The changes were part of the larger renovation of the hospital's first floor. For the MS Institute, the first phase concluded in December 2025 with the opening of 26 new MS clinic rooms. Then, this year, at the end of July, the Eula C. and Andrew C. Carlos Multiple Sclerosis Rehabilitation and Wellness Program moved from the plaza level of the Woodruff Family Residence Center to the first floor of the main hospital, right behind centralized check-in. And finally, in August, 16 more clinic rooms opened on the opposite side of the hallway from the initial 26. 

If that sounds like a lot of changes in a short period of time, it is. The bottom line is that the entire MS Clinic is now housed in one centralized space.

Rich LaFramboise has been a patient at the clinic for just three months. He appreciates that all the services are close together, demanding less time and energy to access.

“It makes it so convenient and less stressful,” he says.

And for staff, creating a smoother experience for patients is a huge payoff. Case manager Whitney Seegars, MBA, CCM, notes that the patient experience includes getting to and from the clinic.

“The majority of our population rides Marta mobility, or they take Uber or Lyft. So, it's convenient that we're right at the front door,” she explains. “We're kind of centralized to everything else. Our patients also spend a lot of time in radiology, a lot of time in urology. And then of course, they spend a lot of time in our clinic with our physicians. So, it's great that we're all right here together now.”

Seegars also appreciates being close to all her teammates.

“I'm right here with the providers. If something needs to be signed right away, needs to be faxed over right away, I'm right here with them now, she says. “I've been able to collaborate a little bit more with my colleagues. I see more case managers on a day-to-day basis.”

That collaboration is something Rebecca Duguid, PT, DPT, program manager for the MS Institute, is especially excited about.

“For me, a huge part of this is that the team is all together. The rehab team, the wellness team, all the nurses, the medical providers, the managers, the case managers, we're all together and can just have a more collaborative, organic relationship.”

With the new, private exam rooms, patients coming for infusions can get comfortable, staying in one room for their pre-infusion appointments and infusions.

“That has made a tremendous difference in patient care,” says clinic nurse Rosa Borja Martinez, ADN, RN. “They're like, ‘Yay, I just get to stay in one spot for the few hours that I'm here.’ … I feel like it gives them a better experience that way.”

MS Rehab and Wellness physical therapist Ally Brainard, PT, DPT, says strong communication throughout the process was key to a smooth transition and brought the team closer.

“Pretty much every other week, we'd have a staff meeting talking about what to expect. And so we were all on the same page. I also feel like it was a bonding experience for all of us as coworkers. Doing it together was really fun.”

And she sees many benefits to being in the new space for both patients and staff.

“For [MS Rehabilitation and Wellness] patients, just being on the first floor has … really streamlined the process for them of getting here, checking in, it's the same as they do for their doctor's appointments,” she says. “Being in the main building in the hospital … we feel more part of Shepherd Center as a whole, which is really nice. And then also having the nurses and the doctors and all the APPs (advanced practice providers) nearby has been awesome. I feel like we've all gotten to know each other more. We can reach out to each other for questions … so it can be even more collaborative than it already was. And then we have a nice and shiny space … [with] all the best equipment, which makes serving our patients really great.”

Rich, who recently completed the MS Institute’s Integrated Therapy Program, can vouch for the results.

“The rehab/therapy area is so clean, bright, and welcoming. It’s such a pleasure to go there for therapy. The entire team is very professional and friendly.  They make you feel like each appointment is a visit with an old friend.”

Written by Ruth Underwood

Her first symptoms appeared when she was pregnant with her daughter in 2006. Her vision would blur, and at times, go dark completely. 

“I watched all the episodes of [A Baby Story on TLC], read all the books. I was that person — did all the research, and probably scared myself more than needed,” she reflects on her pregnancy. “So, it completely threw me because going blind was not one of the things that was on my checklist [of pregnancy symptoms].” 

She went to a specialist who eased her worries. While rare, vision issues can be a pregnancy complication, he said.

She gave birth to her daughter, Adia Sims, in 2006. But her vision problems and other severe symptoms continued on and off for years, leading her to the emergency room. Doctors would run MRIs, CT scans, and ultrasounds, but the tests never offered the answers they were looking for. 

Eventually, she got a referral to Shepherd Center, where doctors in the Andrew C. Carlos Multiple Sclerosis Institute confirmed that Tachiana had MS. It was October 2015, nearly 10 years after her symptoms appeared. 

By that time, her symptoms made her give up many of the things she loved — baking, running, and traveling with her daughter. She used a walker to get around, and in her initial consultation at Shepherd Center, she struggled to walk at all. But that was all about to change. 

“Finally, I was somewhere where people actually understand, and they know what’s going on,” she says. “Within my first three or four treatments, my vision started to get better.” 

She began intensive physical therapy to rebuild her strength, and the MS staff gave her tools to keep improving at home in between sessions. But even as her symptoms improved, Tachiana had a long journey in front of her, including helping Adia understand her condition. 

“I think her biggest [concern] was, ‘There's no cure, are you going to die?’” Tachiana remembers. “That just broke me hearing her say that.” 

Tachiana encouraged Adia to ask questions about her MS, as well as to voice her feelings when she was scared or upset. She made Adia appointments with a therapist so she could freely discuss her feelings. And she made it a point to show Adia some of the realities of living with MS. 

“I also had to teach myself to stop hiding my episodes or symptoms when I was feeling bad, so she could get a better understanding and get comfortable with seeing me like that,” she says. 

Today, Tachiana and her daughter are back to doing many of the things they love: cooking and baking, going on trips, and living an active lifestyle. She emphasizes that it’s taken time for them to get to this point, something she encourages other parents with MS to embrace. 

“Be patient, give yourself some grace, try to be as positive as you can,” she says. “It’s okay to ask for help ... lift yourself up just as much as you lift your kids.” 

And for children with parents who have MS, Adia, now 19, has some advice too. “It can be hard or confusing to understand, but the best way is to take it slow. It’s okay to ask questions,” she says. “It’s going to be hard, but over time you’ll get used to it and find ways to help with it and find better ways to cope with it.”

Written by Erin Kenney

Neurologist Meena R. Kannan, M.D., MPH, recently joined the Andrew C. Carlos Multiple Sclerosis Institute at Shepherd Center.

Dr. Kannan earned her medical degree and her Master of Public Health from the University of Alabama at Birmingham, followed by a residency in neurology at Emory University School of Medicine, and a fellowship in multiple sclerosis and neuroimmunology at Oregon Health & Science University. She is board-certified in neurology by the American Board of Psychiatry and Neurology.

“My approach to patient-centered care is grounded in the belief that the best outcomes come from combining early diagnosis, evidence-based treatment, and patient empowerment,” said Dr. Kannan. “During residency, I had the opportunity to rotate through the MS Institute, and it left a lasting impression on me. What I remember most was the truly interdisciplinary approach to patient care. I saw neurologists, rehabilitation physicians, therapists, psychologists, nurses, and social workers working seamlessly together toward common goals for each patient rather than functioning in separate silos. Shepherd Center offers a unique opportunity to practice medicine in a setting that aligns closely with my values.”

Jacqueline Rosenthal, M.D., medical director of the Andrew C. Carlos Multiple Sclerosis Institute at Shepherd Center, echoed Dr. Kannan’s sentiments on collaboration and patient-centered care.

“Dr. Kannan brings a remarkable breadth of experience in the care of individuals living with multiple sclerosis, along with a deeply collaborative, patient-centered approach,” she says. “Her commitment to partnering with patients and working across disciplines aligns seamlessly with the values of our program. We are excited to welcome Dr. Kannan to the team and are confident she will make a meaningful impact on our patients and our community.”

Dr. Kannan is originally from Mobile, Alabama. When she’s not at work, she enjoys spending time with friends and family, including her dogs, Baron and Charlie, backpacking, volunteering with the Appalachian Trail Conservancy to help maintain trails, and attending concerts.

Neurologist Cole Crowson, M.D., recently joined the staff of the Andrew C. Carlos Multiple Sclerosis Institute at Shepherd Center.

A graduate of Wake Forest University, Dr. Crowson earned his medical degree from the University of Alabama at Birmingham School of Medicine, followed by a residency in neurology at the University of Virginia Medical Center, and a fellowship in multiple sclerosis and neuroimmunology at Oregon Health Science University. He is board-certified in neurology by the American Board of Psychiatry and Neurology.

“Shepherd Center has a long-standing commitment to excellence in providing comprehensive, compassionate care with state-of-the-art technology for our patients' benefit,” said Dr. Crowson. “I am honored to have the opportunity to work with the incredible teams here who use compassion, humor, and plenty of elbow grease to improve lives.”

“We are thrilled to welcome Dr. Crowson to our team,” said Jacqueline Rosenthal, M.D., medical director of the Andrew C. Carlos Multiple Sclerosis Institute at Shepherd Center. “His compassionate approach and collaborative personality make him a valuable addition. He is dedicated to truly hearing patients’ experiences and staying at the forefront of advances in treatment, which reflects the high standard of care we strive to provide.”

When he’s not at work, Dr. Crowson enjoys dragging friends to concerts, attempting Gordon Ramsay recipes, being a proud uncle to his niece and nephews, entertaining his Greyhound, and getting as much mountain air as possible.

Both Elizabeth and Paul learned some of these practices through their participation in a clinical trials pilot study at Shepherd Center. The study, funded by the Samsky Spine and Pain Research Fund, aimed to explore the feasibility and acceptability of a mindfulness meditation training program and to determine whether it could lead to improved ability to cope with pain and increased health-related quality of life outcomes. Having the tools to help manage frustrating calls and heavy traffic was a bonus.

Since breaking three vertebrae and sustaining other injuries in a fall about eight years ago, Elizabeth has experienced chronic pain. Her doctor’s warning to be careful, coupled with a fear of falling again, led her to stop many of her activities, which, in turn, led to isolation and depression at the loss of her socially and physically active life. She began coming to The Dean Stroud Spine and Pain Institute about a year ago, participating in physical therapy and adaptive yoga with great results. When she heard about the Mindfulness-Meditation Study, she knew she’d like to give it a try. 

“Because I want to get better. It's mindfulness and yoga, and I thought, ‘There's something here,’” she recalls. “I knew how much the yoga had helped, so I thought, ‘Well, more ways to look at something, more ways to move.’ It's just been incredible.”

Paul has been a patient at the Andrew C. Carlos Multiple Sclerosis Institute for about 20 years and has participated in research at Shepherd in the past. He was already curious about meditation, so when Erica Sutton, MA, CRC, clinical research coordinator at the Virginia Crawford Research Institute at Shepherd Center and principal investigator for the 12-week study, asked if he’d like to participate, he was in. 

“I have been on the fringes of trying to understand meditation and what it does,” says Paul. “Then Erica, out of the blue, called. ‘Hey, Paul, I was thinking about you. You said you always want to participate in things, and I think I have the right choice for you here — it's called mindful meditation.’”

Sutton, who practices meditation herself and holds two clinical meditation certifications, says she wanted to introduce people to its benefits. 

“I built a protocol based around meditation, and for people who are new to meditation and mindfulness, I wanted to show some of the different ways that people can engage in these mindful practices.”

Connecting and Reflecting

Participants in the program attended weekly classes at Shepherd Center and a weekly virtual support group session for eight weeks, followed by four weeks of practicing on their own, during which they could continue to attend virtual sessions. 

During each class, Sutton and her colleague, Alexandra Juarez, EP, RYT 200 HR, introduced participants to a variety of meditation and mindfulness practices, including visual meditation, sound baths, breathing techniques, guided body scans, and mindful eating.

Sutton and Juarez intentionally included time in each session for participants to catch up, share reflections on the tools they’d learned about, and connect with one another — a practice Elizabeth found especially meaningful. 

“Being able to talk to people … sharing how we handle it mentally, emotionally, and physically, even though all our stuff is different, has been a really important part of the mindfulness group,” she says.  

“Part of the benefit of having the study in person is that they get to have a social connection as well, and they really do enjoy that,” says Sutton. “Being able to see people with different diagnoses and to come together collectively with the same goal in mind has been a beautiful process.”

Between classes and during the four weeks of independent practice, participants kept journals documenting the mindful meditation they tried throughout the week and their reflections on the practice. 

“At the end of the study, we will use the diaries to collect those analyses to see if there were any improvements in areas of their overall well-being,” Sutton explains. “We're looking at any changes, primarily in the relationship to pain, so that's something that's important about this study. 

Although we targeted people with chronic neuropathic pain, it was not because we were looking to cure anything, but to build a better relationship with how they navigate and manage life with chronic pain. So, we're looking at their relationship with pain and overall quality of life. Was there any improvement with that? And then of course the safety and efficacy of the study.”

And Sutton hopes that this pilot study of 10 participants will lead to something bigger.

“It's a feasibility study. We're taking this hypothesis, and we're testing it in a small group with the hope that we can conduct more research on a larger scale, and thus translate that into clinical practice.” 

A Variety of Tools

Paul says he has noticed a change in his stress levels and energy.

“I'm like, ‘Am I really noticing that much of a difference that fast?’” he reflects. “My pain levels have gone down from like a six to a two. … I'm sleeping seven hours very easily. I'm in a deeper sleep. … I’m waking up with a lot of energy.”

And he’s even been able to use some of the relaxation techniques he’s learned instead of taking pain medication. 

“Through all the different techniques I've learned, I don't need it. When I feel that pain going across my shoulders or down my spine or my lower back or even on my leg, I'll just do a nervous system reset, and it's been working,” he says.

Elizabeth says learning so many different forms of meditation has been very helpful. 

“I might have known a bit of here and there, but to be very thoughtful, if I'm in pain, let me try this. And finding out which things work for me,” she explains. “Each class was a focus on a different way of meditating. I've known my whole life, ‘Oh, meditation is good,’ and I’d try it, and my mind gets too busy somewhere, and I just haven't been able to meditate. So, learning which ways to meditate has been so important — which ones work for me.”

“It's been very rewarding to hear the feedback and watch what tools they use,” Sutton says. “What we teach is that there's no right or wrong. It's a personal practice, and what's important is that they are making the space to carve out that time for themselves and to use whatever feels best for them in the moment.”

Paul also appreciates having a variety of tools to try. 

“I've used every single technique, and I found it very beneficial. It's a
healing of the soul, in my opinion,” Paul says. “I feel like when you're doing these things, you find yourself, you really get in touch with yourself, with your body, and it's been refreshing.”

Elizabeth says her daughter has noticed how she’s becoming more of her old self again, getting out, reconnecting with friends and family, and engaging in life.

“It's just progress every day,” Elizabeth says. “It has been life changing.” 

If you’d like to find out more about research at Shepherd Center, visit https://shepherd.org/research/redefining-rehab/find-studies/

Written by Ruth Underwood
 

Neurologist Jacqueline Rosenthal, M.D., has been promoted to the role of medical director of the Andrew C. Carlos Multiple Sclerosis Institute at Shepherd Center.

“I am very pleased that Dr. Jackie Rosenthal will serve as the medical director for the MS program,” said Michael Yochelson, M.D., MBA, chief medical officer at Shepherd Center. “She has great strengths, both clinically and administratively, and is well-suited to take on her new role.”

Dr. Rosenthal joined Shepherd Center in 2019, working in the MS Institute and serving as the founding program director of Shepherd’s Neuroimmunology and Multiple Sclerosis Fellowship. She actively participates in clinical research and has collaborated with various MS committees and workgroups to advance MS education and increase awareness of the disease.

“I am excited to step into this new role and am incredibly grateful for the support and mentorship that has led me here,” said Dr. Rosenthal. “I look forward to continuing to work with my colleagues in providing innovative, collaborative, and comprehensive MS care to our patients.”

Dr. Rosenthal earned her undergraduate degree from Xavier University of Louisiana. She is a graduate of Morehouse School of Medicine and completed her neurology residency at Madigan Army Medical Center. She practiced general neurology at Martin Army Community Hospital, where she developed a special interest in patients with multiple sclerosis and other neuroimmunology conditions. After separating from the U.S. Army, she completed a neuroimmunology fellowship at the Atlanta VA Medical Center and Emory Multiple Sclerosis Clinic, during which her primary research focused on examining neurodegenerative biomarkers of cognitive dysfunction in patients with multiple sclerosis.

Dr. Rosenthal assumes the role of medical director as Ben Thrower, M.D., who joined Shepherd in 2001, plans to retire later this year.

Outside of patient care and clinical research activities, she enjoys spending time with her husband and two young sons.

His mother, Eula Carlos, pressed him to visit Shepherd Center. She was friends with Alana Shepherd and knew the hospital had innovative treatments and top-notch clinicians. John was reluctant, but eventually, he met with neurologist Ben Thrower, M.D. The two clicked immediately. 

“We were so grateful because when John was first diagnosed, there was nothing. There were no drugs, there were no therapies,” Elaine says. “Going from nothing at all to a center that encompasses everything a patient could need . . . it makes all the difference.” 

Dr. Thrower and the MS team helped John with his MS symptoms and flare-ups. When Eula’s husband died, she wanted to do something in his honor and give back to the program that helped their son. So, she donated the money to rename the MS Institute to the Andrew C. Carlos Multiple Sclerosis Institute. 

The family has continued Eula’s legacy of generosity. John and Elaine supported the start of the Eula C. and Andrew C. Carlos Multiple Sclerosis Rehabilitation and Wellness Program in 2013. The program offers occupational, physical, and speech therapy, exercise classes, community outings, and educational opportunities to help people understand and live well with their MS diagnoses. 

The family’s reach at Shepherd extends beyond the MS Institute. John served as a co-chair for the Pursuing Possible campaign, raising money to increase patient access and improve the patient and family experience. Elaine and their daughters, Angela Carlos and Kari Dunn, helped chair the 2022 Legendary Party. Kari is also a member of the Foundation Board of Trustees, and Elaine has been involved in the Shepherd Center Auxiliary. 

“I would do anything for Shepherd that’s within my realm,” Elaine says. “They’ve done so much for my family, and for any family in need.”

Written by Erin Kenney

This story is an excerpt from “Mission Moments: 50 Years of Rebuilding Lives One Moment at a Time,” a book celebrating Shepherd’s 50th anniversary in 2025. 

“I wrapped my mind around it,” Greta says of the news that the symptoms she’d been experiencing — extreme fatigue, dizziness, pain, and weakness throughout her body — were caused by MS. “But I didn’t wallow — the condition was not going to take over my life.”

It took a few months to get the diagnosis. She received hypotheses from doctors but no real answers and nothing to relieve her symptoms.

“I had to cut back my teaching as it was difficult to move,” she recalls. “I stopped going to the gym. It was a scary and stressful time because no one had any answers.”

Last September, she visited another doctor who suspected MS. An MRI confirmed that diagnosis.

“I was actually relieved,” Greta says. “I knew what I was dealing with, and I could move toward progress.”

Greta sought treatment at the Andrew C. Carlos Multiple Sclerosis Institute at Shepherd Center, impressed by their holistic approach to care.

“MS is something I’m going to have the rest of my life,” she says. “I wanted a place that could give me a whole cadre of care.”

Greta began regular physical and occupational therapy, incorporated stretching into her routine, and was careful to eat a healthy diet and get plenty of sleep.

“I’m very coachable,” Greta says. “Tell me what to do, and I will do it faithfully with as much effort as I can. I felt empowered to improve.”

Greta also works out at Shepherd Center’s ProMotion Fitness Center, taking exercise classes tailored to people with MS. Her hard work and dedication have paid off; she’s seen improvements in her strength, mobility, and balance.

She has adapted her work schedule, and now teaches at an indoor facility, which helps her avoid the heat. She’s cut back on teaching but expanded her business in other ways that are not as physically demanding. She walks with a walking stick to help with balance.

She is grateful for the MS Institute.

“MS can be overwhelming,” Greta says, “especially if you don’t have a place where you can get physical and emotional support. Shepherd Center does that. Everything you need is right there. It is a life-changing, life-affirming place.”

Written by Sara Baxter

MS is a neurological disorder that can lead to significant mobility impairments. For example, people with MS often experience muscle weakness, spasticity, balance impairments, and fatigue, which may impair walking ability and can lead to an increased risk of falls. In fact, studies report that 50-70% of people with MS experience at least one fall over a six-month period. The consequences of falls can be significant, including physical injury, fear, and reduced independence.

“The current tools we have available to measure disability and walking function can only be used in the clinic,” says Brad Willingham, Ph.D., director of MS research at Shepherd Center's Virginia C. Crawford Research Institute. “This makes it difficult to measure changes that occur in patients between visits to the clinic, and it can take several months or years to detect changes in mobility associated with the progression of disability.”

To solve this challenge, Shepherd Center is partnering with Sensoria Health, a preeminent developer of innovative smart garments, software, and wearable systems, to develop and apply new technologies to advance the precision of care for people with MS.

“There are many wearable sensors on the market today that have greatly expanded our ability to evaluate patients in the home and the community,” Davide Vigano, Sensoria Health CEO and co-founder says, “What makes Sensoria’s approach to wearables particularly innovative and useful is the integration of microelectronics and textile sensors into comfortable garments and footwear such as shirts, socks, and other accessories that we wear every day. Our approach offers a truly wearable solution that seamlessly incorporates health monitoring technology into our everyday lives.”

Sensoria Health’s smart textile technology enables more accurate and precise measurement by allowing sensors to be placed nearly anywhere on the body. For example, Sensoria Health has recently created a system that measures walking function using smart socks that are infused with proprietary textile pressure sensors. These smart socks communicate wirelessly to a custom-developed mobile application, Sensoria® Walk, designed to measure gait impairments. While Sensoria smart socks feel and fit like regular socks, they can measure walking patterns in great detail and automatically send information to healthcare professionals via a privacy-compliant cloud software system.

“Measuring walking patterns, or gait, is an important part of assessing clinical disability in people with MS, but this measurement has been historically limited to in-clinic measurements that require direct supervision or the use of large, expensive equipment,” Willingham says. “Our partnership with Sensoria Health is focused on exploring how to leverage cutting-edge sensor technology, such as smart socks, to expand clinical evaluation into daily life. Such advancements may lead to more responsive treatment strategies and new scientific discoveries related to how MS impacts walking in real-world environments.”

The Complexity of MS

MS is notoriously complex, affecting each individual differently. Dr. Rosenthal describes the disease's impact:

"It affects the brain but also the entire central nervous system — the brain, the spinal cord, or the optic nerves. Anywhere along that pathway is where MS can affect you as a patient."

Individual Journeys

Everyone's journey with MS is unique, and Dr. Rosenthal stresses the importance of an individualized approach:

"It affects everyone differently. People are terrified because they assume the worst. They think, ‘I’ll need a wheelchair, or I can't carry out these plans I had, or my life is over.’ I encourage patients to know that life is not over. It may look different moving forward, but it's far from over. Life is still entirely possible. Just because they're diagnosed with MS doesn't mean they have to be fully characterized by the diagnosis."

Activity and Engagement

Physical and community engagement are critical aspects of managing MS. Dr. Rosenthal advises her patients to stay active:

"Remaining physically active is crucial, and while that may look a little different compared to someone who doesn't have MS based on whether there are disabilities or not, staying active is staying healthy. And we want people with MS to stay involved in the community. Being actively engaged with other people is really important."

Mental Health Considerations

An MS diagnosis can have significant mental health implications. Dr. Rosenthal elaborates:

"I encourage my patients to avoid social isolation and pay more attention to their mood and mental health because dealing with certain adjustments of the MS diagnosis can be a lot to deal with.”

Navigating Healthcare

Creating a supportive healthcare environment is critical. Dr. Rosenthal highlights:

"Find a healthcare team that you gel with because it will be a lifelong journey. Make sure you can ask all your questions and express your concerns. You want to feel like you're being listened to and respected and that you can understand how the disease impacts you as a patient."

Recognizing Symptoms

Dr. Rosenthal emphasizes the importance of recognizing early symptoms and seeking medical attention:

"A lot of people are diagnosed late. We want to shorten the window between disease onset and diagnosis as best we can. So, any unexplainable neurologic symptoms need to be thoroughly examined. Vision changes and loss of function in an arm or leg where it's not working well, weak, or not coordinating well, are often the first symptoms."

The Future of MS Treatment

Dr. Rosenthal remains optimistic about advances in the treatment of MS:

“There's no cure for MS at this time. MS is so complicated in terms of what leads to disease manifestation. There are many different things [researchers are looking into] that could lead to new treatment options, and it does look promising.”

Viral Links to MS

Recent research has focused on the Epstein-Barr virus's role in MS. Dr. Rosenthal discusses this emerging field:

“Researchers are looking at the role Epstein-Barr plays in the development of MS and the role it plays in the chronic manifestations of MS. From a prevention standpoint, they are investigating whether preventing people from getting that virus, could help prevent a subset of people from ever developing MS.”

Interview by Dominique McPhearson

That changed in 2017, a few years after moving from her native Philadelphia to Atlanta, when she first met Ben Thrower, M.D., medical director of Shepherd Center’s Andrew C. Carlos Multiple Sclerosis Institute. After treating Cathy’s latest flare-up and updating her medications, Dr. Thrower recommended she join Shepherd Center’s MS Wellness Program.

Now a decade old, the program was one of the first in the nation to integrate all aspects of wellness — fitness, nutrition, mental health — into a comprehensive, yet customized, approach for people with MS.

“For the first time, I learned how I can actively fight MS,” Cathy says. “And I fight it by keeping my body strong and less stressed. When I do that, it helps my strength, my flexibility, and my cognitive issues. I am probably more fit today at 69 than I was in my 40s!”

Ever since, Cathy has taken advantage of the MS Wellness Program’s slate of exercise and educational classes: whole-body exercise twice a week, pool classes, aerobics, yoga, and pilates.

“I never thought at my age I’d be starting pilates,” Cathy says with a laugh. “There are some things in the class I can’t do, but I try it all. And it’s all adaptive. It’s mat pilates. Seated yoga. No matter what stage you’re at, I’ve realized there’s always something you can do to fight MS and keep yourself going.”

Cathy thrives when she takes charge of her health. Shortly before moving to Atlanta in 2013, she decided to get serious about losing the weight she’d put on due to her physical challenges. She began walking two miles a day and eating healthier. It took four years, but she lost more than 100 pounds.

Unfortunately, in 2018, the combination of her MS-related spasticity and the arthritis in her knees robbed Cathy of those long walks. The loss took a toll on her emotionally. So, Cathy did something else she hadn’t done before; she talked to a staff psychologist at Shepherd Center about how MS was affecting her mentally.

“I was kind of resistant because I can usually talk things out myself,” Cathy says. “But she helped me understand that I was really grieving the loss of those long-distance walks. I had used those walks to figure things out in my mind. They helped me mentally as much as physically. So, I came up with new strategies for thinking through things, and my counselor directed me to a new aerobics program to help replace the walks to some degree.”

Thankfully, there’s far more that Cathy can do, thanks to the wellness regimen her team built just for her. Using a walker has helped keep her mobile and on her feet. She spends a month over the holidays in London, where her daughter Robyn lives. She’s active in Atlanta’s MS community. And she enjoys seeing plays and trying new restaurants around Atlanta with her friends — including Clinton, her partner of six years.

“We lived in the same building, and he would always stop and talk to me,” Cathy says. “Six years ago, we started talking for real one day, and we’ve been together ever since. He grew up on a farm in southwest Georgia, and I’m a city girl from West Philly, just like the Fresh Prince of Bel-Air. So, we have a lot of fun together.”

 Written by Phillip Jordan          

“We're positioned as an innovation hub because we are leaders in the field. The Innovation Institute is a natural extension of that – giving us more capabilities, space, and resources to foster ingenuity,” says Deborah Backus, PT, Ph.D., FACRM, Shepherd Center’s vice president of research and innovation. “We collaborate with like-minded partners to advance rehabilitation medicine and find better, more efficient ways of delivering care to improve the lives of the people we serve.”

The new 30,000-square-foot Innovation Institute, which will occupy the top floor of the Marcus Center for Advanced Rehabilitation on Shepherd Center’s main campus and is slated to open in 2025, will be a hub for collaboration, allowing Shepherd researchers to form more of these robust partnerships to advance patient care. The following are just a few of Shepherd’s partnerships that are improving patients’ and their families’ lives.

Virtual Visits

In 2020, Shepherd Center’s Recreation Therapy Program partnered with Aetos Imaging, a technology company that takes scans of real-world locations such as restaurants, stores, and stadiums. Then, they create a 3D digital replica of the location. Shepherd’s recreation therapists label the scans, flagging potential barriers that people using wheelchairs, for instance, may need to consider when visiting the venue — including locations of accessible entrances, table or counter height, or type of flooring. The scans are invaluable for patients and care partners who are anxious about navigating life outside Shepherd. Therapists also use the images as a follow-up after an outing to cover anything a patient or caregiver might have missed during training sessions.

Kelly Edens, CTRS, recreation therapy manager at Shepherd, compares the experience to playing a video game.

“It's a tool to provide education for patients and families to get from A to B on outings to places like a doctor's office, a library, a church, or a stadium. Reviewing the scans lets patients sharpen problem-solving skills, prepare for outings, and even advocate for themselves. We never want a former patient to avoid going somewhere just because they use a wheelchair. We want them to have access to their community,” she explains.

Connor Offutt, CEO of Aetos Imaging, says that working with Shepherd Center to help patients rebuild their lives resonates with the company’s core values and allows Aetos to explore a different application of the technology.

“People are increasingly using the Aetos Operate platform to reintegrate within their communities and gain confidence in the real world. Like Shepherd Center, it’s our hope — and responsibility — to utilize technology in ways that benefit our neighbors,” he says.

Accessible Wellness Content

Another innovative partnership that builds community and allows Shepherd clinicians to reach patients after they return home is Shepherd’s partnership with burnalong®, an online platform that offers on-demand health and wellness tools. The hospital and online wellness platform are collaborating to create and distribute specialty programming that makes wellness accessible to all.

Shepherd’s highly trained specialists are developing live and on-demand content geared toward people with spinal cord injury, brain injury, stroke, spine and chronic pain, multiple sclerosis, and other neurological conditions. Currently, Shepherd patients, staff, and Burnalong users can access the classes.

“The great thing is that these classes span across all our specialties and are appropriate for many neurological diagnoses and patients who we serve at Shepherd,” says Marina Moldavskiy, ACRP-CP, Shepherd Center’s tele-wellness program manager and exercise physiologist.

Among the more than 50,000 classes are yoga, exercise, and financial wellness courses, among others, for people of all abilities.

“Alongside the unparalleled range of classes and programs, one of the biggest things that sets Burnalong apart is the social experience. You can see and hear each other live. You can join communities. It ensures people get the support they need,” says Daniel Freedman, president of commercial health and fitness, Tivity Health, and co-founder of Burnalong. 

“We are always thinking of ways to empower our patients before they return home,” Moldavskiy says. “When our patients are at Shepherd, there’s always a rehabilitation professional there to guide them or give them information. We hope this platform can help them feel empowered to continue when they leave our walls.” 

While Burnalong™ is creating an inclusive community, it also opens opportunities for further research. Shepherd Center’s Virginia C. Crawford Research Institute is piloting two studies to better understand the program’s benefits. One focuses on people with multiple sclerosis (MS). If you are interested in participating in MS research, scan the QR code for more information.  

A second study focuses on people who have sustained an acquired brain injury (ABI) and have been discharged from a hospital-based ABI program. The purpose of the study, conducted in collaboration with Moody Neurorehabilitation Institute in Texas, is to evaluate the potential efficacy of tele-wellness delivered through Burnalong™. For more information on ABI research or to volunteer, contact Erica Sutton at 404-367-1305 or erica.sutton@shepherd.org.

Written by Lindsey Rieben and Ruth Underwood

In December 2023, Brad Willingham, Ph.D., a clinical research scientist at Shepherd Center's Virginia C. Crawford Research Institute, was named one of the International Progressive MS Alliance’s Innovations in Well-Being Award recipients. The highly competitive award funds the first phase of a large-scale program of research to identify and implement solutions to some of the most challenging symptoms that people with progressive MS experience, with the potential for further funding based on results to be reported in mid-2025.

Dr. Willingham is using data collected from wearable sensors to allow clinicians to monitor symptoms in people with progressive multiple sclerosis. Clinicians can use the data to improve treatment plans for patients remotely, in real-time.  

1. A Better Frame of Mind

From a terrifying fall on an Icelandic mountain to rising above his doubts — Daniel Hund credits Shepherd Center with putting him on a more positive path to the future.

2. Still Dancing and Dreaming

In her desire to help others, Mo Maxwell has always wanted to be a nurse. Her experience at Shepherd Center may help that dream come true. 

3. From Uncertainty to Clarity

Iliana Bermudez says the care of the Andrew C. Carlos Multiple Sclerosis Institute staff at Shepherd Center helped her understand and manage her autoimmune disease, neuromyelitis optica (NMO).

4. Persevering Through PTSD: A Veteran’s Journey

At Shepherd Center’s SHARE Military Initiative, Marine Corps veteran, Michael Cataldi, learned to cope with the symptoms of a traumatic brain injury and post-traumatic stress disorder (PTSD).

5. From Idea to App

With hard work and a willingness to take a risk, Brandon Winfield turned his experience after sustaining a spinal cord injury into an app that helps people with accessibility needs find new places to explore.

6. Finding Balance

Care from Shepherd Center’s Complex Concussion Clinic helps Jana Smith get back to what she loves.

7. Making Progress – and a Proposal: Kaytlin Marquess’ Story

During rehabilitation for a spinal cord injury at Shepherd Center, Kaytlin Marquess’ therapy team helped her pop the question.

8. Construction Connections: Taylor Nester’s Story

As project manager for Shepherd Center’s Arthur M. Blank Family Residences building, Taylor Nester is helping build hope for others like Shepherd helped build hope for her dad.

9. Dr. Woody Morgan Returns to Shepherd Center – This Time as a Doctor. 

Former spinal cord injury patient Woody Morgan returned to Shepherd this year, where he now leads the Comprehensive Rehabilitation Unit.

10. Finding Community

After Amy Ewing sustained a spinal cord injury, she found a community she has returned to again and again for a physical and emotional boost. 

Twelve years ago, at 28, when Iliana was living and working in Connecticut, she felt a pain in her neck that wouldn’t go away. Then, she noticed a tingling feeling in her hands. Her doctor suspected a pinched nerve and scheduled an MRI, but while Iliana waited for the results, her left arm began to feel heavy. Her mom, who came for a visit and to check on her, noticed Iliana’s leg was dragging when she walked.

“It happened really fast,” Iliana recalls. “Within a week, I was unable to move the left side of my body.”

Iliana was diagnosed with neuromyelitis optica (NMO), an autoimmune disease that causes inflammation of the spinal cord and optic nerves. She had difficulty walking and started to use a wheelchair. Knowing she would need help and support, she moved back to Atlanta to be closer to family. A neurologist recommended the Andrew C. Carlos Multiple Sclerosis Institute at Shepherd Center. There, she saw Ben Thrower, M.D., the medical director of the MS Institute.

“When it all happened, it was scary because I didn't really know what was going on. But Dr. Thrower was great. He helped me better understand NMO, and he said there was help. It made things easier. I have to say there was a before and after meeting Dr. Thrower. Before, it was a little confusing. Afterward, he made everything clear and calm,” Iliana explains.

Based on Dr. Thrower’s recommendations, Iliana began physical therapy. She also visits the MS Institute every six months to get an intravenous infusion of medication to reduce her NMO symptoms and see a member of the MS Institute team. Even though she only sees them every six months, she says many staff members are like family to her.

Iliana’s career led her to move with her family to Miami. With her symptoms in check, she is walking again and even enjoying spin classes. She has returned to the activities she loves – spending time with family, traveling, and working. Last year, her travel for work included trips to Tokyo, New Zealand, and Qatar, and she won a Sports Emmy® Award, her fourth!

But no matter where she goes, Iliana says she will continue to travel to Shepherd for treatment.

“If I move across the world, I will still come back to Shepherd Center because this place is amazing.”

 Written by Ruth Underwood

 Pursuing Possible with Shepherd Center

To support patient stories like this, please consider contributing to Shepherd Center's Pursuing Possible campaign. Click here to learn more.

“We are what’s called mirror twins,” Terry explains. “So, we are mirror images of each other. I’m a lefty, and she’s a righty, so if we held up our dominant hands, it would be like looking in a mirror. That’s how our symptoms presented, too.” 

It wasn’t until years later that Terry and Tamara would learn the cause of their symptoms – multiple sclerosis (MS). The emotional distress of their mother’s passing took a toll on their bodies, resulting in constant pain, visual changes, worsening fatigue, and body tingling. Still, it wasn’t until years later that Terry was diagnosed at 25, and Tamara was diagnosed at 30.

While the diagnosis was difficult, Terry and Tamara took a page from their mother’s book. Diagnosed at 33 with an aggressive form of cancer, their mother passed along her strength to her daughters.

“We were lucky to still be with her for 11 more years after her diagnosis,” Terry says. “She taught us to be resilient. She woke up every day with a smile on her face, so we woke up every day with a smile on our faces. That resiliency has gotten us a long way.”

When they were diagnosed, the twins were living across the country from one another; Tamara in San Francisco, California, and Terry in Atlanta, Georgia. Her primary care physician referred Terry to Shepherd Center’s Andrew C. Carlos Multiple Sclerosis Institute.

“That was my first experience of an MS center,” she says. “I remember being amazed because the nurse practitioner and doctor really listened. That’s part of what makes Shepherd so special — people really listen. It’s not like anywhere else.”

From there, Terry began taking part in Beyond Therapy®, an activity-based therapy program that aims to help people with a variety of neurological disorders improve their lifelong health and minimize secondary complications.

“I love Beyond Therapy,” Terry says. “I’m paralyzed from the waist down, so I don’t get upright often, but the Lokomat lets me get up and walk on a treadmill. I’m so grateful for that time and for the therapists there. They push you in such a kind way and always pivot based on where you are that day.”

While Terry continues her therapy with Shepherd Center in Atlanta, she stays close to her sister and the MS community through their website at twinscoast2coast.com and their social media channels. There, the twins create a safe space to share the stories, celebrations, and struggles of living with MS and advocate for people with the disease. They both volunteer with the Multiple Sclerosis Association of America, and Terry is a member of the Board of Trustees for the Georgia Multiple Sclerosis Society.

“At Twins Coast to Coast, our motto is to motivate, inspire, and educate,” says Terry. “We’ve lived with MS for so long that we can give back and give our experiences, and it means everything to be able to help someone else.”

 Written by Lindsey Rieben 

Tangie grew up in New Orleans, Louisiana, working hard to help contribute to her family’s expenses beginning at age 15. She always loved art and fashion and graduated in 2002 with a bachelor’s degree in fashion marketing from American InterContinental University. In 2011, she was pursuing her master’s degree in fine art at The Academy of Art University San Francisco when she suddenly lost vision in her left eye.

“I could no longer see or distinguish colors,” she says. “I’ve always been an artist and was getting my master’s so I could not lose my sight.”

Tangie’s ophthalmologist treated her for optic neuritis, a condition where inflammation damages the optic nerve. It can cause temporary vision loss in one eye and is a common symptom of multiple sclerosis (MS). Her ophthalmologist referred her to Emory for an MRI and a visit with a neurologist. There, Tangie was diagnosed with MS.

As a self-proclaimed “nerd,” Tangie began researching to learn as much as she could about MS, but since she and her husband were trying to have a baby, she did not start treatment.

“MS is a crazy thing, and when you’re pregnant, sometimes your body protects itself, and a lot of women feel great during pregnancy,” she explains. “That’s what happened to me. I had a great pregnancy, but after I had my son, my body felt like it was on fire, and my migraines came back.”

Tangie and her neurologist worked together to develop a treatment plan that worked for her. Three years after beginning treatment, Tangie’s neurologist retired, and she found another doctor who changed her treatment plan. At the same time, Tangie started a stressful new job in human resources (HR) and began to experience new symptoms of MS.

“I was doing the work of three people,” Tangie explains. “It was taking a toll on me health-wise, and I started to experience other symptoms. I was 36 and would come home from work with urine on my clothes because I couldn’t hold my bladder. I was dragging my leg. I couldn’t stay up and was no longer productive. That job told me not to come back until I got approval from my doctor.”

That’s when she found the Andrew C. Carlos Multiple Sclerosis Institute at Shepherd Center.

“I was skeptical at first because of my experience with my last neurologist, but from the phone calls to appointments, everyone has been kind and attentive,” she says. “None of the people at Shepherd Center have ever made me feel bad or embarrassed about any questions I ask. All of them have been consistently amazing.”

Now Tangie sees Jacqueline Rosenthal, M.D., at Shepherd. Tangie has a new treatment plan and a renewed focus on taking care of herself. She began finding new creative outlets, namely sewing.

“I knew I could not go back to the workforce, so that’s when I really started taking care of myself, and I learned how to sew,” she says.

She started by taking a class on sewing in zippers and simple skirts. From there, she stumbled on a YouTube channel that taught her how to make a clutch purse. She was immediately hooked, taking inspiration from when she worked as a manager at a Coach store.

“When I took that class, I remembered being in awe of all the details on the Coach bags,” she says. “Everything rushed back to me like, ‘You know how to do this. You love everything about handbags.’ I knew from that point on I had to make handbags, and they had to be leather.”

As driven as ever, Tangie researched until she found a vintage sewing machine that could sew leather and, later, a skiving machine, which removes excess material for two edges of leather that are meant to be joined together. From that point forward, Tangie was on a roll, and she continues to make leather bags by hand. She still receives care at the MS Institute, and the staff she initially met has now become like family.

“I don’t shake when I walk or fall like I used to,” Tangie says. “Shepherd Center has just been so amazing. The nurses there are like my big sisters. I love them from the bottom of my heart. We’ve just been in each other’s lives for so long. They ask about my family, and my family asks about them. You know the saying ‘It takes a village?’ That’s for real.”

You can check out Tangie’s handbag designs on her Instagram at @keane.koi!

Written by Lindsey Rieben

My role as the infusion coordinator involves helping patients get scheduled for their infusion, making sure the rooms are appropriately staffed, and administering infusions to patients. A key part of what I do is working with the pharmacy. A good portion of patients have to have medication shipped in from an outside pharmacy, so I coordinate that piece to make sure the medication is here when the patient arrives.

Why did you choose to come to Shepherd Center from New York?

I had a patient at the time in New York who had done his initial rehabilitation at Shepherd Center. I saw the progress he had made, and that put it on my radar as a place to work when I started looking for a job. Once I started looking, everything just lined up like it was meant for me. I started in outpatient urology at Shepherd Center because it was closer to my background in New York. I had previous experience in rehabilitation and spinal cord injuries, so Shepherd Center was the perfect place to transition to. I was there for about 2 ½ years before transferring to the Multiple Sclerosis Institute, and I’ve been here ever since.

Twenty years is a long time. What made you stay with Shepherd Center’s Andrew C. Carlos Multiple Sclerosis Institute? 

Well, for me, it was the learning. I love to learn, and I love to teach. So, when I got here, one of the neurologists took me under her wing, and she taught me everything about MS, A to Z. She taught me how to look at an MRI and know what I was looking at so I could understand the back side of things and be able to teach our patients. There’s a lot of teaching that goes on at Shepherd because everyone is starting their lives over again, whether it’s from a spinal cord injury or a disease. It’s a learning moment. So, because I enjoy learning and teaching, this was the best fit for me.

 What do you think makes the MS Institute special?

Our team has become one big family, the way the providers work with us and how we work together. We celebrate each other’s highs and lows and everything in between. We’ve watched each other’s children grow up. We’ve had so many celebrations or unfortunate gatherings, but we’ve always unified as a team to help each other. When I started at the Multiple Sclerosis Institute, there were just two of us for infusions at that time. We developed this atmosphere where even on days when we were too busy to speak to each other, we knew what the other one needed. That has carried over to our team of five nurses today. We work so well together. I think that’s what makes our department so special and such a fun place to work.

What has been your favorite day at work?

My 50^th birthday. I used to be a competitive bodybuilder, so I was known for always carrying around my gallon of water, and my diet was very precise. I still wanted to celebrate the day, so I brought in treats for everybody, and it turns out that four or five of my patients that day shared the same birthday! I loved that day because I was able to make it extra special for them. I told them, “I can’t eat all the goodies, but I want to celebrate with you!” So, that was a really great day.   

Except for a break during COVID, Donna and Doyle have maintained this routine since Donna joined the gym in 2014, and for Donna, who has multiple sclerosis (MS), it’s meant a lot.

“First of all, it means I can work out, and I can try to, by working out, stave off MS’s progression. I would hate to know where I would be if I couldn’t work out. And second of all, it gives me socialization, not just with Doyle but with the exercise physiologists too, but Doyle especially because he and I are giggling all the time,” Donna laughs. “It’s good for me mentally.”

ProMotion is a community gym open to people of all abilities. The Fitness Buddy program started in 2009 to give physical and emotional support to gym members who might need assistance with their workouts. 

“We had seen a pattern with some of our members — they stopped coming because they didn't have a caregiver, friend, or family member to help them work out. So, in trying to figure out how to circumvent that, we turned to Shepherd’s Volunteer Services for help,” says Lisa Eagen, BS, ACSM-CPT, lead exercise physiologist in Shepherd Center's ProMotion Fitness Center.

When the program began, Doyle, who had retired from AT&T, signed up to help.

“Despite the fact that I was the first volunteer, they wanted to continue the program for some reason — I guess they thought they could improve from their first volunteer,” Doyle jokes.

Now one of the many options available to Shepherd volunteers is serving as a fitness buddy.

Abby Cohen, a senior at Georgia Institute of Technology majoring in neuroscience, also volunteers.

“I was trying to figure out ways to get observation hours and learn more about the different avenues of physical therapy, and Shepherd seemed like a great place to do that,” she recalls.

The program is tailored to fit each gym member’s needs.

“Our first meeting is with the gym member, the volunteer, and a staff member. We figure out an exercise program for the gym member, train the volunteer to facilitate the workout, and once they're both comfortable with it, they set their schedule.” Eagen explains.

Having a buddy boosts accountability and encourages social interaction, another key to overall wellness. And according to the volunteers, the benefits run both ways.

“Volunteers have told me that being able to give back is meaningful. And they also learn about the challenges people in the disability community may face. Some Fitness Buddies have been real advocates for gym members,” Eagan explains.

“I think I get the most out of just seeing people give it their best shot, and I'm amazed, regardless of how many times I see it, at how much grit people possess. I've gotten a lot out of just being around that over the years,” Doyle says.

Abby appreciates the sense of community the Fitness Buddy program fosters.

“I think the ‘after’ of an intense event like an injury can be overlooked, and the fact that Shepherd continues to provide a community is something really special.”

And after nearly nine years of working out at ProMotion with Doyle as her fitness buddy, Donna heartily recommends trying the program.

“It has done me a world of good, and I think it can do anybody else a world of good, just to know there’s somebody there who cares about helping you and making whatever problems you have a little less of a problem. It’s a wonderful program.”

 Written by Ruth Underwood

By the time the career Air Force officer transferred to Shepherd Center in early 2020 for further evaluation, he was as frustrated as he was pessimistic.  

“Then I walk in, and everyone’s smiling, calling me by my name, and I’m thinking, ‘Come on, they can’t really be this happy,’” Angel says. “But whether they are or not, they bring that joy and kindness every time I come in. I can’t tell you how uplifting it is simply to go somewhere you’re valued, you’re welcomed — where you’re listened to.”

After meeting with Ben Thrower, M.D., medical director of the Andrew C. Carlos Multiple Sclerosis Institute at Shepherd Center, Angel got a new course of action to manage his MS and keep adverse side effects at bay. His care team also prescribed physical, occupational, and speech therapy at Shepherd Center. That holistic approach has helped to strengthen his muscles, combat foot drop issues, and address memory fog.

“I’m getting services at Shepherd Center that I literally couldn’t get anywhere else,” Angel says. “And they understand where I’m coming from because they work so extensively with veterans and service members.”

Ultimately, Angel says it’s not just Shepherd Center’s extensive resources and expertise that stand out.

“It’s how much they invest in you. It’s the amount of time you have with doctors. You’re not rushed. Staff members are always talking with each other, too. Everybody I work with at Shepherd Center is constantly collaborating on my case.”

The approach is paying off in the most important ways, starting with Angel’s service to his country. Angel is a C-17 program manager in the Air Force, based in Warner Robins, Georgia. He also serves as the executive officer for his unit, responsible for reviewing all military officer evaluations for his division chief.

“I still have my military career thanks to Shepherd Center,” Angel says. “There are good days and bad days. But with this treatment, I can still put in the hours necessary to meet mission requirements, despite my challenges with MS.”

Equally as important to Angel, he still has the energy and mobility to be a hands-on dad. He plays soccer and football with his children. And loves to cook their favorite family meal — smoked BBQ ribs and homemade macaroni and cheese.

“I want to do as much as I can with my kids and make it fun for them,” Angel says.

As for the future, he’s already considering a second career post-service.

“I’m thinking about being an MS patient navigator,” Angel says, “just to help other folks with MS better deal with it. My interest in that is completely due to what it’s meant for me to have all the amazing people at Shepherd Center on my side. I’d like to pay that back.”

Written by Phillip Jordan

Pursuing Possible with Shepherd Center

To support patient stories like this one, please consider contributing to Shepherd Center's Pursuing Possible campaign. 

Julia Nieves, who was diagnosed with multiple sclerosis (MS) in 2014, was looking for a way to deal with the physical and emotional challenges of living with the disease. 

She used to sew and draw when she was younger and reconnected with her creative side during the pandemic when she began working with an expressive arts therapist/coach. 

“Not only did I need an outlet to express myself, but I also wanted to create more space in my life for fun, laughter, and joy,” says Julia (who pronounces her name HOO-liah). 

In the last year, Julia has created paintings, quilts, photographs, and digital art that portray the various MS symptoms she feels, such as vertigo, “wobbliness” when walking, balance issues, and fatigue, all of which impact her daily life. She has even compiled this art onto her website, www.julianievesstudio.com. 

“Art has allowed me to make the un-seeable reality of living in my body visible first to myself and then to my family and friends,” Julia says. “Seeing a visual representation of what it feels like to be dizzy and off-balance that existed outside of my body was absolutely liberating for me! I immediately felt less alone.” 

Julia says the medium she uses on any given day depends on how she feels. On a “good day” with little fatigue and more energy, she might choose to sew or paint. On other days when she’s not feeling as strong, she usually draws, writes, or takes photos to use later in digital art. 

Being able to find solace in art is just another example of Julia’s “can do” attitude. 

When she was first diagnosed, a doctor in Raleigh, North Carolina – where she and her family lived at the time - told her that all she could hope for was to slow the “inevitable decline” due to MS. That was not a satisfactory answer for Julia. 

“I had a pity party for about a month,” Julia admits. “But then I decided I would not be in a war with my body. I started looking for a doctor who believed things were possible before they were declared impossible.” 

She found that in the staff of the Andrew C. Carlos MS Institute at Shepherd Center after she and her family moved to Atlanta in 2016. 

“Shepherd Center is a community of compassionate, innovative, and skilled people who believe in and work for miraculous transformation on behalf of the people they serve,” Julia says. “It is an amazing place.”

Written by Sara Baxter

No matter what type of exercise she chooses, Charlotte Anderson loves to get her blood pumping – for the obvious health benefits and for how it helps manage her multiple sclerosis (MS) symptoms. 

“For me, exercise just helps my body overall, and that helps me mentally,” she says. “I do high-intensity training three to four days a week. I love doing weights, and I love running. I feel great when I’m done.” 

MS is an unpredictable disease that occurs when the body’s own defense system attacks the myelin that protects the nerve fibers of the central nervous system. Charlotte explains that the disease can be physically and mentally draining. 

“I also sit and do brain exercises, and my brain gets fatigued,” she says. “I have this feeling of pressure in my head. It’s like a fog.” 

The staff at the Andrew C. Carlos Multiple Sclerosis Institute at Shepherd Center has been working with the 43-year-old Atlanta resident since March 2018. 

“I love everything Shepherd Center has to offer,” she says. “I love everyone there. It’s a great facility.” 

Charlotte’s MS first showed up when she experienced a seizure in 2016. Even after her diagnosis, she says, the symptoms were not that bad for the first four years. Now, she sometimes has pain from her knees to her feet that makes walking difficult and causes hand tremors, vision problems and cognitive difficulties. 

“My long-term memory is good,” she says. “But I could have a conversation with you today, and if you ask me about it tomorrow, I might only remember a little of it. Then six months from now, I would remember more.” 

What keeps her going is an indomitable spirit, a refusal to give in and the people she calls the highlights of her life: son Jalon, 25; daughter Chloe, 11; and granddaughter Khloe. 

In addition to regular speech, recreation and occupational therapy at Shepherd Center, Charlotte participates in two of the hospital’s research studies: One to learn more about the long-term effects of MS treatments like Ocrevus®, which she credits with slowing her symptoms, and one for measuring how effectively a new tool can evaluate MS symptoms. Lending her experience to studies like this makes her feel like she is taking control of fighting the disease. 

“If you let MS control your mental and emotional states, it wins,” she says. “And I refuse to let MS win.”

Written by Phil Kloer

That Ashley was able to resume hiking and exploring the North Georgia mountains just one year later – with her border collie, Izzy – is due, she says, to the medical care and support she received from Shepherd Center.

A “Type-A personality,” Ashley is not one to sit still. During the three months before her MS attack, for instance, she received her doctorate of veterinary medicine at the University of Florida, got married and moved to a new home in Georgia. Ashley believes the key to her recovery was that Shepherd Center staff convinced her to slow down and focus on herself. She took time off from her career as a general practice veterinarian and embraced physical therapy and activities available through the Eula C. & Andrew C. Carlos Multiple Sclerosis Rehabilitation and Wellness Program.

“Dr. (Ben) Thrower (medical director of the MS Institute at Shepherd Center) convinced me of the right treatment option, and that probably saved my life,” Ashley says. “After six months of treatments and rehabilitation, I got a huge energy boost.”

She also utilized her own motto: “Even if you can just get one percent improvement out of something, do it,” Ashley says. “If you make enough one-percent improvements, over time you’ll get somewhere.”

Today, Ashley still takes time for herself. In addition to hikes, she goes horseback riding weekly. She has also switched to part-time work, which led to a more fulfilling calling. Ashley is now working for a veterinary hospice and in-home animal euthanasia service called Lap of Love, where she guides families through end-of-life care for their pets.

“It’s so rewarding to bring peace to these situations and help prevent suffering,” she says. “This is definitely where I’m supposed to be. This is my career.”

Written by Phillip Jordan

The study, “Comparative Effectiveness of an Exercise Intervention Delivered via Telerehabilitation and Conventional Mode of Delivery,” will evaluate the effectiveness of different types of exercise programs for people with multiple sclerosis (MS). The project will compare exercise programs provided at gyms or rehabilitation facilities with a telerehabilitation program available to patients at home. The goal is to increase the accessibility and sustainability of exercise options for people with MS.

“People with MS often have decreased mobility that can lead to more disability and less physical activity and participation in daily life activities,” said Dr. Backus, whose research focuses on improving the health and function of people with MS.. “Though exercise has been shown to decrease symptoms of MS and improve mobility, many people with MS face obstacles to exercise such as inaccessibility, affordability, lack of knowledge and training, as well as symptoms of MS that can make exercising difficult.”

In addition to being co-principal investigator of the study, Dr. Motl, also developed the exercise program being evaluated in the study.

“This is an exciting partnership to evaluate whether telerehab delivery is as effective as facility-based delivery,” Dr. Motl said. “If it is, it has the potential to break down barriers to exercise for people in remote areas who do not have access to MS experts.”

At multiple sites, the project will enroll people with MS who are able to walk slowly. They will be assigned to one of two exercise groups – a facility-based exercise training (FET) or a telerehab exercise training (TET) group. In both cases, participants will receive evidence-based exercise guidelines and support. A group of participants will be in a gym or rehabilitation center (FET), and some will participate in the telerehab exercise training at their homes. Researchers will measure participants’ ability to walk, their perception of their mobility and symptoms and quality of life, as well as participants’ confidence level with exercising or participating in physical activities on their own.

“With the findings of this study, our goal is to develop tools to help educate people with MS, as well as caregivers, community providers, insurers and policymakers about different modes of exercise interventions to help them make educated choices about which one might be most beneficial for any given person with MS,” Dr. Backus explained. “That we are also evaluating the impact of choice on participant outcomes is a novel aspect of the study.”

Shepherd Center is the lead site for the study. Other collaborators include Kevin McCully, Ph.D., at the University of Georgia; Gary Cutter, Ph.D., at the University of Alabama at Birmingham; Jeffrey R. Hebert, PT, Ph.D., MSCS, at the University of Colorado; Francois Bethoux, M.D., at the Cleveland Clinic Mellen Foundation; Eduard Gappmaier, PT, Ph.D., at the University of Utah; Alexander Ng, Ph.D., at Marquette University; and, Robert McBurney, Ph.D., of the Accelerated Cure Project.

This innovative study was selected for funding through a PCORI funding announcement specifically focused on comparing the effectiveness of treatment options for people with MS. While there are a variety of therapies available to people with MS, input from a variety of stakeholders helped PCORI identify this as an important topic for research based on the lack of evidence available to help patients and other stakeholders choose among the available care options.

“This project was selected for PCORI funding for its potential to fill an important gap in our understanding of MS treatment,” said PCORI Executive Director Joe Selby, M.D., MPH. “It will provide useful information to help patients and their caregivers weigh the effectiveness of their care options. We look forward to following the study’s progress and working with Shepherd Center and its collaborators to share the results.”

Dr. Backus’ award has been approved pending completion of a business and programmatic review by PCORI staff and issuance of a formal award contract.

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. For more information about PCORI’s funding, visit www.pcori.org.

To help people with MS maintain or regain employment more readily, Shepherd Center, with its extensive experience treating people with MS, has been selected to help conduct a pioneering new study to identify the factors that either support or hinder someone’s ability to work after diagnosis. The ultimate goal is to use this information to design useful interventions and programs, tailor vocational counseling, and educate policymakers and employers to help people with MS stay employed for as long as possible.

“It is one of the most comprehensive studies of MS and employment to date,” says James Krause, Ph.D., principal investigator for this study and long time Shepherd Center research collaborator who is a professor and associate dean for research at the College of Health Professions at the Medical University of South Carolina (MUSC). “We are not just focusing on whether someone is employed. Rather, we’re investigating all aspects of employment – things like earnings, promotions, job satisfaction – and we’re trying to see what circumstances lead to the best employment outcomes throughout the lifetime, not just a single point in time.”

Researchers are administering surveys to the more than 1,050 people treated for MS at Shepherd Center. What’s unique, Dr. Krause says, is that this study sample represents people with all types of MS, no matter what their present employment status is or where they are in the progression of their disease. Researchers will examine detailed demographic and employment information, as well as symptoms, how they may play a role, if patients disclose they have MS, acceptance in the workplace, if accommodations have been made (for fatigue, physical adjustments, etc.) and other factors. The survey was developed based on feedback from 74 patients with MS who took part in focus groups conducted at Shepherd Center, MUSC, and in four Ohio cities and towns (Cleveland, Kent, Akron, and Youngstown) through the MS Society in 2015.

This study is part of a larger effort called Successful Employment and Quality Work Life after Severe Disability. It is an extension of Dr. Krause’s ongoing research in spinal cord injury (SCI), which Deborah Backus, PT, Ph.D., director of MS research at Shepherd Center, says has already led to meaningful changes for patients – something she hopes can be replicated for the MS community, too. The research is being funded by the National Institute for Disability, Independent Living, and Rehabilitation Research; the MS project is part of a larger grant to Virginia Commonwealth University.

Unlike SCI in which the physical disability can be obvious, MS symptoms can be unpredictable and invisible, especially when someone is in remission or does not have physical disability.

“It makes it difficult for people to understand what people with MS are up against,” Dr. Backus says.

Also, people with MS struggle over whether to tell their employer about their diagnosis. On one hand, they worry they will be demoted or lose their job entirely if they choose to disclose their diagnosis. On the other hand, if they do not disclose their condition, they run the risk of not getting the accommodations they need to successfully perform their job and, as Dr. Krause explains, their symptoms may be misconstrued as lack of interest or motivation.

“It can be a vicious cycle. For example, a person may lose some mobility, limiting their access to the areas in which they work; or they experience fatigue, but they don’t have planned rest periods at work that may allow them to be more productive. Then they can’t perform their job and may lose it,” Dr. Backus says.

The decision about whether to continue working or to go back to work is often made too soon, experts say. The issue is that once someone goes on disability, they rarely can get back into the workforce, Dr. Krause notes.

“With any disability, employment can be pushed aside in the short-term,” Dr. Krause says. “But over the long term, employment is fundamental to adult life, and if you can’t engage in it, there’s going to be a void. We want to give people every chance possible to maintain that employment for as long as possible.”

Researchers are optimistic that the results of this study will help people with MS continue to thrive in the workplace by pinpointing the drivers of success. Results will be reported in 2017 and will include a comparison with SCI.

“It’s an exciting collaboration, and it ties into everything we are doing at Shepherd Center to care for the whole person,” Dr. Backus says.

For more information, click here.

By Amanda Crowe, MPH

At Shepherd Center, in the Andrew C. Carlos Multiple Sclerosis Institute, he discovered life was far from over.

“From day one, it’s just been a blessing,” Trey says. “And I couldn’t have a better doctor than Dr. [Ben] Thrower. He’s supportive and encouraging. It’s rare when you think of your doctor as a friend.”

Over the past eight-plus years, as he’s adjusted to his MS symptoms, he’s learned a lot about himself – and others.

“I’m stronger than I thought I was,” he says. “I’m filled with more gratitude and the ability to live in the present. But I’ve also learned, especially from my fellow patients at Shepherd Center, that there’s great resilience in the human spirit.”

That resilience inspired Trey to marry his musical creativity with a desire to be a voice for those on a similar journey. Over the past two years, he’s posted videos on his own YouTube channel that mix thoughts about his daily MS challenges with inspirational songs he’s written.

“These videos are an attempt to make the journey a little bit easier for someone else because I’m so thankful for the people who have done that for me,” Trey says. “This is a gift that I can give.”

The videos are available on his “Trey Farmer” YouTube channel. Trey has also released an EP album and several singles on iTunes. (To find his videos on each platform, search “Trey Farmer”). The first song he posted remains one of his favorites. Trey believes the lyrics to “I Love The Way” reinforce his message that, “We can all make it.”

I’m breathing in the air of peace / I’m breathing in the air of much-needed relief / Life is taking over / I’m feeling a little bit better / I love the way it feels to be alive / I love the way everything feels so right when I can start again…

By Phillip Jordan
 

Arts specialists Phoebe Whisnant, M.A., ATR, and Alex Chukabarah, M.S., who oversee the art therapy program work with all patient populations: spinal cord injury (SCI), acquired brain injury (ABI), as well as those in the SHARE Military Initiative and Multiple Sclerosis Institute. They also try to accommodate every artistic interest.

“We use all kinds of mediums, and if we don’t have it, we do everything we can to either get it while the patient is still at Shepherd or provide resources to help them find it when they get home,” Chukabarah says. “We may not be able to meet every need, but if there’s a way we can get the materials, we will.”

Art therapy is part of Shepherd Center’s expansive Recreation Therapy (RT) Department and shares the overall goal of rec therapy – helping patients return to what they were doing before their injury while also discovering new interests.

Beyond serving as an outlet for creative expression, art therapy also has practical purposes. For example, if a patient is working on a specific goal, such as upper-extremity range of motion, painting can be a helpful intervention. Art therapy also is beneficial for patients who are looking to learn a new activity after their injury. They can learn how to use adaptive equipment, such as a mouth stick or a paintbrush attached to a wrist cuff. Art therapy also has positive psychological and emotional benefits, including increased self-esteem and self-awareness.

“We use art materials to express ideas, thoughts and feelings,” Chukabarah says. “Art is a nonverbal form of communication. We don’t interpret the art, but we can go back and reflect on the piece. We help them gain insight by asking the right questions.”

Chukabarah remembers a patient with a spinal cord injury who came in the art room and wanted to paint, even though he had never painted before.

“He chose a picture of a lion,” she recalls. “He was hesitant and struggled in the beginning, but as he gained control and strength, his mood brightened as the painting progressed. The process drastically improved his self-image. It was inspiring to see.”

In 2015, the department created a visiting artist program in which patients who are artists return to teach workshops.

“Not only do they get an art lesson, but it’s a great form of peer support,” Whisnant says. “They see someone thriving who has been in the exact same position that they are. It’s inspiring for them, and it’s so rewarding for us to see that.”

Whisnant and Chukabarah say that the benefits of the art therapy program include the life-affirming pleasure of making art, as well as the opportunity for patients to discover new solutions to problems and creative coping strategies that can be applied to all facets of their lives. All of it is part of the process, which, they say, they get just as much out of as the budding artists.

“The patients here are on a journey to rebuild their lives,” Whisnant says, “We are proud to be part of that journey.”

By Sara Baxter
 

Marcia never missed a year on the trail. Along the way, she sought shelter from hurricanes in the mid-Atlantic and conquered the rocky hardness of Maine and New Hampshire. She also survived five surgeries for breast cancer in 2005. And she discovered that the growing numbness in her feet and her difficulty keeping balance weren’t due only to the trail: It was multiple sclerosis (MS).

In 2008, halfway through Marcia’s Appalachian Trail travels, she met with Ben Thrower, M.D., medical director of Shepherd Center’s Andrew C. Carlos MS Institute, to craft a plan of attack to control her symptoms – a holistic plan that included medication, a healthy diet and staying active. The hike continued.

“The key to doing well with MS is to have a team of doctors who listen and meet your needs,” Marcia says. “Dr. Thrower and his team are tops at that, and I am so fortunate to still have them in my circle. They taught me that I may have MS, but MS does not have me!”

She also had the support of family and friends, including her trail mate, Beth Abel. Hikers on the Appalachian Trail pick up trail names. Beth’s was Spirit; Marcia’s Smasher. In their final stretches on the trail this year, the pair stopped and talked more often to other hikers. Spirit handed out tiny wooden doves representing peace. Smasher shared multi-colored butterfly beads that symbolized new beginnings.

“For a lot of hikers, the Trail is all about finding those new beginnings, a new purpose,” Marcia says. “It was so special to connect with people from all walks of life. This whole adventure was such a challenge, of mind, body, spirit. Don’t think about what you can’t do, but what you can.”                                             

Written by Phillip Jordan
 

Balancing on their right knees, left feet forward, backs straight, hands together overhead, they held a yoga pose called the Warrior to the accompaniment of propulsive rock and roll from a CD player on the floor: “I ain’t gonna live forever/I just want to live while I’m alive/It’s… my… life…”

Traditionalists may blanch at doing yoga to Bon Jovi, but the sentiment could not have been more appropriate. The class members have multiple sclerosis (MS) and are engaged in an experiment that is unique and possibly pioneering.

“We’ve got the symptom management thing under control,” says Erin Boyt, 40, of Lawrenceville, Ga. “But now what? You have MS, OK. How are you gonna live your life?”

MS is a progressive disease in which the body attacks nerve coverings, causing scarring in the brain and spinal cord. It is often diagnosed when patients are in their 30s. It is two to three times more common in women than men.

Unlike spinal cord and brain injuries, however, “there are a lot of unknowns,” says Christine Manella, PT, LMT, MCMT, therapy manager at Shepherd Center’s Andrew C. Carlos MS Institute. “Pain and fatigue can be issues, but not everyone has them. There can be cognitive and memory issues, or motor and sensory problems. It’s different for different people. Once you’re diagnosed, you might go 30 years and just need a cane. Or you could be in a wheelchair. It’s a wait-and-see kind of game, and it’s anxiety-producing.”

For many years, the treatment for MS was medication. Anything more strenuous than mild walking was considered dangerous because it could elevate the core body temperature and trigger a relapse.

But recent studies found that exercise can help patients gain strength and control spasticity without aggravating their symptoms. In 2012, the MS Institute started the Eula C. and Andrew C. Carlos Multiple Sclerosis Rehabilitation and Wellness Program to help patients slow the progression of the disease and improve the quality of their lives.

Many who came to the program were older, had more disability and were in wheelchairs. But some, like Erin, functioned at a high physical level, and the initial classes didn’t meet their needs.

“These are folks who walk around just like you or me ,” says Blake Burdett, BS, the program’s exercise physiologist. “They would do well at a gym, but the staff at gyms don’t know how to handle MS. You have to take their limitations into consideration.”

In spring 2014, Shepherd Center started a program specifically for high-functioning people with MS. It includes aquatics, Pilates, weight training, balance training and yoga. The classes are held in air-conditioned rooms, cooling vests are available and they are supervised. Data is kept on all participants and is presented at MS professional meetings so other healthcare professionals can improve their practices.

“I can’t say for sure that we’re the only ones in the world with this kind of program, but I’m not aware of another,” Burdett says.

“It’s been a real gift that Shepherd has this program,” Erin says. “I don’t know why it doesn’t exist in a lot of places. It’s the best thing if you have MS, no matter what level of ability or disability. I feel I can push myself in the classes because I’m around people who understand my breaking point. I’m not always good at regulating myself. Now, I have the confidence to exercise and get stronger without worrying that I’ll wind up in the hospital.”

“This isn’t your typical spin class,” says Kris White, 37, of Smyrna, Ga. “You have to know your body and make sure you stay cool. But some activities are structured so that we work as a team, and that’s been very fulfilling – helping each other, urging each other on. There’s no judgment and no pressure. If you’re not able to do the reps or you’re tired that day, it’s OK. Everyone understands where you are.”

They have also developed a sense of accountability to each other.

“I may not feel like going, but I don’t want to let the group down by not going,” Kris says. “And, usually, I feel better once I get there.”

The women have bonded to the point that they attend other classes together and socialize away from the hospital.

“It’s made me feel normal again,” says Roxanne Waring, 54, of Atlanta. “I might not be able to do everything, but I feel good about myself. And having great friendships makes me happier and physically makes me feel better. It’s the best thing that’s happened to me. The exercise, the staff, the people in the group…I tell people that Shepherd Center has changed my life.”

To learn more about MS Rehabilitation and Wellness Program, contact exercise physiologist Blake Burdett at 404-603-4916.

By John Christensen
 

“MS is a chronic disease, and it can be a tough disease,” she says. “When I hear people enjoying themselves and being glad to be here, it is very gratifying.”

“Here” is the Eula C. & Andrew C. Carlos MS Wellness and Rehabilitation Center within the MS Institute, just one of the components of the comprehensive approach Shepherd Center takes in treating MS, a disease of the central nervous system. Created in 2013 with a generous gift from the Carlos Family, the program was one of the first in the nation to integrate all aspects of wellness – fitness, nutrition and education – into a single approach tailored specifically for people with MS.

“The goal of the program is to improve the function, health, wellness and quality of life in people with MS,” Manella says, adding that participants in the program can get fitness assessments and take part in fitness classes tailored to people with MS. The program also offers lecture-style classes on topics ranging from nutrition to management of stress and fatigue.

The Wellness Center will get even more of a boost this fall when funds raised from The Legendary Party, Shepherd’s premier fundraising event, will benefit the program. The funds will cover personal training scholarships, the purchase of additional equipment, an additional exercise physiologist and new research projects.

Membership in the MS Wellness Program includes a full gym membership at Shepherd’s ProMotion Fitness Center. In addition to services offered through ProMotion, MS program participants can take specialized classes in cardiovascular exercise, core conditioning and lower-extremity strength.

The key word is specialized. For example, because people with MS tend to get overheated more easily, the classes are equipped with fans and ice vests to make it more comfortable and safer for them to exercise. Small class sizes – with just six to eight participants – allow instructors to pace the class differently and monitor each participant more closely to make sure their needs are being met. Classes are offered in balance, yoga, Pilates, agility, core strength and cardio. There’s even an exercise class for people who are newly diagnosed.

“Our goal is to help every individual who has MS to be active,” Manella says. “Sometimes, they think exercise is not an option. We can show them it is and tailor our classes to their needs.” Beyond physical wellness, Manella says there is also a social aspect to the program, in coming together at the center, as well as participating in group activities twice a month. Those include games to enhance fine motor skills, bridge and sewing groups.

Research is another important component in both the clinical and wellness programs within the MS Institute. “We evaluate different types of interventions that can be beneficial, ways to deliver those interventions – including managing the barriers – and how it impacts the disease itself,” says Deborah Backus, PT, Ph.D., FACRM, director of research in the MS Institute. “We are fortunate that we can engage a large number of our patients in research, and we can study their outcomes. Because of that, we can take a multi-faceted approach to research that allows us to take the best approaches to treatment and rehabilitation.”

For more information, visit: shepherd.org/ms

Written by Sara Baxter
Photos by Gary Meek
 

Understandably, people living with MS often have their sights set on new and proven ways to feel better. Researchers at Shepherd Center are paving the way to find practical solutions and interventions to help – both in the clinic and through an increasingly robust research program.

“Although disease-modifying therapies help slow the progression of disability, they don’t treat the symptoms or address the remaining deficits due to MS,” says Deborah Backus, Ph.D., PT, director of MS research at the Eula C. and Andrew C. Carlos Multiple Sclerosis Rehabilitation and Wellness Program founded at Shepherd Center in 2012. “Our rehabilitation and wellness research is looking at ways to keep people as healthy and as functional as possible for as long as possible.”

In just a few short years, the program that was created with the expressed purpose of establishing and pushing forward MS wellness research has already made a name for itself. Dr. Backus and her team have initiated several research studies being conducted at Shepherd Center and with collaborators around the world.

“We are building on the pilot studies initially funded by the Carlos family, and the results are leading to more funding and international recognition,” says Dr. Backus, adding the National Multiple Sclerosis Society is among the new funders. “We are also beginning to publish and disseminate our research so we can start impacting clinical care.”

Some recent research highlights include studies to assess the potential benefits of functional electrical stimulation (FES) bike training, therapeutic massage and assessments for driving safety.

Functional Electrical Stimulation (FES) Cycling

Dr. Backus and her team conducted a four-week trial in collaboration with the University of Georgia that showed FES bike training three times a week appears to be safe for people with more progressive forms of MS. They are analyzing outcomes, but the initial data suggests that stimulating the legs to move in a rhythmical way may benefit these patients.

“We saw changes in their muscles, and it also significantly reduced pain and fatigue,” Dr. Backus says. “For people using a wheelchair, they improved in their cycling in a short period of time, suggesting they have the capacity to improve.”

More research is needed to see how this might relate to function. So far, 15 people have completed this study, and up to 20 more will be enrolled in 2015.

Massage and MS

Human touch can have a powerful effect on health, and research has found it may even promote healing. Therapeutic massage is known to help relax muscles, enhance range of motion, improve blood flow and reduce stress. Although as many as one-third of individuals with MS reportedly use massage as an adjunct to their medical treatment, there has been very little research on this approach.

Now, thanks to funding from the Massage Therapy Foundation, the research team at Shepherd Center is investigating whether and how routine massage can help improve pain, spasticity and overall quality of life among people with MS. Twenty-five participants are receiving standardized massages – for the same amount of time, number of strokes, parts of the body worked on – for one hour a week for six weeks.

Driving Safety

Being able to drive gives people a sense of independence, but there are often factors that can limit someone’s ability to drive safely. Shepherd Center researchers are conducting a study, called “Fitness to Drive,” in partnership with Georgia Regents University. This program is ongoing and has collected data for nearly 100 people with MS to date. The ultimate goal is to identify ways to rehabilitate driving to allow people with MS to retain the ability to drive safely.

For information about these and other studies, click here.

Written by Amanda Crowe, MA, MPH

She had resolved to cope as best she could with the tightness and spasticity that made it difficult to walk and the extreme fatigue that overcame her. But at an MS support group meeting, she saw a pamphlet that gave her hope. Shepherd Center was recruiting patients for clinical trials.

Lisa, 57, a former nurse who lives in Midland, Ga., near Columbus, joined a clinical trial for Ampyra (dalfampridine), an oral medicine designed to improve conduction in damaged nerves. Half of the enrolled patients received a placebo, or sugar pill, but she could tell immediately she was taking the medication. She felt more stable and fluid. She even began walking for exercise.

“It was so beneficial,” says Lisa, who has secondary progressive MS and still takes Ampyra, which was approved by the U.S. Food and Drug Administration (FDA) in 2010. “I could maintain my lifestyle and not get worse.”

Nine of the 13 new MS drugs that have been developed in the past 18 years were studied at Shepherd Center, giving patients early access to new therapies. Shepherd played a key role in advancing MS treatment. But most importantly, the MS research brought opportunity where there was none.

“Research has given us the ability to change the course of a once-untreatable disease,” says Ben Thrower, M.D., medical director of the Andrew C. Carlos Multiple Sclerosis Institute at Shepherd Center.

Issi Clesson, RN, MSCN, CCRP, director of clinical research, recalls when she began caring for MS patients as a nurse in 1990. “We literally had nothing to offer patients,” she says.

But soon, Shepherd Center was able to provide Copaxone (copolymer-1 or glatiramer acetate) through a clinical trial. The synthetic protein blocks T-cells that damage myelin, the coating of nerve fibers. For the first time, a drug was able to slow the progression of the disease and prevent relapses. Copaxone received approval from the FDA in 1996.

Beta interferon drugs were developed at about the same time. Shepherd Center was a clinical trial site for three such drugs:  Avonex, Betaseron and Rebif.

Researchers continued to explore different approaches to stop the immune system from attacking myelin. Tysabri (natalizumab) is a monoclonal antibody that blocks immune cells from crossing the blood-brain barrier and entering the brain and spinal cord. Shepherd patients were among the first to receive Tysabri infusions as part of a post-approval clinical trial.

“It was effective in limiting the number of relapses, as well as in preventing the development of new or enlarging lesions visible on the MRI,” Clesson says. While not a cure, it is a valuable tool to prevent disease progression.

More recent drugs, such as Gilenya (fingolimod) and Tecfidera (dimethyl fumarate), offer similar benefits but as oral drugs, rather than injections or infusions. Shepherd Center was part of clinical trials for both. In all clinical trials, Shepherd carefully screens patients and monitors participants for side effects.

“MS is so individualized. What works for one person may not work for another,” says Carlyn Kappy, RD, LD, CCRP, Shepherd Center research quality manager. “That’s why having plenty of options is so important.”

Lisa recently completed a trial with Tcelna, a biopharmaceutical made from T-cells in her own blood. The trial isn’t yet complete, but she is upbeat about the results. And she feels thankful for Shepherd Center’s contribution to the research.

“Hopefully, they’ll come up with something that will help regenerate the nerves,” she says. “I’m very positive about all the efforts they’re putting into trying to find a cure.”

MS Drugs that Were Studied at Shepherd Center

• Amypyra (dalfampridine) approved by the FDA in 2010
• Avonex (interferon beta-1a) approved in 1996
• Betaseron (interferon beta-1b) approved in 1993
• Copaxone (copolymer-1 or glatiramer acetate) approved in 1996
• Gilenya (fingolimod) approved in 2010
• Lemtrada (alemtuzumab) approved in 2014
• Rebif (interferon beta-1a) approved in 2002
• Tecfidera (dimethyl fumarate) approved in 2013
• Tysabri (natalizumab) approved in 2006 (reintroduced)

Written by Michele Cohen Marill

“I knew when we came to rest on a big oak tree I was doomed. I couldn’t feel anything,” says Diane, who sustained an incomplete C-5 spinal cord injury (SCI). Initially treated at the University of Florida Health Shands Trauma Center, she was soon transferred to Shepherd Center for intensive rehabilitation.

“We did our research, and it became very clear Shepherd was where I needed to be,” Diane says.

Shepherd Center is known for its clinical expertise and innovative therapy, providing care for people who sustain spinal cord and traumatic brain injury, including the most complex cases. But as Diane attests, the supportive care offered at Shepherd goes far beyond the day-to-day management of patients’ injuries. The doctors and clinical teams get to know patients and families on a personal level, as well, often developing long-term relationships.

The Human Element of Clinical Care

“The human element of our job is so important,” explains Anna Elmers, M.D., a Shepherd Center staff physiatrist who treated Diane. “We see patients at their lowest lows, and in many cases, we see them going back to school or work, getting married and living a meaningful life – sometimes achieving more than we would have ever expected.”

After nine weeks at Shepherd Center, Diane was able to return home and within days was back to work running a land surveying company.

“I’ve made tremendous progress, and the groundwork was laid at Shepherd Center,” says Diane, noting that the hospital continues to have an impact on her life.

Diane’s therapy team took a special interest in helping her son Travis as he dealt with his mom’s injury. The team educated Travis about the injury. Now, he has so much confidence in Dr. Elmers that he consults with her to make sure his mom’s local therapy is on target.

“We get to know people in a personal way and are able to see things from the family’s perspective,” says Dr. Elmers, who started as a resident at Shepherd Center in 2006. In 2009, she joined the medical staff full time as an attending physician with her own treatment team. “I couldn’t think of a more rewarding field.”

The opportunity to help restore hope and independence to patients is also a motivating factor for Gerald Bilsky, M.D., a Shepherd Center physiatrist who has followed the progress of many of his patients during the 17 years he’s practiced at the hospital. “That’s what it’s all about,” he says. “It’s why we do what we do. We hopefully can make a difference in someone’s life because they certainly didn’t plan to come here.”

Dr. Bilsky tells patients their life isn’t over after a brain or spinal cord injury. He recalls a patient he treated 15 years ago; he recently attended that patient’s wedding. Dr. Bilsky often receives pictures from patients of high school or college graduations, trips and everyday life. “That’s really cool,” Dr. Bilsky says. “There is a level of caring at Shepherd that is different than a typical hospital. There is something different here.”

Andrew Dennison, M.D., another Shepherd Center physiatrist, agrees.

“It’s spiritually rewarding for me to be able to go to work everyday and help people get through what is among the most difficult of situations,” he says.

Dr. Dennison treats people with brain injuries – often from blunt trauma or motor vehicle accidents – and was drawn to the field because it combines neurology and non-surgical orthopedics and because of the unmet need. “Not many people have the expertise or training to put all the pieces together,” he says. “These are patients with unique needs, and I’m afraid some could fall through the cracks without a good advocate.”

Often, his job involves finding medical issues that might have been missed during the initial critical care treatment provided in a trauma center. Of course, because Dr. Dennison takes care of people during the acute phase of their brain injury rehabilitation, he says, “A lot of times, my patients are just starting to remember who I am before they leave the inpatient environment.”

It’s why he tries to see patients beyond their injury and get to know who they were before their injury. “I try to be as open and honest as I can, providing hope, but also giving them a true understanding of what they are facing,” Dr. Dennison says.

Staff physiatrist Ford Vox, M.D., notes, “Our cases are sometimes very tragic, but it’s rewarding to see recoveries, and that’s what keeps you going.” He recalls one patient who was barely able to communicate or move as an inpatient, but is now back at work full time.

Shepherd Center’s caring and compassionate family atmosphere left the biggest impression on Diane. “My treatment team members had other patients to care for, but in my eyes, I was the only one they were focused on,” she says. “They had such patience and listened to every detail. So often when you talk to doctors, they are on one level and you’re on another, and they can be unapproachable.” But she remembers fondly that whenever Dr. Elmers would see her in the hospital’s cafeteria, she would come up to her and ask how she was feeling.

Unparalleled Expertise in a Culture of Caring

Because doctors at Shepherd Center treat such a high volume of patients, their expertise is second-to-none. For this reason, they are often sought after as a resource.

“We get calls from doctors around the country asking basic questions about brain and spinal cord injury,” Dr. Elmers says. “What we do is so specialized that it’s not as intuitive to others.”

The medical staff is so specialized, in fact, that Drs. Dennison and Vox are among the first physicians in the country –and only two of six in Georgia –to be certified in brain injury medicine. Drs. Dennison and Vox have both been asked to write questions for the exam that was initiated as a joint venture through the American Board of Physical Medicine and Rehabilitation and the American Board of Psychiatry and Neurology– part of a board certification that emerged out of a growing need for doctors with a certain level of expertise in treating brain injury.

“It now really means something to call yourself a brain injury specialist,” Dr. Vox says. “This certification will undoubtedly help advance the field and benefit patients.”

Erik Shaw, D.O., a physiatrist at the Shepherd Pain Institute, plays a specialized role, as well, treating chronic pain that often occurs due to an injury or degenerative disease. Like other Shepherd Center physicians, he works to help patients gain the highest possible quality of life and functional ability.

“A lot of these patients don’t have many other places to go,” Dr. Shaw says. “Most of our patients have some level of pain, and that needs to be addressed. Here, we understand the different disease states, how they progress over time and what to watch for.”

Unlike some other rehabilitation environments, Shepherd Center treats people early in their road to recovery.

“We have expertise in very complex cases at very early stages of injury,” Dr. Vox says. “We will take semi-conscious patients who may be on a ventilator and still need a surgery or two – patients who at other centers would still be under the care of a trauma or critical care physician and losing valuable rehabilitation time.”

Data consistently show better outcomes for traumatic injury patients who get an early start in individualized and intensive rehabilitation and therapy.

“It’s to the patient’s advantage to get to rehabilitation sooner,” Dr. Vox says. “Many patients are treated on autopilot in an acute-care setting, but at Shepherd Center, we can anticipate and coordinate care, and focus on neurotrauma, too.”

Teams at Shepherd Center take a holistic view in treating patients. They consider what medications may be good to use or omit, and when it makes sense to intervene with a procedure and other clinical options.

Shepherd patients may receive care from an internist, neurosurgeon and rehabilitation physician. Consulting physicians further extend the variety of surgical and medical subspecialities available to patients to address any medical issues – nerve damage, leaks of brain fluid, etc. – that may arise. This helps avoid transfers back to an acute-care hospital and disruptions in rehabilitation.

While there is a wealth of expertise at Shepherd Center, it’s the culture that sets the hospital apart, physicians say.

“I tell patients it’s like going to Disneyland,” Dr. Elmers explains. “It can be very overwhelming at first, and there’s all this stuff you need to do and you don’t know where to start. But help is all around. And the staff is so happy – from therapists to technicians to the people picking up your lunch tray and cleaning your bathroom.”

Humor and laughter are often part of the healing process.

“We know what we are dealing with is serious stuff, but we don’t take ourselves too seriously,” Dr. Bilsky says. “We try to laugh and be creative in our approach. It doesn’t mitigate the nature of what we do, but most people don’t thrive on serious every minute. I think people want and thrive on normalcy. You have to be here to see it and feel it.”

A Team Approach

Of course, the doctors at Shepherd Center are only part of the integrated mosaic of care providers that are part of every patient’s experience. Treatment teams typically include nurses, therapists, a counselor, dietitian, exercise specialist and a case manager.

“Our doctors have a lot of expertise, but what makes Shepherd Center so special is how the treatment team members work together,” Dr. Elmers says. “I’ve learned so much from the nurses and therapists.”

Dr. Vox says the teams “work closely and well together, and we have a lot of tools at our disposal to be to treat patients and optimize their recovery.”

Paying it Forward

“We try to help patients be as independent as possible and push them to new heights, and they often pay it forward to friends, family and society,” Dr. Bilsky says.

In fact, the mother of one of his patients, who is now married and living on the West Coast, returns to Shepherd Center every year to bring gift baskets and goodies to patients.

Dr. Elmers notes that many nurses and therapists go the extra mile without expecting any recognition. She knows of staff members who have donated gift cards to patients in need. And many hospital staff members contribute to the hospital’s annual employee giving campaign.

“The Shepherd family must be so proud of this incredible place they created,” Dr. Elmers adds. “We have a lot of expertise, but it’s the culture that sets us apart.”

Written by Amanda Crowe, MA, MPH
Photos by Louie Favorite, Gary Meek and Phil Skinner

Thanks to two $50,000 grants from the AT&T Corporate Accessibility Technology Office (CATO), the Rehabilitation Engineering Research Center for Wireless Technologies (Wireless RERC) -- a partnership between researchers in Shepherd Center’s Virginia C. Crawford Research Institute and Georgia Tech -- is offering Wireless Independence Now workshops that show people with disabilities how to set up and use the accessibility features on their phones and tablets.

“There is a huge awareness gap for consumers trying to set up a device for their needs,” says Ben Lippincott, project director, Industry and Consumer Education/Outreach/Support, Wireless RERC at Shepherd Center. “The devices themselves have become so powerful, and the variety and number of user-configurable settings can be daunting to a user with a disability.”

Some of these features allow users to simply wave a hand over the screen to unlock it, use voice commands to send texts, email or surf the Internet, or enable a switch controller for those with no upper-extremity movement.

“The cell phone is a very liberating device,” says John Morris, project director for User-Centered Research at the Wireless RERC. “It can allow people with disabilities to enjoy greater social participation and give them access to technology that can be critical to employment.”

The 90-minute workshops – free to attendees regardless of their service provider – give an overview of the accessibility and assistive technology features found on the latest versions of Apple’s IOS 8 and Google’s Android 5.0. The last 30 minutes consists of hands-on training where attendees can ask questions about their own phones, or try out the latest versions of new phones.

Lippincott and a team from CATO have created five different presentations that highlight accessibility features to different disability needs, such as those with mobility/dexterity, hearing, vision or cognitive impairments.

In 2014, the group held 17 workshops in six cities and reached more than 450 people. In 2015, with the second grant, the team hopes to visit 10 cities and reach more than 2,000 people. Cities scheduled so far include San Diego, Los Angeles, Phoenix, New York, Dallas and Austin.

For updates, visit, wirelessrerc.org.

Written by Sara Baxter

Since kicking off the tour last July in Houston – home to President George H.W. Bush who signed ADA into law – the bus has traveled more than 15,000 miles to 24 states.

Several stops are planned in Atlanta this spring:

• May 10: Evening reception at the National Center for Civil and Human Rights (NCCHR), part of the National ADA Symposium –adasymposium.org
• May 15-16: Mobility Expo – North Atlanta Trade Center – themobilityexpo.com
• May 27: Summer Institute on Theology and Disability at Georgia State University – bethesdainstitute.org/theology
• June 12: Shepherd Center
• June 13: ADA25 Festival at NCCHR, part of the Society for Disability Studies Conference – Hyatt Regency Atlanta – disstudies.org

The above events are open to anyone who would like to see the bus.

The bus is wrapped in photos taken before the signing of the ADA, as well as images of the signing itself. Also, it features a four-panel display on the history of self-advocacy courtesy of the Museum of disABILITY History in Buffalo, a handmade quilt, local and national milestones, new displays on the 2006-2007 Road to Freedom Tour and information about the ADA Legacy Project.

“I personally believe we’ve all benefitted from this law, not just those with disabilities,” says Mark Johnson, director of advocacy at Shepherd Center. “By taking part in the tour, people will have an opportunity to learn about the history and legacy of the ADA. Together we can preserve, celebrate and educate not only this generation but also the next by remembering our collective past and preparing for what’s to come.”

While anniversaries are times for celebration and reflection, Johnson says there is still work to be done. In this spirit, the ADA Legacy Project is promoting the SixBy‘15 campaign (sixbyfifteen.org), a project of the Association of University Centers on Disabilities and other national disability rights organizations to advance six national goals by the end of 2015. Those goals are focused on employment, community living, education, transition, healthy living and early childhood.

“These are hearty goals for continued advocacy,” Johnson says, “and this is where the ADA’s legacy is greater than the ADA Generation: It’s about the next generation, too.”

 For more information about the Legacy Project and the 25th Anniversary, visit adalegacy.com.

Written by Sara Baxter

It would be a destination wedding, on a beach. Besides daydreaming about her future groom, the beach location was the most important part of Lauren’s early dreams. And she carried that romantic vision in her mind for years.

“I had envisioned getting married at the beach ever since I started thinking about weddings,” Lauren says. “I couldn’t imagine it happening anywhere else.”

But on a busy Friday afternoon in July 2011, Lauren was shot as she crossed a street in Midtown Atlanta, sustaining a T-10 spinal cord injury. The act of random violence changed her life in a way that could have shattered her oceanside wedding dream, were she not so strong and determined.

Lauren spent months at Shepherd Center learning to adjust to life with a spinal cord injury. It was during those months that the boyfriend she had been dating since high school asked her to marry him.

The answer, of course, was yes. Suddenly, Lauren found herself planning a wedding and thinking about that idyllic beach setting again. But this time she was thinking about how to make that dream come true amid new physical realities.

“The beach is probably the least accessible place for a person in a wheelchair, but I couldn’t imagine it happening anywhere else. I was pretty determined. Luckily, we were able to pull it off,” she says. “Compromises are inevitable, but do not give up your dreams.”

Lauren’s wedding involved a specially built ramp that led from the beach’s entry point down to where she and fiancé Anel exchanged vows, allowing her to comfortably navigate sandy terrain.

The message and moral of Lauren’s story is an important one. Many of Shepherd Center’s patients are faced with the challenge of planning a wedding that includes some kind of special accommodations for accessibility.

Finding a comfortable venue can be one of the most significant and obvious challenges.

Is all of the terrain at a facility accessible, or just small portions of it? Where will the reception be held? Are dining tables tall enough to allow wheelchairs to slide under them?

Scott Keithley and his new wife Jean Manki looked at numerous venues, including historical homes, gardens and restaurants. Though he has C-7 quadriplegia that imposes accessibility requirements, Scott did not get discouraged during the search, but instead learned a great deal.

“Many venues say they’re accessible on their websites or in their advertisements. But don’t take them at their word. It’s important to go see for yourself,” he says. “A lot of places figure if they don’t have a lot of stairs, then they are accessible, but they’re not thinking it all the way through.”

When it comes to historical properties, there are often architectural challenges, Scott says. Because such sites often seek to preserve their original look, guests in wheelchairs are less likely to be able to access the entire property.

Scott and his fiancée were also adamant about having tables that could comfortably be wheeled under, allowing guests to eat without having to balance a plate on their lap.

Scott paid special attention to the seating arrangements, ensuring there was plenty of space between tables to circulate around the room.

“You want to be able to get around and spend time with all of your guests,” he says.

Ultimately, Scott and Jean chose a restaurant in a mixed-use office complex that had both indoor and outdoor seating, and an extensive courtyard.

About 55 people attended. The entire affair lasted about five hours, with a DJ spinning tunes and music from Scott’s iPod. At one point, Scott’s new wife surprised him by singing “Make You Feel My Love” by Adele.

“My vision was to be able to put together all of her friends and all of my friends – people who did not know each other, but knew of each other – and to have a relaxed celebration of our love, with really great food. And I really felt we achieved that,” he says.

For Kelley Simoneaux, who has a T-12 spinal cord injury, it was important that the day not be centered around her wheelchair. Achieving that goal required several thoughtful adjustments.

“I didn’t want my husband to have to bend to give me our first kiss, those kinds of things,” she says.

During the ceremony, Kelley’s groom, Bradlee, sat in a chair across from his bride, able to look her in the eye and lean over easily to kiss her.

The couple also selected a very small wedding cake, so it would not tower over Kelley while the couple cut the first slice.

“For us, it was about: ‘How can we make subtle adaptations to the structure of the wedding so no one is really focused on my wheelchair?’ And we were able to accomplish that. I enjoyed the day and everyone else did, too,” Kelley says.

A fastidious planner, Liz Ouligian of Gainesville, Fla., had her wedding date and all its important details finalized. And then destiny intervened.

During a drive home from Jacksonville, Fla., she and her fiancé were involved in a car accident that left Liz with a T-12 incomplete spinal cord injury.

The wedding had to be set aside – at least temporarily.

“My first thought was I still wanted to keep my wedding date. I will be sitting down but still able to go to my wedding,” she says. “But about one month before my wedding date, I realized it just wasn’t going to happen. I was so upset. I was so big on wedding planning and getting everything done. I had this date and all of the favors engraved with the date.”

Canceling that original date, however, has given Liz time to address some important new questions – such as how to shop for a wedding dress in a wheelchair and how to make the dress look its best when being worn in a sitting position.

There are experts at bridal shops who can help alter a dress, allowing it to look the way it should, Liz says. There are also changes that can be made to the wheelchair to protect the wedding gown.

Liz has not yet rescheduled her wedding date. She is working to clear one last hurdle before she will allow herself to finalize a date again.

Holding tight to her original wedding dreams, Liz wants to be able to walk down the aisle and to also share a first dance with her husband, as well as a dance with her father.

Making that happen has required her to work tirelessly to regain enough strength in her legs to walk with forearm crutches.

“Once I complete one walk down the aisle on my own, then I will set a new date,” she says. “I’m just waiting to get to that point.”

Written by Mia Taylor

Researchers at Shepherd Center are investigating whether routine massage can help improve pain, spasticity and overall quality of life among people with multiple sclerosis (MS). This small study – one of the first to look at how massage might influence these measures in MS – will enroll 25 participants. Individuals will receive standardized massages – for the same amount of time, number of strokes, parts of the body worked on – for one hour a week for six weeks.

“MS is a progressive disease, and the symptoms don’t go away,” says Deborah Backus, Ph.D., director of MS research at Shepherd Center and the study’s principal investigator. “Many of the symptoms can actually exacerbate peoples’ disability and dramatically affect their quality of life.”

MS is a disease of the central nervous system in which the immune system starts attacking the protective sheath that covers the nerves. This ultimately disrupts communication between the brain and body, and can be debilitating. It is estimated that 30 to 90 percent of people with MS report pain, and most (80 percent) have spasticity that is disruptive to everyday function, personal care and mobility.

In this study, researchers are collecting and analyzing data from clinical tools and self-reported questionnaires to gauge changes in pain and spasticity levels, as well as quality-of-life measures both before and after massage.

Shavonne Thurman, 39, of Atlanta, Ga., was among the first to sign up and participate in the study. Having completed her participation in the study, she now misses her weekly sessions during which massage therapists applied long strokes and light pressure – characteristic of Swedish-based massage techniques.

“I’ve always had extreme tightness in my calves – so much so that it’s hard to think about anything else,” she says. “But during the massage, I was able to let that go and not think about my MS. It actually relaxed my legs so much, I had to sit for a minute before getting up because they were like jelly.”

Shavonne was diagnosed with MS in 1999, and it has affected her life incredibly, she says. She walks with forearm crutches, but feels fortunate that she is still very active, can drive a car and is mentally sharp. Still, she is always hopeful for new therapies that will ease her pain and that of others with MS.

While massage cannot cure MS, researchers say it holds promise to manage symptoms.

“People are always looking for new ways to manage MS,” says Christina Manella, PT, LMT, former therapy manager in Shepherd Center’s MS Institute.

The beauty of massage is that it offers physical benefits, as well as mental and emotional upsides, too, Manella says.

“MS can be very stressful for patients because they don’t always know what’s coming next,” she adds. “This type of study helps us look at the whole person because a patient might be on the right medication and be physically fine based on [functional brain] MRIs, but if they are stressed out, it’s going to affect their health.”

Through this study, researchers will be able to quantify any benefits of massage, show that it does no harm in this population, and advance ongoing efforts to improve the health and wellness of people with MS.

To date, there has been relatively little research done to evaluate the use of massage or other bodywork therapies in MS. Yet, surveys find as many as one-third of individuals with MS use massage therapy as an adjunct to their medical treatment, so more data is needed.

“The idea for the study came out of a need perceived in the MS Institute at Shepherd Center and is another example of how we can ask meaningful research questions that will directly impact patient care,” Dr. Backus explains.

Not surprisingly, there’s been no shortage of interest, she adds.

“We didn’t need to promote this study too heavily,” Dr. Backus says. “The good news is that if massage shows great benefits, it’s something that may be more accessible to people with MS and, assuming it is done safely, can be continued over the course of their life.”

To date, many health insurance plans will not cover massage for MS or other chronic diseases, but studies like this one may pave the way for changes in the future.

The one-year study is funded by the Massage Therapy Foundation. For more information, contact Anna Berry at anna_berry@shepherd.org or call 404-352-2020.

Participants must:

• Be diagnosed with MS by a physician
• Be at least 18 years of age
• Not have any fractures, other neurological disease or any health condition that would make massage unsafe
• Be able to lay comfortably on their stomach or back
• Be less than 350 pounds 

Written By Amanda Crowe, MA, MPH

“It’s the invisible disease thing that throws people off,” she says. “I look normal, but you can’t see the pain, the muscle spasms, the fatigue. Examining how you relate to your own body battling something like this is a tough subject to encounter.”

Yosafa was diagnosed with multiple sclerosis (MS) in 2003 when she was living in Indiana – just a year after getting married. She experienced years of difficulties finding the right treatments and care. “I felt like I was lingering in a constant state of relapses,” she recalls. Still, Yosafa persevered with her art education. She finished a bachelor of arts degree in sculpture, studied printmaking and book arts abroad in Italy, and eventually earned a master of fine arts degree in visual arts from Washington University in St. Louis.

By the time she moved to Atlanta, though, she was determined to get her MS under control. “When I first found Shepherd Center,” she says, “I couldn’t stop asking, ‘How could I have not found you sooner?’” 

In addition to finding the right treatment, Yosafa underwent cognitive testing, did physical therapy, went to the Shepherd Pain Institute and took mindfulness meditation classes. “All of it as a package, rather than only seeing a neurologist, made a world of difference,” she says, “not just physically, but attitude-wise and with being able to emotionally handle having MS.”

Beyond art, Yosafa has found new emotional avenues to explore, such as becoming a dog trainer, specializing in helping dogs with fear issues. She’s translated that passion into volunteer and part-time work with PAWS Atlanta and Canine Ph.D. Dog Training.

“Life is about constantly reassessing and readjusting,” Yosafa says. “It took a while, but I’ve found a space for myself and my mind where I’m giving and getting the things I really need. I’m very content with my life now.” 

For more information on MS treatment at Shepherd Center, click here.

Written by Phillip Jordan

Soon, exercise may become a new avenue of therapy for people with multiple sclerosis (MS). A recent Shepherd Center study shows that people with MS who use a wheelchair can safely train on a Functional Electrical Stimulation (FES) bike. For the study, 15 people with MS exercised for 30 minutes, three times a week at the Eula C. and Andrew C. Carlos Multiple Sclerosis Rehabilitation and Wellness Program at Shepherd Center.

Throughout the study, participants increased the amount of time they were able to cycle, and some were able to increase their resistance, as well. After four weeks, they reported a decrease in pain.

“The participants were very positive about FES cycling and were pleased to have an opportunity to exercise,” said Deborah Backus, PT, Ph.D., director of multiple sclerosis research at Shepherd Center. “Not only did they experience less fatigue over time, but some said they actually felt they could think more clearly after they exercised on the bike.”

Increased stamina and mobility also benefits caregivers, Dr. Backus said. “Several caregivers reported it was easier to work with the person they were caring for with MS, and they seemed to have more energy,” she noted.

Shepherd Center plans to expand the study, looking at different exercise protocols and measuring the outcomes.

Meanwhile, Shepherd researchers have already found some potential physiologic improvements related to the exercise. A study conducted in collaboration with the University of Georgia found that people with MS who exercised for four weeks with the FES bike showed improved muscle metabolism.

“Our preliminary data indicates we may be able to alter metabolism in the muscles of some people with MS, which would bring long-term benefits of better stamina and overall health,” Dr. Backus said.

As Shepherd Center continues to explore the benefits of exercise for people with MS, it won’t be difficult to recruit additional patients for exercise sessions. “We get phone calls from people who want to be in our study,” she noted.

For information on how to participate in Shepherd Center research, click here.

By Michele Cohen Marill

Q:  What first drew your interest to the medical field?
A:  I’d always wanted to be a doctor since I was a little girl, and I never really wavered from that. Looking back, I think in large part that had to do with my father getting sick. When I was six, he had a stroke. So I’m sure that’s what led me toward neurology. But nobody in my family had ever been a doctor, so it seemed out of left field to them.

Q:  What have been some of the biggest differences in your ability to treat MS patients through the years?
A:  When I first started, there weren’t any actual treatments. We were just treating symptoms. We didn’t have what we call disease-modifying treatments – ways to actually change the course of the disease or even the outcomes of the disease. That first treatment was approved in 1993, and then four more in the next 10 years. Now we have three oral treatments – IV therapies – and that doesn’t even include all the possibilities coming down the pipeline in research.

Q:  What is the most common misconception you hear about MS?
A:  Probably the most common is that people think everyone with MS is going to end up disabled in a wheelchair. That’s a big misconception, especially today. With the ability to diagnose early and start treatment early, it’s not the case. Just four years ago, that still might have been the norm. But now we have more disease-modifying treatments than ever.

Q:  What motivates you the most in your work?
A:  I take great pride in the MS Institute. We do a very good job of offering specialized care and we take on challenging cases. We can truly alter lives, improve lives. That’s very exciting. And we get a lot of young patients here who have their whole lives ahead of them. It gives me a big charge to realize what we’re capable of doing.

Q:  Why is research such an important part of your job?
A:  We have a good combination of clinical research and patient-oriented focus. I couldn’t imagine doing just research alone, or research without a direct application. I’m much more of a hands-on person, so I love the patient interaction. Our patients are the reason why we’re doing this research. It’s relevant to what we do day-to-day. So I can’t imagine doing one without the other.

Q:  What attracted you to work at Shepherd Center?
A: I was in Augusta, Ga., before, and Shepherd Center was obviously well known there. I knew how comprehensive the setup was at the MS Institute and the team approach they take. It’s a special place. Once I got here, I started telling people it’s like a very smooth-running ship. I certainly couldn’t do my job here without the talented team around me.

Q:  If you hadn’t become a neurologist, what do you think you’d be doing today?
A:  That’s hard to say because I can’t imagine doing anything else. But I was a chemistry major in college, so maybe I would have gone to grad school in chemistry. Who knows where it would have gone from there, though!

Written by Phillip Jordan
Photography by Gary Meek

People with MS urgently need new treatments to halt the condition, and hope is on the horizon. Shepherd Center is one of 30 sites in the United States and Canada participating in a clinical trial to study whether an investigational therapy using a patient’s own immune cells can help stabilize or stop the progression of secondary progressive multiple sclerosis (SPMS). People with SPMS have moved beyond the initial period of relapsing-remitting MS, and their condition has begun to worsen more steadily.

“This is a group of individuals with MS who have not had many treatment options available, so there is a lot of excitement about this study,” says Carlyn Kappy, RD, LD, CCRP the study coordinator at Shepherd.

Eligible study participants are being randomized to receive either placebo or the investigational T-cell immunotherapy called Tcelna™, which is manufactured by Opexa Therapeutics, Inc. Encouraging results from earlier Tcelna trials in MS patients, including some with SPMS, prompted the U.S. Food and Drug Administration to grant it fast-track designation for SPMS.

To develop the therapy, Opexa isolates the “bad” T-cells (myelin reactive T-cells) from a patient’s blood sample and expands them to generate enough reactive T-cells to treat a patient for one year (five doses). The myelin reactive T-cells are thought to cause the inflammation that is the hallmark sign of MS. During the final dose preparation, the myelin reactive T-cells are modified to make the cells unable to replicate. The modified reactive T- cells are then reintroduced to the patient via an injection, which should stimulate the body’s immune system to reduce the number reactive T-cells.

“We are essentially vaccinating them against their own MS,” explains Ben Thrower, M.D., medical director of the Andrew C. Carlos Multiple Sclerosis Institute at Shepherd Center. “The hope is that the body will recognize these cells and trigger an immune response.”

If this new therapy works, it would give patients a customized therapy from the start.
“The immunology of MS is so different from one person to the next, so it’s a little bit of trial and error to find the right fit,” Dr. Thrower says. “This new approach would allow us to treat an individual based on their unique disease.”

Tcelna is also thought to have a lower risk of side effects because, unlike many other therapies used to treat this type of MS, it does not suppress the immune system. In the early 1990s, doctors believed the best way to manage the overactive immune response typically seen in MS was to crush it with chemotherapy and later with immune modulators, including beta interferons, but there were a lot of side effects.

“Existing medications allow us to treat symptoms of MS, but they may also put the patient at risk for other health problems and conditions,” Dr. Thrower explains. “Newer medications have taken us a step in the right direction, but we still find many patients on immune modulators don’t respond very well.”

So far, six Shepherd Center patients have been screened to take part. Participants must be able to walk to some extent on their own with or without an assistive device be between ages 18 and 60 and will need to stop taking any other treatments to slow disease progression if they decide to pursue the trial. Patients are given just five shots of the treatment or placebo a year. Researchers will evaluate the percentage of brain change at 24 months, disease progression, and changes in disability and annual relapse rates.

Although Linda, a Shepherd Center patient, is not participating in the study, she is hopeful this approach will be effective. “Folks with long-term MS have been waiting a very long time for an effective medication for MS,” she says. “We’re running out of options.”

Dr. Thrower notes a lot of excitement about this study. “People with secondary progressive MS often feel left out [of clinical trials],” he says. “With this study, we are closer than ever to a tailored therapy.”

The National Multiple Sclerosis Society reports more than 2 million people have MS worldwide; of these, an estimated 25 to 35 percent may have SPMS.

An initial analysis of the study results is expected in 2016. For information, contact
Carlyn Kappy, RD, LD, CCRP, at 404-367-2620 or carlyn_kappy@shepherd.org

Written by Amanda Crowe, MA, MPH
Photography by Gary Meek