Living Well with Multiple Sclerosis

Carla Harris joined the Eula C. and Andrew C. Carlos Multiple Sclerosis Rehabilitation and Wellness Program about a year ago, and she’s all in.

“My highlight of the week is I get to go to Shepherd on Mondays, and then I do at least two Zoom calls a week with the Wellness Center, so I can exercise from home,” she says.  

Carla is a mom of five and now a grandma. She was diagnosed with multiple sclerosis (MS) in 2015, and her husband passed away in 2022. She says the loss of her husband and the way MS has affected her ability to be the grandma she wanted to have been “a lot to work through.” But the MS Rehabilitation and Wellness Program has given her a mental boost.

“The mental has just been like a light switch — night and day,” Carla says. “They're very positive, so they're putting good thoughts in my head, encouraging me. I guess I needed a cheerleader, you know? But it's just been a good mental thing, and of course, a good physical thing too, because I'm moving and doing stuff. And I want to say maybe I have prevented a couple of falls by remembering things they told me.”

And Carla feels the influence of the exercise classes throughout the week.

“My whole week is different, not just those three hours — because I think about things differently now. Of course, it's very hard. I often think, ‘I can't do it. I can't do it.’ But I guess because I've been working with them, it's like, ‘I can do this. So let me try it this way.’ They've given me a nudge in the right direction of — ‘You can. Keep trying. Or, if you can't do it the way you used to, there's another way to do it,” she explains. “And they're letting me know that it's okay to be different. You know, do it in a way that works for my body. And even in the class, we're all different. We all have MS, but it's affected us all differently, so we're all supporting each other.”

Addressing Many Components of Health

Depending on the day of the week, MS Rehabilitation and Wellness Program participants might be at Shepherd Center or online — exercising, socializing, learning something new, or all of the above. Like Carla, their calendars are full of opportunities to focus on wellness with a supportive community of people with MS, neuromyelitis optica (NMO), myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD), and transverse myelitis, all conditions that can cause inflammation in the nervous system.

Exercise physiologists Meghan Santander and Sheree Love are intentional about including classes and gatherings that fill a broad cross-section of needs.

That includes exercise classes — both in-person and virtual — that focus on cardio, strength training, and balance and are tailored to different levels of function, including seated classes for people using manual or power wheelchairs. There are aquatic exercise classes in Shepherd’s pool and get-togethers for anything from playing board games to decorating cookies to gathering at a local mall to walk. The gatherings always offer an opportunity to socialize. At the mall, Love shows participants how to navigate, including where to park for easy access to the building, where elevators are located, and good spots to stop and take a break.

The program also includes educational sessions led by experts from Shepherd’s staff on topics that appeal to the MS community, like MS and menopause or MS and travel accessibility.

“Our therapists will partner with us and teach educational classes, and we also partner with the clinic. It's been really cool to see how much everyone gets behind the program and offers resources to the participants,” Santander says.

A recent speaker shared information on MS and Intimacy.

“We’ve tried to offer up information that a lot of people have questions about but sometimes feel weird or embarrassed asking,” Santander explains. “So rather than you feeling like you need to ask, we'll give you a bunch of information and the space to bring it up if you feel comfortable.”

Responding to the Needs of the MS Community

Program offerings are often based on what Love and Santander hear from members.

Case in point: Shades of MS, a group Love started for the Black MS community.

“That came about from our members saying, ‘Hey, I love that you look like me — I don't always see myself in the clinicians that I deal with, and so it would be nice to connect with others,’” Love explains.  “I just gleaned from them. ‘What do you need? Tell me what will be fun for you. Tell me, what are the things that you used to do that maybe you can't do so much? And how do we bring that to your doorstep so that you don't have to go searching for it?’”

The name Shades of MS refers both to the varying hues of participants’ skin and the idea of shade as a kind of protection.

“I wanted to provide a safe space for them to come in and feel like they were protected and covered, and we can talk about the things that are interesting to them. And I can also bring in resources and clinicians to attack those subjects. So, I'm only one component, but if I can tie you into someone else who knows your disease or tie you into someone who can provide resources for you, let's do that,” Love explains.

Although the idea for Shades of MS came from Love’s interaction with MS Rehabilitation and Wellness Program Members, the monthly meetings are open to anyone in the community.

Creating community — and a safe, comfortable, and supportive space is another aspect of the MS Rehabilitation and Wellness Program that Carla fully embraces. On top of the exercise classes she attends, Carla participates in the MS Book Club and a new group called “Winning Wednesdays.”

“We just kind of talk,” Carla explains. “It's a group of other people with MS, and we talk about a specific issue or something we're struggling with — tricks and tips that have helped people. Nothing is formal like a doctor saying what to do. This is just what has worked for other people who are going through the same thing, and we're here to support each other.”

The small group meets virtually on Wednesday mornings, with many members having coffee in hand. Love provides a structure for the discussions. She often coaches participants on breathing techniques and hopes it helps them set their intent for the day. Sometimes, there’s homework — one week, Love asked participants to share their superpowers. Another, she asked them to think about what they’d like to work on for the next seven days. “Not your six-month plan,” Love explained, “But for the next seven days. What would you like to accomplish?”  The meetings are another way the MS Rehabilitation and Wellness Program helps members connect with a supportive community.

“It’s very open,” Love says. “We get to dig a little deeper with the members and find out more like, ‘I didn't know that you used to paint’ or ‘I didn't know…’ and it's another way to build camaraderie. This is a chance to meet other faces and say, ‘Oh, wow, I didn't know our stories were the same.”

That camaraderie is an essential part of the MS Rehabilitation and Wellness Program.

“When it comes to wellness, I think a lot of people focus on just the fitness or just the physical activity of it,” Love explains. “And wellness has so many different components — exercise has always been a passion of mine, but as a mother and woman, I understand that there are days when that's just not it. And maybe I don't need exercise; maybe I need a positive word. Or maybe I need some camaraderie and socializing. Or maybe I just need a mental break. And so, I wanted to make it a well-rounded, robust program where you can get whatever you need for that week.”

For Carla, the MS Rehabilitation and Wellness Program and the care she receives at the Andrew C. Carlos Multiple Sclerosis Institute make for a winning combination.

“I'm not moving. I'll be here. But I've often thought I can't leave Shepherd Center. I can't go anywhere else. I would never want to get treatment at any other facility,” she says.

Getting with the Program

The MS Rehabilitation and Wellness Program is open to the community. Prospective participants just need clearance from their doctor. Potential members get four complimentary sessions with the wellness team, during which exercise physiologists talk through what the program might look like for the individual. Membership is paid in six- or 12-month increments, and scholarships are available. According to Santander, once people join the program, they often stick with it for more than exercise.

“It's giving you that community of people who are going through a journey similar to yours,” Santander explains. “The group is exercising, but also, they are friends and are talking about how their kids or grandkids are or opening up about a struggle they're having, and people offer advice. So, it has a nice family feel to it, which is really sweet because MS can be very isolating. People often feel like their family doesn't truly know what it feels like to deal with it. Sometimes, we (the instructors) don't step in at all — someone will voice something they're struggling with, and the rest of the group immediately meets them with support and advice — it's really cool to watch.”

For more information about the Eula C. and Andrew C. Carlos Multiple Sclerosis Rehabilitation and Wellness Program, email mswellness@shepherd.org.

Written by Ruth Underwood