When Bob Greenough was diagnosed with multiple sclerosis in his early 40s he was faced with two choices: surrender to the potentially debilitating disease or fight it with a rigorous exercise and balance training program designed for people with MS.
He chose the latter thanks to some inspiration from his wife, personal will power, and the support of UVM's IDEAL (Individually Designed Exercise for Active Lifestyles) program -- the state’s only MS exercise group with individualized exercise programs for people battling the progressive disease.
“The diagnosis was very difficult to hear,” Greenough says. “It hit me hard in 1992 when my balance really became an issue. My wife told me that I never give up on things, so I decided to face my diagnosis head on. IDEAL has had a significant impact on my balance and ability to remain physically active and motivated.”
Greenough, now in his 60s, is joined twice a week at IDEAL by about a dozen other individuals with MS from across the state under the guidance of program director Susan Kasser, associate professor of rehabilitation and movement science. The program emphasizes independence, balance, and mobility by coupling functional movements across different contexts of postural control. An individualized exercise and balance training program is developed based on the participant’s interests, abilities, and needs as well as assessments and referral information.
IDEAL for advancing research
Kasser started the program 18 years ago out of a lack of exercise opportunities for MS patients. She also saw it as an opportunity to advance her own research on MS. Ever since, she has been developing MS exercise programs based on research gathered from IDEAL participants. In her 2014 paper with Jesse Jacobs, adjunct associate professor, titled, “Understanding and Treating Balance Impairment in Multiple Sclerosis,” published in the Journal of Clinical Outcomes Management, Kasser synthesized research findings showing that patients with MS can tolerate challenging exercises, and that it improves their fitness, function and quality of life.
Kasser's latest paper in Disability and Rehabilitation, is based on a pilot study designed to evaluate the efficacy of functional balance exercises on balance impairment, physical activity and quality of life in adults with MS. Using a series of MS-based measurement scales and asessments, the intervention showed improved components of balance, mental well being and perceived fatigue impact and ambulation disability. Kasser hopes to conduct a much larger randomized, controlled clinical trial to confirm these preliminary findings with a $700,000 grant from the National Multiple Sclerosis Society that is currently under review.
The ultimate goal is to run the clinical trial at three sites: UVM, the University of Colorado and the University of California-Long Beach. Each site would use the same exercise equipment and lab-based metrics to measure and assess the performance of a large sample of participants with MS. “We plan to incorporate our evidence-based findings into the programs at all three sites," Kasser says. "Our main goal is to reduce fall risk and increase physical activity and quality of life among all people with MS.”
Students gain valuable clinical and research experience
Besides offering an important therapeutic service to participants, IDEAL also serves as a clinical opportunity for students in the Exercise and Movement Science Program in the Department of Rehabilitation and Movement Science. More than 100 students have provided direct support and assistance to participants, with many also participating in Kasser and Jacobs’ research program, which focuses on postural control and fall risk in those with MS.
Thomas Cuddy ’15 helped design a study on exercise and executive function in adults with multiple sclerosis as Kasser’s research assistant. He spent more than 150 hours working with Greenough and other IDEAL participants to overcome balance and mobility challenges.
“I was able to apply what I learned in class to the IDEAL program,” says Cuddy, who now works with children with disabilities. “Working with people like Bob really helped me understand what they are experiencing and how the exercises help them or need to be modified.”
Katrina Kunker ’15 screened patients with MS to see if they were eligible for one of Kasser’s studies. Her IDEAL program experience inspired her to become a researcher at the University of Buffalo where she conducts neuropsychological testing on MS patients with cognitive impairments. “You can read all of the theory in the world, but it doesn’t mean much until you work with MS patients. When I woke up on Mondays I couldn’t wait to work with participants in the IDEAL program.”