STEP for MS Aims to Help People with Multiple Sclerosis Understand How to Exercise Safely and Effectively
Two former STEP for MS participants share their experience and tell why it was worthwhile to join the study.
Exercise can be beneficial for anyone’s physical and mental health. Recently, research has demonstrated that exercise may also decrease the symptoms and improve the health and mobility of people with multiple sclerosis (MS), an unpredictable disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body.
To better understand what exercise options are the safest and most effective for people with MS, Supervised versus Telerehab Exercise Program for People with MS (STEP for MS), a four-year study funded by the Patient-Centered Outcomes Research Institute (PCORI), was launched in 2017. Researchers from several sites, led by Deborah Backus, PT, Ph.D., director of multiple sclerosis (MS) research at Shepherd Center, and Robert Motl, Ph.D., a professor at the University of Alabama at Birmingham, hope to use findings from the study to develop tools and information for people with MS, caregivers, community providers, insurers and policymakers about different modes of exercise interventions to help them make educated choices.
STEP for MS will compare the outcomes of a 16-week exercise program conducted at home (“telerehab”) to a program conducted in a gym (“facility-based”). The exercise protocol in both programs is exactly the same; the only difference is where people will exercise.
In order to do this important work, researchers need volunteers who meet certain qualifications to participate in the study. Participating in a study like this may seem like a daunting task. To demystify the process, two former participants shared their experiences. Paul Fleming, 53, participated in the telerehab arm of the study while Christina Thompson, 36, participated in the exercise facility-based arm. You can learn more about the study and qualifications to participate on the STEP for MS website.
When were you diagnosed with MS?
Paul: I was diagnosed in 2004. I went to a neurologist because I was having seizures and didn’t realize it. They happened a couple of times a day and would last five to 10 seconds. My entire left side would just turn off. I was referred to Shepherd Center and have been under Dr. Ben Thrower’s care. I come to Shepherd Center two times per year now for infusions.
Christina: I was diagnosed in February 2018 after I started to have trouble walking and urinating. After being misdiagnosed a few times with UTI’s and bacterial infections, I finally went to my regular internist; she was the first one to say the words multiple sclerosis. I woke up the day I was scheduled to get an MRI unable to feel the right side of my body or see out of my right eye. After several hours in the ER, an MRI, blood work and a spinal tap, my MS diagnosis was confirmed. I now receive an Ocrevus® infusion every six months and have started to feel like my old self again.
How did you find out about the STEP for MS study?
Paul: I got a call from Erica Sutton at Shepherd Center and she asked if I wanted to participate. I told her I did and came in to do the evaluation. I participated in the study from August to September 2019.
Christina: I received a letter from my insurance company that mentioned the study, so I asked my doctor about it. He was very supportive and suggested I give it a shot. I used to run and exercise on a regular basis, but it’s been hard since my diagnosis. It’s hard even walking a mile without my legs getting tingly and numb. I submitted my name, took the survey and ended up participating in the study from October 2019 to January 2020.
Why did you sign up for the study?
Paul: A lot of times with MS, you can back slide. They caught me at the right time because I wasn’t exercising like I should be, and my MS was coming out of remission. Continuing to push to exercise through this study helped me.
Christina: I signed up for two reasons:
- I wanted to contribute more to the MS community. I participated in Walk MS the past two years and donated money, but I wanted to do more. This is my way of helping.
- I hadn’t been able to really exercise in almost two years. I don’t know if it was out of fear of falling or a lack of confidence. I thought this study could be an incentive to get me active because it was for a good reason – to help the MS community.
What was that like to participate in the study?
Paul: It was easy to sign up. You go into Shepherd Center and get evaluated. I was there a total of about three hours and was assigned to the home-based study. You are mailed your kit with a DVD and exercise guide that has visuals of each activity you’ll be doing. The kit also had various exercise bands and a pedometer. Every couple of weeks, you increase the level of exercises you do.
I thought the support I got was really great. I had a team leader who would call me every couple of weeks to check in on me. Each week, I’d also do a short evaluation that I’d submit with my results. Even though you are doing the exercises at home, you don’t feel alone. I felt free to call my team leader or Shepherd’s research team.
Christina: Before you start, you’re invited to Shepherd Center to go over your history with MS, symptoms and medicines you are on with a member of Shepherd’s staff. I also did a walking test and filled out some survey questions. All-in-all it was pretty simple – they are not judging you at all, but just seeing if you are right for the study.
I was then assigned to the facility-based training. I met with my trainer and we worked out the times I was available to meet. The beginning was rough. I hadn’t exercised in so long; walking around work and running errands is a lot different from using a treadmill and body weight exercises. I was really sore after the first couple of sessions and couldn’t walk on the treadmill at first. It got easier over time to where I could walk 50 minutes on the treadmill at a 2.5 to 3 miles per hour speed followed by a session of body weight exercises.
Was it worthwhile to participate in the study?
Paul: People with MS go through a lot of emotional swings, and exercise breathes life back into your body because it gets your endorphins going and makes you remember that, “Hey, I’m still here.” The more you can do through a program like this, the better. For me, everything has gotten better, and I asked myself why I had stopped exercising in the first place.
Doing the research also helps the next group of people. Whatever struggle you may have, the findings from your study help the next set of individuals who come into the study. I want to make life easier for the person behind me.
Christina: Personally, it gave me back the support and confidence I needed to exercise again. People feel it’s intimidating to go into a gym. You can lack the confidence you need, especially if you have something like MS. By working out with trainers, I had people who understood what I was going through. That helps tremendously. I now try to exercise three times a week, doing 30-40 minutes of cardio and then some body weight exercises.
Since the beginning of the study to present date, I’ve lost almost 50 pounds! I had gained weight due to all the steroids I was taking, so losing it all, plus a little more, has definitely been an added benefit of the study. Learning to exercise again made me healthier in general which is especially important for MS patients.
I hope that the study has good results so that researchers can better understand what works well for patients and what doesn’t. I would love to participate in more studies.
Do you have any advice for someone who has recently been diagnosed with MS?
Paul: You’re definitely in the right place and right time with the advancement of medicine. Know that if you have the right doctor, that’s your security blanket. Being under Dr. Thrower’s care, there’s very little I have to worry about. Also, I’d say you should focus on moving forward and maintaining a healthy lifestyle and eating habits.
Christina: I know it sounds cliché, but don’t give up. I felt like crawling in a hole and giving up so many times, but I kept going. The advice I would give is to talk about it more. I made the mistake of not wanting to go to support groups or psychologists when I was first diagnosed. I had family and friends, and that’s great, but just recently I started talking to a professional, and it’s made a world of difference. My mom gave me this little plaque when I first got sick that says, “You never know how strong you are, until being strong is the only option you have.” That keeps me going.
Also, make sure you are happy with your doctor. This is something that’s not going away – it can get better if you treat it, but you need to find someone you trust with your health and more importantly, is your advocate for what you need while navigating the MS world.
PCORI is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers and clinicians with the evidence-based information needed to make better-informed healthcare decisions. This work was supported through a Patient-Centered Outcomes Research Institute (PCORI) Project Program Award (MS-1610-36999). For more information about PCORI’s funding, visit www.pcori.org. Click here to view an overview of the study.
Written by Damjana Alverson
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.