BLOOMINGTON — When Julie Warner of Normal was diagnosed with multiple sclerosis (MS) at age 25, “I was terrified that I’d end up in a wheelchair.
“So I started walking,” said Warner, 43.
When Josie Warren was diagnosed with MS at age 34, “It was devastating,” she said with tears in her eyes.
“You hear that people end up in wheelchairs,” said Warren, 42, of Bloomington. So, she began reading about MS, learned about alternative treatments, prayed and began exercising.
When Stacy Kirkpatrick of Normal, already a runner, was diagnosed at age 56, she was afraid because she knew nothing about MS. So Kirkpatrick continued to exercise but has had to make modifications.
The three women are doing what they can, including exercise, to mitigate their MS symptoms. That’s why they are among participants in a new, innovative program to provide conversation, support and exercise for people with MS.
“I feel safe here,” Warner said. “Mentally, it was a total game changer.”
“It” is Move MS, a program at the Advocate BroMenn Health & Fitness Center in the Center for Integrated Wellness, Bloomington.
Warner, Warner and Kirkpatrick are among 22 people enrolled in the class, said Molly Smeltzer, the fitness center’s fitness and wellness manager.
Move MS began Jan. 16 and the group is meeting every two weeks until May 1. But participants and organizers hope it continues after that.
The goal of the program is to empower people to live with their disease by teaching them safe exercises and providing them with information and support to help them to manage their symptoms and improve their quality of life, Smeltzer said.
That’s more difficult than it sounds.
MS is an unpredictable, disabling disease of the central nervous system that disrupts information flow within the brain and between the brain and the rest of the body, resulting in a variety of symptoms.
“The good thing is we can create new pathways in our brain through exercise,” said Kirkpatrick, 59, also a certified Pilates instructor.
“With MS, there is a sense that we are disconnected from our body,” Kirkpatrick said. “But I do believe that, with exercise, we can connect our mind and body again.”
Research in the past 10 years has shown that exercise benefits people with MS, improving their cognition and walking ability and reducing their risk of falls, said Sarah Sommer, Advocate BroMenn Health & Fitness Center wellness coordinator.
Some health and fitness center members with MS had asked about an exercise program for them, similar to the center’s Rock Steady Boxing class for people with Parkinson’s disease.
Sommer reached out to Brynn Adamson, a doctoral candidate in kinesiology at the University of Illinois in Urbana-Champaign. Adamson had been doing research on the impact of physical activity on people with MS.
Research shows that exercise in people with MS reduces fatigue, depression and anxiety, and results in improvements in strength, mobility, gait and balance, Adamson said.
“Quality of life improves with participation,” she said. “I wanted to create a community-based program for people with MS to incorporate what we’ve learned in research.”
Adamson, Sommer and Smeltzer knew any program needed to include education, social support and exercises that people would enjoy or they wouldn’t continue them.
What they developed was a six-session program. Each session is 90 minutes. The first 30 minutes is a discussion of topics, including goal-setting, dealing with barriers to exercise, how to address MS relapses (a return of symptoms), how to modify exercise and long-term changes.
The next 60 minutes of class is devoted to exercise: stretching and balance, aerobic exercise, resistance training, Pilates, yoga and Zumba.
Move MS participants are adults with MS ranging from people who use assistive devices such as scooters and walkers to people who walk independently.
Smeltzer said the program has been successful and there will be a phase two. What form that takes will depend on feedback from program participants.
Among clinicians referring patients with MS to the program is Munib Mafazy, a nurse practitioner with Advocate Medical Group-Neurology, Bloomington.
“I had been waiting for a program that is geared for MS patients that has a holistic, rehabilitative approach to give them support and help them deal with symptoms,” Mafazy said.
While there is no cure for MS, exercise can help patients improve their conditioning and stamina, temporarily lessening their fatigue. In addition, stretching can reduce muscle spasms, spasticity and pain, Mafazy said.
“It can improve their quality of life and physical and emotional well-being,” he said.
MS can cause scar tissue in the brain. But exercise enhances the ability of the brain to rewire itself, he said.
“The beauty of this program is it is customized to one’s needs,” Mafazy said. “Not everyone moves at the same pace.”
But Mafazy said the program is not for someone in a wheelchair with severe MS symptoms. “If you’re in a wheelchair, you need one-on-one care that you would get from physical therapy.”
Warren had problems with balance and vision and slurred speech before she was diagnosed. She was on medications to help manage her symptoms for awhile, but now is managing her fatigue and spasticity in other ways, including exercise, chiropractic care and massage.
While Warren once had a stressful relapse that included memory loss, her symptoms are stable for the time being.
“This (Move MS) has renewed who I was before the diagnosis took a part of me away,” Warren said. “It has helped to give me new life.”
Warner’s initial symptoms were numb legs, blurred vision and dizziness. She has taken medication to manage her symptoms but had a “terrifying” episode last October when she couldn’t remember words, including her children’s names.
“I am now stable. I have progressed a lot since then,” said Warner, who said fatigue remains a constant symptom.
“I’m here (at Move MS) because I felt very isolated with this disease,” Warner said. “I wanted to be around other people who had the disease and learn from them.
“I know now I’m not the only one,” Warner said. “It has given me hope. I am not just MS.”
Kirkpatrick’s initial symptoms were numb hands. That symptom has progressed to the point that she trouble holding things and can no longer read her handwriting.
Once an avid runner, she had to switch to swimming and spinning class because her feet became numb and her legs became heavy. A Pilates instructor since 2006, Kirkpatrick gets energy from doing and teaching Pilates, which helps her to combat fatigue.
“I joined Move MS because I wanted to be with people like me who have MS. It’s given me a great sense of community and more confidence. It’s my body and I’m in control, not the disease.
“Yes, I can do this (exercise) with the disease,” Kirkpatrick said after teaching the Pilates class on March 6. “I just did.”