Avera Medical Minute: Support groups helping multiple sclerosis patients stay active and make friends

Published: Mar. 8, 2022 at 8:51 AM CST
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SIOUX FALLS, S.D. (Dakota News Now) - When you hear the words “multiple sclerosis,” you may have a grim picture in your head of a typical patient.

March is Multiple Sclerosis Awareness Month, a chance to show that while this is a painful disease, there are people with it who live active, happy lives.

“MS is a scary-sounding disease,” said Dr. Andrew Ridder, an Avera Medical Doctor. “It is a disease that can cause a lot of problems, but also can be very treatable.”

We met a couple of them through Avera’s new, free MS physical therapy and support group programs.

Anita Bailey and Margaret Johnstad have both had MS for 30 years.

Which, considering they’re working out, or even walking at all, may surprise people.

“I’m not in a wheelchair, so people wonder, ‘do you really have MS,’” Bailey said. ”I think a lot of people think it’s muscular dystrophy. I did have some people in the very beginning say, ‘oh, that Jerry Lewis thing.’ No, it’s not. It’s multiple sclerosis.”

MS is a disease in which your immune system damages the nerve cells in the brain and spinal cord, and symptoms vary from patient to patient.

“Classicly, in MS, you can get weakness or numbness of a limb, or part of the body, or half of your face,” Ridder said. “Sometimes, your vision can change. You can get inflammation of the back part of your eye in the optic nerve, causing almost blindness sometimes. But we can usually treat those symptoms pretty quickly.”

Said Avera physical therapist Stephanie Myers: ”Some may have weakness, some may have an imbalance, some may use a walker, some may use a cane, some may use a wheelchair.”

Bailey and Johnstad both feel fortunate they can walk. But they both say the pain of MS can be excruciating.

”Unless you experience it, you just can’t tell anyone what it feels like,” Bailey said. “I used to tell my kids, I have no power today, and they could understand that.”

”I could be crossing 41st street and get so tired that I would just want to lie down in the middle of the street, regardless of the traffic, and I wouldn’t care,” Johnstad said.

Advancements in immunotherapy medicine have helped alleviate pain.

But Dr. Ridder says Avera to truly make life with MS work best, “it is important in MS to be physically active, to go through the exercises, to have a good, healthy diet, and to make sure other risk factors are managed.”

About four months ago, the Avera Foundation provided a grant to help MS patients physically, and mentally, recover together.

There’s a monthly support group and a weekly exercise class.

That is where Anita and Margaret met.

“We’re able to compare some notes, you know, that, just kind of what I feel, ‘do you ever have this,” Bailey said. “It’s fun, you know, just giving her some support. ‘Hey, you’re doing a good job.’ She’ll do the same with me.”

”We just understand each other, and it’s nice to be able to get together and just share our lives,” Johnstad said.

Out of shared pain has come shared joy.

”This group is wonderful. I enjoy coming here with Margaret,” Bailey said.

Among many good vibrations, Johnstad feels about the sessions, “thankful” is the first that comes to mind.

“Thankful for the wonderful care I’ve had medically, but also for this encouragement that has been provided,” Johnstad said. “(Through) these grants we’ve been given. I’ve been able to take these classes. ”I’ve made friends with the therapists. I’ve made friends with the others who come, and it’s enriched my life.”

The weekly exercise classes and monthly support groups are free, and open to anyone in the region with multiple sclerosis.

“MS is not a life-changing thing,” Myers, the physical therapist, said. “You really can improve your quality of life, get out and move, just help encourage one another, and it’s not too late to start exercises. It’s not too late to join these classes.”

If you’d like to join, visit Avera.org/medicalminute.

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