MS Awareness Week March 5 – 11
by Tina Johansson
For those of us who have Multiple Sclerosis, and the loved ones who often witness our side effects firsthand: Happy MS Awareness Week.
And for those of you who are lucky enough not to have to deal with this annoying and all too often disabling neurodegenerative disease: You likely know someone, or have heard of someone who suffers from MS.
The condition which is said to affect more than 2.3 million people worldwide, according to the National MS Society, is at times “invisible.” It is something that the affected keeps to him or herself, and only lets it out of the bag if they have run out of excuses for their chronic fatigue, their clumsy feet, their seemingly endless restroom breaks, and their stints of suddenly poor memory and clouded thinking.
Kendra Saemann of Gurnee, a 10-year clinical trial patient is one of the lucky ones. “I started taking the drug liquinomod early on, and that likely helped me a great deal,” she said. The drug which was one of the first oral treatments developed for MS is made by Teva Pharmaceuticals. It has not yet been approved by the Food and Drug Administration, but looks promising.
She was diagnosed with MS more than 20 years ago when her son was just two years old, however you wouldn’t know it. “A lot of people can’t believe I have MS,” she said.
Saemann leads a full life, and keeps busy with her work in the human resources department at Abbott Laboratories.
While keeping active (MS patients must pace themselves) is important, Saemann has another belief: “It is crucial to talk with others who have MS. They are the only ones who can truly understand.”
Since 2007 she has co-coordinated a popular MS support group that meets in Libertyville with her friend Diane Schultz of Mundelen, also an MS sufferer. The two actually started the group, after realizing there was nothing like it in the area. “I had been going all the way to Evanston for meetings,” said Saemann. “That was the closest around.”
The women advertised their meetings on a Chicago MS group’s website, and distributed flyers to local businesses and churches.
That first meeting ten years ago at the Liberytville Civic Center at 135 W. Church Street, brought in seven people to the coordinators’ surprise. “Now we get between 13 and 20 people regularly. They come from Gurnee, Vernon Hills, Libertyville, Lake Forest, Mundelein,” she said. Meeting are held every second Wednesday of the month at 7 p.m.
“(The meetings) have been really inspiring, for me and others,” said Saemann. She explained that program topics have been interesting and timely thanks in part to the National MS Society based in New York which provides materials and ideas.
“Topics have changed over the years,” said Saemann, citing new technology and an array of treatment options. Some of the past topics include MS and relationships, How to talk to your children about MS, and MS and your emotions. Meeting-goers share their own stories, give advice and listen closely to others.
“What I love about the meetings is: It’s people who have MS, talking about having MS. Your neurologist, your nurse, your physical therapist just can’t do that.”
There are guest speakers that have included yoga and tai chi instructors, and an acupuncturist.
“We have even gone on field trips, once to an equestrian therapy farm,” said Saemann.
“I think that MS is a disease that you can learn to manager, and still have a full life,” said Saemann. The power of positive thinking is palpable. Number one, you are not alone. A support group is not a sad place, at least the one in Libertyville is not. It’s a place to lift you up when you’re feeling down, and there’s no judgment.”