CHAMPAIGN, Ill. - Of all the debilitating diseases, multiple sclerosis may be among the most cruel, University of Illinois researcher Robert Motl believes. That's because it can literally stop people in their tracks in the prime of their lives.
"At the end of the day, MS is a disease that stops people from moving, that robs people of their ability to ambulate," said Motl, a professor of kinesiology and community health. "It is chronic, progressive and unpredictable, and it occurs at the most devastating time of life for people - between the ages of 20 and 40. It strikes women most often."
And it's relatively common.
"Most people know someone with MS," said Motl, who added that while certain drugs can be effective in treating various symptoms, there's no cure for the disease. And as it progresses, so does the afflicted person's overarching concern: "the fear of not walking."
"People use walking as a primary way of understanding disease progression with MS," he said. Progression goes from being fully ambulatory at the time of diagnosis to losing one's balance, tripping easily or walking with an awkward gait to being unable to walk 500 yards, using a cane, holding onto walls or other people for balance, and using a walker or scooter for mobility.
While others work to find a cure - which Motl said is unlikely to materialize any time soon - he and colleagues at the U. of I. are focusing their research on "understanding the role of exercise as rehabilitation for MS, with the goal of slowing, mitigating or ending the devastating effects of the disease."
That work, some of which has included collaboration with graduate student Erin Snook and kinesiology and community health professor Edward McAuley, includes examining the impact physical activity may have on symptoms, behavior, disability progression and overall quality of life of individuals diagnosed with MS.
In a meta-analysis, the results of which appeared in a recent issue of the journal Multiple Sclerosis, Motl and another graduate, Jessica Gosney, reviewed published research conducted over the past four decades. They looked at studies that considered the effects of exercise training interventions on quality of life among people with MS, and found a positive connection.
"We used effects from each study to come up with an average effect across studies and found that exercise is associated with a small improvement," Motl said. "But, that small improvement is clinically significant."
Putting the finding in perspective, "disease-modifying drugs also reap what is considered to be a similarly sized and meaningful effect," he said.
How and why physical exercise can translate to improved quality of life for an individual with MS is something Motl and McAuley are trying to pinpoint with support from a grant from the National Institutes of Health.
"What we've found are quite a few variables," Motl said. Most notable among them is a relationship between exercise and self-efficacy, or the confidence that individuals will succeed at what they're doing.
"Those who are more physically active have more confidence in their exercise performance, are more self-confident in general, and have more confidence in their ability to manage the disease," Motl said.
Feeling in control of the disease means they're more confident they can maintain their ability to walk, and that, he added, "translates to a better overall quality of life."
Working from that knowledge, Motl said, rehabilitation efforts - especially for individuals who've recently been diagnosed with MS and have not yet developed severe disabilities - should focus on "trying to generate exercise programs that are designed in ways to maximize self-efficacy in order to manage quality of life."
Designing such programs can be challenging he said, "since most exercise involves upright ambulatory movement," which becomes more difficult as the disease progresses.
But given that Motl's research also has indicated that exercise interventions can have "an overriding (positive) effect on walking ability," including an outcome comparable to drug interventions - but over a much shorter period - he remains interested in exploring determinants for inactivity among this population.
In a paper just published online in the journal Research in Nursing & Health, Motl, Snook and co-author Randall T. Schapiro examined overall and specific symptoms to see if there were correlations between activity levels and physical symptoms. The 10 most common overall symptoms associated with MS range from fatigue, difficulty walking, stiffness and spasms to dizziness, problems with vision, memory and other cognitive functions.
"We initially examined the intensity of overall symptoms as a correlate of physical activity, and then examined the possibility that specific symptoms of fatigue, depression and pain would account for the association between overall symptoms and physical activity by way of difficulty walking," the authors wrote.
Initial results indicated a statistically significant link between low exercise participation and higher levels of overall symptoms, fatigue and difficulty walking. Similar connections were not found, however, with respect to depression or pain.
Ultimately, the researchers determined that walking difficulty may explain the relationship between intensity of overall symptoms and decreased levels of physical activity.
These results reinforce Motl's belief that in order to get people with MS to exercise, "we have to start by trying to manage their symptoms."
"For instance, with fatigue, there are certain things you can do," he said. "If people may get more tired by afternoon, they could make sure they get exercise in the morning." Similarly effective, he said, is the concept of energy conservation: "Do only what you have to do, and do it efficiently." Also key, he added, is "planning well."
And if this approach to managing symptoms to increase participation and adherence in exercise programs can work for those with MS, he suspects it also can be effective for people suffering with depression, fibromyalgia and Chronic Fatigue Syndrome.
"This is about focusing on rehabilitation as opposed to medication," he said. And that represents a significant paradigm shift since most past research has been "all about finding drugs that stop or slow the disease."
A new, complementary approach is needed, he said, because "we're not even close to curing it."
Editor's note: To reach Robert Motl, call 217-265-0886; e-mail: robmotl@illinois.edu.