People with Multiple Sclerosis Find the Right Moves at Shepherd Center
Specialized classes offer fitness and friendship for people with MS.
On a brilliant, 70-degree day when the gaudy foliage, blue sky and low humidity seemed to demand outdoor activity, five women exercised in a room with the lights off, blinds closed and the air conditioning on high.
Balancing on their right knees, left feet forward, backs straight, hands together overhead, they held a yoga pose called the Warrior to the accompaniment of propulsive rock and roll from a CD player on the floor: “I ain’t gonna live forever/I just want to live while I’m alive/It’s… my… life…”
Traditionalists may blanch at doing yoga to Bon Jovi, but the sentiment could not have been more appropriate. The class members have multiple sclerosis (MS) and are engaged in an experiment that is unique and possibly pioneering.
“We’ve got the symptom management thing under control,” says Erin Boyt, 40, of Lawrenceville, Ga. “But now what? You have MS, OK. How are you gonna live your life?”
MS is a progressive disease in which the body attacks nerve coverings, causing scarring in the brain and spinal cord. It is often diagnosed when patients are in their 30s. It is two to three times more common in women than men.
Unlike spinal cord and brain injuries, however, “there are a lot of unknowns,” says Christine Manella, PT, LMT, MCMT, therapy manager at Shepherd Center’s Andrew C. Carlos MS Institute. “Pain and fatigue can be issues, but not everyone has them. There can be cognitive and memory issues, or motor and sensory problems. It’s different for different people. Once you’re diagnosed, you might go 30 years and just need a cane. Or you could be in a wheelchair. It’s a wait-and-see kind of game, and it’s anxiety-producing.”
For many years, the treatment for MS was medication. Anything more strenuous than mild walking was considered dangerous because it could elevate the core body temperature and trigger a relapse.
But recent studies found that exercise can help patients gain strength and control spasticity without aggravating their symptoms. In 2012, the MS Institute started the Eula C. and Andrew C. Carlos Multiple Sclerosis Rehabilitation and Wellness Program to help patients slow the progression of the disease and improve the quality of their lives.
Many who came to the program were older, had more disability and were in wheelchairs. But some, like Erin, functioned at a high physical level, and the initial classes didn’t meet their needs.
“These are folks who walk around just like you or me ,” says Blake Burdett, BS, the program’s exercise physiologist. “They would do well at a gym, but the staff at gyms don’t know how to handle MS. You have to take their limitations into consideration.”
In spring 2014, Shepherd Center started a program specifically for high-functioning people with MS. It includes aquatics, Pilates, weight training, balance training and yoga. The classes are held in air-conditioned rooms, cooling vests are available and they are supervised. Data is kept on all participants and is presented at MS professional meetings so other healthcare professionals can improve their practices.
“I can’t say for sure that we’re the only ones in the world with this kind of program, but I’m not aware of another,” Burdett says.
“It’s been a real gift that Shepherd has this program,” Erin says. “I don’t know why it doesn’t exist in a lot of places. It’s the best thing if you have MS, no matter what level of ability or disability. I feel I can push myself in the classes because I’m around people who understand my breaking point. I’m not always good at regulating myself. Now, I have the confidence to exercise and get stronger without worrying that I’ll wind up in the hospital.”
“This isn’t your typical spin class,” says Kris White, 37, of Smyrna, Ga. “You have to know your body and make sure you stay cool. But some activities are structured so that we work as a team, and that’s been very fulfilling – helping each other, urging each other on. There’s no judgment and no pressure. If you’re not able to do the reps or you’re tired that day, it’s OK. Everyone understands where you are.”
They have also developed a sense of accountability to each other.
“I may not feel like going, but I don’t want to let the group down by not going,” Kris says. “And, usually, I feel better once I get there.”
The women have bonded to the point that they attend other classes together and socialize away from the hospital.
“It’s made me feel normal again,” says Roxanne Waring, 54, of Atlanta. “I might not be able to do everything, but I feel good about myself. And having great friendships makes me happier and physically makes me feel better. It’s the best thing that’s happened to me. The exercise, the staff, the people in the group…I tell people that Shepherd Center has changed my life.”
To learn more about MS Rehabilitation and Wellness Program, contact exercise physiologist Blake Burdett at 404-603-4916.
By John Christensen
Shepherd Center provides world-class clinical care, research, and family support for people experiencing the most complex conditions, including spinal cord and brain injuries, multi-trauma, traumatic amputations, stroke, multiple sclerosis, and pain. An elite center recognized as both Spinal Cord Injury and Traumatic Brain Injury Model Systems, Shepherd Center is ranked by U.S. News as one of the nation’s top hospitals for rehabilitation. Shepherd Center treats thousands of patients annually with unmatched expertise and unwavering compassion to help them begin again.