguts, of Oakbrook Terrace. “I had pretty definite ideas about how a group would work best.”
When she formed the South Cook MS Support Group in 1984, there were only four others serving the Chicago metropolitan area. Since then, more than 100 MS support groups have formed in Illinois, and the South Cook group has grown from seven to more than 100 members.
At the first meeting, the group decided to be positive, said Treiguts, who lived in Palos Hills at the time.
“We wanted (to find) ways to graciously live our lives. Our group is very education- and speaker-oriented. We try to get people the very best information out there,” she said, on topics such as new drugs and advances in research.
While meetings draw between 40 and 100 people (meetings are free, and members pay no dues), more than 300 were present in 1992 when a representative from the U.S. Food and Drug Administration discussed a newly approved drug.
“If we do have a controversial speaker, we’ll have someone else balance the presentation so both sides can be heard,” Treiguts said.
Member Linda Stearns, 50, of Oak Lawn joined the group 12 years ago, soon after being diagnosed with MS. “I needed someone to talk to. I was in so much pain, I couldn’t breathe,” Stearns said.
Stearns enjoys the monthly meetings for camaraderie as well as the presentations.
“It’s (a place) where someone understands you when you say your body has pins or needles or your legs (feel as if they are) on fire,” Stearns said.
Of 67 support groups in northern Illinois, Treiguts’ group is the largest. They are affiliates of the Chicago Greater-Illinois Chapter of the National Multiple Sclerosis Society, which estimates that as many as 350,000 people have MS, about 13,000 in northern and central Illinois alone.
“Every support group is different,” said Mary Ruth Herbers, the chapter’s director of client services. “They provide emotional support. People share stories, ideas and strategies for coping with the ups and downs that come with MS.”
“There are a lot of issues they’re dealing with, and they’re depressed,” Treiguts said of people who have MS. “It’s not a terminal illness, it’s a chronic illness. Depression is a real big part of MS.”
The disease also seems to strike during the prime of life, often between the early 20s and late 40s, Treiguts explained.
“You’re starting out or in the middle of making it,” Treiguts said. It’s a tough time for people to deal with the illness, she said, because they have been looking forward to so much in their lives. “People with MS are very hard on themselves,” she said, adding that they feel they are somehow responsible for getting the disease.
Burbank resident Ken Mauge, 38, was diagnosed with MS at 20. A support group member for 13 years, Mauge has worked with Treiguts for three years, helping with meeting setup and refreshments.
“I get a good feeling from the meetings. I show up every month. It’s part of my life,” said Mauge, who also helps the Chicago MS chapter coordinate a fundraiser, Ride to the Rock, a bike tour from Naperville to Ottawa (next year’s tour is on April 19).
Pat Duray, 43, of Oak Forest was diagnosed with MS 14 years ago.
“For the first two years of my daughter’s life, I was in and out of the hospital,” she said. “I belonged to a support group at Northwestern Memorial Hospital, but the people there were severely affected. I couldn’t think of myself at 26 being (in a wheelchair).”
Chicago public school teacher Flora Mortell, 53, of Burbank was diagnosed with MS 25 years ago.
“I did everything I could to camouflage it. I didn’t want anything to do with a support group,” Mortell said.
But after she learned from a newspaper that a nurse would be speaking about a new medication and research discoveries, she attended a meeting.
“A few months later, I got a letter from Yolanda,” she said. “It really touched me.”
Mortell has attended the group’s monthly meetings for 12 years.
“Family and friends don’t know how it feels. Unless you have MS, you can’t comprehend the fatigue level,” Mortell said. “Group members can empathize even if they don’t have the same symptoms. They know the frustrations you feel, and I think the psychological support is tremendous.”
Treiguts also chairs several of the chapter’s committees, including a national task force that is writing a manual for guiding and managing MS self-help groups. Treiguts said the support group also offers help to spouses, caregivers and close friends. “We call it Significant Others,” Treiguts said of the group that meets separately, after sitting in on the regular monthly meeting. “We want them to attend. They tend to be a lot angrier than those with MS.”
“Yolanda is always full of ideas, energy, enthusiasm,” said the chapter’s Herbers. “She’s the driving force in our Law Day Program, which provides free legal counseling one day a year for people with MS.”
“You’re always on a tightrope,” Treiguts added, “feeling good one day, not so hot the next. But if you start to feel sorry for yourself, that’s very bad. It’s a self-fulfilling prophecy. There are certainly worse things in life.”
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The support group meets at 7 p.m. on the second Monday of the month at the Orland Park Christian Reformed Church, 7500 W. Sycamore Dr. For information about the South Cook MS Support Group, call 630-834-3930. For information on other MS groups, call 1-800-FIGHT-MS, or visit their web site at www.msillinois.org.
