I’ll admit it — I’m a willing guinea pig.
I just got home after participating in a study for people with multiple sclerosis (MS) at the University of Alabama in Birmingham. I had to repeat numbers, identify pictures, do some calculating, and more that I frankly don’t remember. I dreaded it because I know I forget important things and sometimes struggle with a word I should know. But the study facilitators were kind and patient, never suggesting that I messed up a task.
The process took time out of my day, and it could be physically and psychologically draining if I thought I performed poorly. However, I felt like it was worth it in the long run, and I wanted to share a few reasons why I’m willing to be part of research trials and studies.
What if the researchers are able to come up with new therapies because of the studies I participate in, or new workarounds that will help me with mobility, cognition, or incontinence issues? Even if my volunteering doesn’t benefit me directly, it’s worth it. I assume other volunteers gave their time so we now have different medical treatments and physical and occupational therapies.
That said, I did receive the equivalent of a gift certificate that I can use for a lunch out or a manicure if the current COVID-19 situation allows.
Each study introduces me to new ways I can attack my MS. The first study I did examined the benefits of yoga versus chair dance aerobics versus an at-home exercise program. All participants were randomly assigned to groups, and I was assigned to what I considered the most awful — chair aerobics.
Fortunately, I ended up loving it. The instructors chose well, using very different kinds of music that I loved. We faced the instructors, not a mirror. Each of us let ourselves go, and it was great for increasing the heart rate. It forced my body to move in ways it hadn’t moved in a few years. It felt exhilarating to dance and not worry about how I looked.
I also participated in a study on the benefits of meditation, another one on balance and equilibrium, and another on endurance. Most were in person, but meditation was over Zoom.
People drive from all over to participate in these research studies. Some drop out of them because life gets in the way. I have been turned down on occasion — because of a recent relapse or some physical limitation.
It can be a challenge to participate in studies if you work full-time or have a restricted schedule, but I see it as a beneficial opportunity. The positives far outweigh any inconveniences!
MyMSTeam columnists discuss multiple sclerosis from a specific point of view. Columnists’ articles don’t reflect the opinions of MyMSTeam staff, medical experts, partners, advertisers, or sponsors. MyMSTeam content isn’t intended as a substitute for professional medical advice, diagnosis, or treatment.
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