‘MS Mafia’ fighting multiple sclerosis
In 2004, when Lori Julen signed up for her first Walk MS, she only wanted to help raise money for research. She had no intention of one day organizing that event as Joliet committee chair.
But when Julen, 45, of Romeoville, who received a multiple sclerosis diagnosis 16 years ago, saw the walk path was not handicapped accessible, she knew that had to change.
“I was like, ‘Really?’ ” Julen said. “My husband and a couple of men helped more than one person in a wheelchair down cement stairs to a gravel path. I raised a big stink and then no one was willing to run it. I felt that since I’d opened my mouth, I should jump in and see what we could do.”
Most of the new course is a paved walking path. Julen, who is also team captain of MS Mafia — thus named because the team’s goal is to put out a “hit” on the disease by raising research funds — expects nearly 500 participants at a walk that attracted just half that amount two years ago.
Julen’s team alone has more than 30 members. She anticipates Sunday’s walk — with 28 registered teams so far — to raise at least $50,000, with MS Mafia bringing in about $5,000 of it.
Julen was 18 when she began experiencing limb discomfort. Although she had a relative with multiple sclerosis, Julen’s symptoms appeared so gradually and sporadically, doctors didn’t immediately consider multiple sclerosis as the cause.
“My leg or arm would feel achy and heavy, like I was dragging around dead weight,” Julen said.
As the disease progressed, Julen’s personality became less easygoing and more quick tempered, especially when daily life situations rattled her. Julen noticed cognitive changes, too.
“I had doctors refuse to see my children because I had forgotten so many appointments,” Julen said. “I forgot meeting with their teachers or meeting my friends for lunch. People would ask, ‘How can you forget something that important?’ It was hard to explain. I just forgot.”
Through the years, Julen has tried several injectable drugs, but none relieved symptoms. For the past 18 months, an oral medicine has provided some benefit.
Nevertheless, Julen began wearing glasses three years ago to correct the vision multiple sclerosis had altered. In 2010, fatigue and pain interfered with Julen’s work as a medical biller, so she quit her job.
Except for quick trips, grocery shopping alone is an activity of the past, even with handicapped parking.
“If I do go to the store for one or two things, by the time I walk to where I need to go and back out to walk to my car ... it’s just too much,” Julen said.
On energetic days, Julen runs errands and prepares a large dinner for her family: husband Don and her children Lindsey, 25, Lee; 21; and Mallory, 19. On challenging days, even getting off the couch requires too much effort.
“My biggest goals on those days is to know my body,” Julen said. “If it says, ‘I have to rest today,’ then I rest. Otherwise, I suffer.”