One important thing to manage MS
People with MS share what helps them manage their disease and live fully.
by Vicky Uhland
Just as no experience with multiple sclerosis is the same, there’s no single solution for coping with the disease. Whether it’s been three months or three decades since your diagnosis, it’s important to find what works for you physically, mentally and emotionally. Here’s what a variety of people say is the most important thing they do to manage their MS so they can live their best life.
Bethany Hill-Anderson, PhD
Diagnosed in 2012
Bethany Hill-Anderson was a busy tenured associate professor at a small university when she was diagnosed with MS. Adapting to the fatigue and chronic nerve and muscle pain that came with her disease was challenging, but she credits what she calls “comprehensive mindfulness” — a combination of yoga and meditation — for supporting her mind, body and spirit.
“Comprehensive mindfulness keeps me focused on today, which enables me to let go of the grief I have felt about not being able to do all the things I used to,” she says. “It also prevents me from projecting into the future and thinking about the complications and limitations that may develop. It keeps me more calm, centered and grounded.”
Hill-Anderson began with a few private lessons. She eventually completed yoga teacher training, and today does 15 minutes to an hour of gentle yoga every day.
Hill-Anderson says yoga has helped her balance immensely. “I can even do tree pose. The mindfulness helps me stay calm enough to stay balanced, and that gives me confidence. With this disease, I’ve lost so much physically. Yoga makes me proud of what I can do and shows me my body really does work. It gives me peace, compassion and self-love.”
Hill-Anderson complements her yoga practice with the Mindfulness-Based Stress Reduction program, developed by University of Massachusetts Professor of Medicine Emeritus Jon Kabat-Zinn, for 10 to 30 minutes each morning.
“When I am having a down day — unable to do much besides lie on the sofa because of the fatigue and pain — I listen to guided meditations and I feel more peaceful inside,” she says. “And the breathing aspect of these practices has led me to be calm through stressful times, including enough during my annual MRI so that I no longer take a sedative.”
Roswell, New Mexico
Diagnosed in 1999
Along with MS, Cindy Harrison also has Ménière’s disease, which is caused by fluid buildup in the inner ear and leads to dizziness and hearing loss. About a decade after her MS diagnosis, Harrison traveled to the Mayo Clinic for a consultation.
Harrison’s husband, who had been abusive throughout their 37-year marriage, was not supportive of her trip. After he was verbally abusive during her consultation with one of the Mayo Clinic doctors, the doctor told Harrison her main problem with managing her MS was stress.
Harrison knew the biggest stress factor in her life was her husband. The doctor’s recommendation helped give her the impetus to get a divorce, but it wasn’t an easy choice.
“I was raised in a very strict Baptist home, and I was told I would go to hell if I got divorced,” she says. “But I decided I’d rather go to hell than put up with s*** like that.”
After her divorce a decade ago, Harrison met a man “who treats me like gold and loves me like there’s no tomorrow. I married him and I’ve never looked back.”
Now, she plays golf, travels and does other things she never thought possible when she was first diagnosed with MS. She quit using a cane after her divorce, and her numbness, tingling and balance issues have improved. Her son told her she’s blossomed and seems like an entirely different person.
“My aunt had MS and after she was diagnosed, she laid down and didn’t get back up. I told my daddy I didn’t want that to happen to me. And now I have something to get up for,” Harrison says. “If you have stress, get rid of it! It made all the difference for me.”
Diagnosed in 2013
Brittany Rae had been working as a gymnastics coach for seven years when she began having a whole host of MS symptoms.
“Doing gymnastics and having MS is not the easiest thing,” she says. “The more I tried to continue coaching, the sicker I got. I kept having flare-up after flare-up until I realized I couldn’t coach or do gymnastics any longer.”
Rae quit coaching four years after she was diagnosed with MS. “For someone physically active my whole life, it was a big change for me,” she says. But therapy and MS support groups helped her adjust to this new normal.
“It took years to change unhealthy ways of thinking and not place my worth and my value on productivity. I want to live the best quality of life I can with MS, but if I run myself ragged trying to pretend I’m still able-bodied, I will have a decreased quality of life,” she says. “Life is precious, and I want to enjoy it to my fullest — not society’s or anyone else’s definition of living life to the fullest.”
Rae still stays physically active, swimming and doing adaptive yoga three days a week if she’s able. But exercise is no longer her focus. Instead, she’s decided to search for joy in other aspects of her life. She plays the piano to help with dexterity. She sings because it doesn’t slow her speech like when she’s talking.
“I’ve also come to appreciate the quality time I get to spend with friends and family that I would normally take for granted,” she says. “I know there are days I can’t do that, so when I feel well enough to do it, I try to embrace every moment.”
Chapel Hill, North Carolina
Diagnosed in 2018
For Diana Pineda, finding an effective medication is the single best thing she’s done to live her best life.
She tried two MS medications before settling on Rituxan. She believes the drug, combined with regular exercise and a total overhaul of her diet, keeps her healthy enough that she was recently able to walk an average of five miles a day on a Paris vacation — and even climb 300 steps to the Sacré-Coeur monument.
Pineda follows the Swank diet, which encourages fruit and vegetable consumption and limits saturated fat and processed foods. She also works with physical therapists to develop exercises that accommodate her fatigue, limb weakness and heat intolerance.
“At age 54, I’m probably in better health overall with these changes,” she says, even after having total hip replacement surgery in 2022. “For years, we thought my gait issues were caused by MS, but it turned out to be a combination of osteoarthritis, bad gait from MS and genetics. I share that because I’ve learned to look at all possible causes of ailment these days!
Diagnosed in 1992
When Scott Davidson was diagnosed with MS in 1992 at age 25, there were no medications for MS other than steroids. His doctor told him in 10 or so years, he would likely be using a cane, walker or wheelchair.
But Davidson thought he could beat the odds. He decided to act as though he might be an exception to his doctor’s dire predictions. He didn’t change his lifestyle much to accommodate his disease, but he did make a bucket list and did as many things on it as he could.
“I was a prison guard, my son’s Little League baseball coach, played rhythm guitar in a few different bands and I was a biker,” he says. “My life was good times, good rides, good kid and being blessed — although I’m not overly religious — with my wife.”
In 1997, Davidson had his first relapse, which affected his ability to walk. It wasn’t until 2015 that Davidson was diagnosed with secondary progressive MS.
Two years later, he was using a walker or cane full time and a wheelchair for longer distances. He had been prescribed various disease-modifying therapies over the years but asked his doctor if he could go back to Avonex, which had worked for him in the past. Now, he uses a walker most of the time and a wheelchair only occasionally.
Davidson thinks he’s had a good run with his MS. “I beat the predictions, and I’m OK with that.” Choosing to live his best life — and continuing to do so more than three decades after his diagnosis — may very well have been the most important MS management decision he’s made.
Thomasville, North Carolina
Diagnosed in 2013
Patricia West’s No. 1 coping mechanism for her MS is simple: getting up each morning. “Just knowing I can still get out of bed, take a shower, drive my car and go to the grocery store makes me think MS is not controlling my everyday life,” she says.
West’s mother died when West was 16, so she didn’t get to watch her grandchildren grow up. West is determined to see her grandkids graduate from college. Despite coping with severe daily symptoms, she’s learned to take things slow in order to live the best life she can.
“I can’t be the grandmother that my own grandmother was, but I can do other types of things with my grandchildren, and that’s important to me,” she says.
Diagnosed in 2012
When Melissa Ater was diagnosed with MS, she was in her last semester of nursing school and dealing with an impending divorce. “The stress really messed me up,” she says.
As her disease progressed, Ater realized she would need to learn to set boundaries — not only for herself but also for others in her life.
“I was a single mom, trying to make everyone happy while I was suffering from fatigue and pain. Having an invisible disease is horrible and debilitating when you try to do too much. I was always doing, doing, and not taking time to look at my body,” she says. “I realized I don’t have to feel bad for saying no. At the end of the day, it’s me; I’m going to feel the effects.”
With her church group, Ater read a book about setting boundaries. She was determined to apply its lessons to her daily life. When she moved from New York to Florida in 2020, she finally got the opportunity.
“It was a new environment, a new change in my life,” she says. “That helped me make the decision: I’m going to set boundaries with everyone,” she says.
But while the decision was easy, the implementation was more difficult. “People didn’t like it,” Ater says.
But Ater believes her boundary-setting has helped her better manage her MS. She works from home as a nursing care manager, which helps her feel more productive and gives her time to go to the gym. Pacing her non-work activities also means she has less fatigue and pain.
“I’ve learned to listen to my body and know when I’m at the point that if I do something else and it will be over the top, I don’t do it,” she says. “I just say no.”
Diagnosed in 2017
“When I was diagnosed, I was told, ‘You have a progressive, degenerative, incurable disease.’ It was a huge burden to carry around with me,” Vickie Hadge says. “Once I let that go and figured out there were things that I could do to live well with it, I had a shift in perspective. Committing to taking exquisite care of myself has really helped me reduce my symptoms, possibly reduce my chances at relapses and helped my mental health as well.”
Shortly after her diagnosis, Hadge overhauled her diet to help manage symptoms like fatigue, brain fog, spasms and balance issues. She had been a vegetarian, but admits there were times she was more of a “junk-food vegetarian.” (“Did you know Oreos are vegan?” she jokes.) Now her diet emphasizes whole, plant-based foods.
Three years ago, Hadge began trying to improve the quality and quantity of her sleep, but admits it’s still a work in progress. And right after her diagnosis, she started taking dietary supplements under the direction of her neurologist and naturopathic doctors.
Hadge also makes sure to exercise regularly. Six years ago, she started both meditation and yoga.
“I start and end each day with 10 mindful breaths and typically do a guided meditation each morning as well,” she says. “Showing compassion towards myself and others and living mindfully has helped reduce my stress levels.”