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Connections | Magazine

To manage my MS, I find inspiration in my fellow patients — and my mother

At 91, my mother already knew what I have only recently learned about the power of exercising in groups.

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Chronic back pain brought me to the physical therapist’s office. I was expecting empathy and exercise, but instead I was met with what felt like a scolding: “Well, you gotta get up out of that chair!”

I wasn’t pleased. But I’ve learned to recognize tough love, and in time, I have come to appreciate it. The admonition and the community it led me to have proved to be a mobilizing force.

I have multiple sclerosis, and getting my body moving is often the last thing I want to do. I use a wheelchair to get around, but I can walk with a walker for exercise. It is tiring, though, and I had gotten lazy. I wasn’t exercising enough to relieve the back pain that comes from spending time in a seated, slouched position. I hadn’t realized that until the therapist called me out.

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Once we are pushed to start, how do people like me get motivated to keep moving? Inspiration can come from others — in my case, everyone from complete strangers to my own mother.

I started attending a program in Waltham run by the tough-love guy. It’s just for people with multiple sclerosis. The large gym is filled with equipment, all of which we’re urged to use. After addressing our individual needs — for ice vests or heating pads, for example — the staff encourages those who can to walk with walkers all over the gym, no matter how tiring it is. As the parade of walkers slowly moves across the floor, I feel supported. The complaining looks on the faces of the others are exactly like mine.

As we ride stationary bikes or do core exercises on adjacent tables, we share, much to the chagrin of the amiable, compassionate therapists, who would rather we focus on the task at hand. The talk distracts us from the difficulty of the exertion and helps us keep it up.

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“What do you think of your MS doctor? I’m looking for a new one.”

“Don’t worry, you won’t find this bike so hard when you’ve been here awhile. I did, too, at the beginning.”

“You might want to try weekly massage to keep your pain in check — it works for me.”

The chatter spills over from the gym into the small waiting room, where spouses, family members, and friends await their loved ones. I ask one husband, “Where have you and your wife traveled to that you found most accessible?” With another, I discuss the modifications we’ve made to our homes.

My 91-year-old mom has known for a long time what I’ve learned over the past 13 months. For 15 years, she’s been going to the pool three times a week. Although her exercises certainly have had therapeutic value, relieving hip pain and helping to wean her from a walker, her pool group is what keeps her coming back.

Though the members vary, the bond between them when they are enveloped in the warm water stays the same. As they move their limbs, they discuss the problems and pleasures their families bring them — things they might not share with anyone else. They chat about the food they’ve cooked and eaten lately. They avoid politics. They never meet in their street clothes, but they trust one another. Someone is always assigned to call and check on a member who is absent. My mom wouldn’t dream of missing a Monday, Wednesday, or Friday unless there is a blizzard.

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I never knew people with MS could improve their condition, and I have had it for 23 years. I thought it could only be stabilized. But the members of my group inspire one another. The program helps us help ourselves, strengthening legs and arms, reducing pain, improving balance, and gaining hope.

And I am so pleased that my mom has enjoyed a similar experience. We both have learned that the power of a group can keep us moving in the right direction.


Carol Steinberg is an attorney, disability activist, writer, and speaker based in Boston. Send comments to connections@ globe.com.