Multiple Sclerosis Made Me Stronger
For these MS warriors, strength is found in some of the most unlikely of places.by Lambeth Hochwald Health Writer
If you’re among the one million Americans living with multiple sclerosis, you know it's a lot, physically and emotionally. But for many people with MS, the condition also becomes a new source of strength. Take these eight MS warriors for example; whether it’s training for a long—very long—race or simply saying yes to getting emotional help, they’ve each found ways to get through the good and bad days in ways that may surprise you but will inspire you, too.
“I’m using my songs to connect with—and empower—others.”
Brittany Quiroz, 31, Mission Viejo, CA
“When presented with a challenging situation, so many of us have the tendency to stay in a dark place. But MS isn’t a life sentence. It’s all about perception. I’m a singer-songwriter and, for the first time, I feel like I have a purpose connected to the subject matter of my music. I want people to know that they will go through hard times but that they will be okay.”
While Quiroz’s (@ahotms) neurologist says she had probably been living with MS for 10 years, she wasn’t officially diagnosed until 2019.
“I’ve used songwriting as a coping mechanism, too. I always make it a point to focus on being very transparent with my lyrics to connect with how I know others are dealing with disabilities and chronic illness.”
In her song, “Where Were You?” Quiroz writes, “Fight or flight, do or die. Never get it, ‘til it gets you and all you ask is why. Take a day, one at a time. Cuz your story isn’t over and it’s all about the climb."
“Receiving messages from other warriors of how a song I’ve written has changed their perspective is such a rewarding gift. Music is such a powerful healing tool!”
“When I bike a steep mountain pass, I forget all about my MS.”
Larry Danahey, 69, Denver
“I do everything that I can to stay very physically active. I do yoga and stretching exercises, floor exercises, calisthenics, and weight lifting. I mix those up over three to four times a week. But it’s summer I love most. I’m an avid cyclist so summer is devoted to bicycling. I typically bike between 3,000 and 5,000 miles a year. I live in Colorado, and I bike up and down mountains and have surprised myself with some of the rides I’ve accomplished. I usually go with someone I can rely on to do things like refill water bottles, help me get off the bike and get me to a place where I can sit down for a few minutes—whatever I can’t do on my own.
“Sure, I think about my MS all the time. It affects everything and it manifests in an obvious abnormal gait. I walk frequently with a cane and my pain and fatigue can be severe, particularly in the evenings. At times my mental acuity is also significantly impaired, but I will tell you this: When I’m cycling on some steep mountain pass, I don’t think about it. It gives me that break. That lift in my spirits really helps me feel strong.”
“I’ve become an MS advocate!”
Jennifer Digmann, 45, Mt. Pleasant, MI
“I am living strong with MS because I am living! Baby steps are small, but they still move you forward; besides what other choice do I have? I am not going to give up. One of the ways I keep moving ahead is by being an advocate. My husband, Dan, who is living with relapsing-remitting MS, and I started a blog (“A Couple Takes on MS”), and we speak about MS around the United States. We’re also very involved in doing advocacy work with the National Multiple Sclerosis Society.
"We’ve made several trips to Washington, D.C., to meet with our elected officials to talk about issues that impact the MS community, such as affordable medication, NIH funding, surprise billing and rehabilitation technology. We were even inducted into the NMSS Hall of Fame for Advocacy in 2015 and were just named Michigan’s MS Activists of the Year for 2019.
"I live strong because this disease, try as it might, will not get the best of me. Also, I enjoy using my voice to help myself and others living with MS. It does good and makes me feel more powerful. I often joke that I will keep talking about this disease until people cure it—just to shut me up!
“It may sound strange, but MS has brought a lot to my life, including purpose and a knowledge of what’s important like my family, friends and my health. There are so many amazing people and fantastic experiences I never would have had.”
“I go to therapy to talk about my MS.”
Whitney Whitmire, 33, Kansas City, MO
“I feel my feelings when I need to. This may seem so simple, but it's something I’ve learned only since my diagnosis in 2017. I can let out my emotions in a healthy way, which helps me feel better and more positive. That's something that's been very helpful, especially with my transition to a wheelchair.
“Therapy with my psychologist helps me process what I’m feeling just by saying it out loud and receiving confirmation that what I feel is valid. It also helps me realize that after a hospitalization or other setback, that I will eventually find my new normal and be able to cope better."
“I’ve become an endurance athlete!”
Crystal Perry, 38, Bella Vista, AR
“After my diagnosis in 2003, I spent the next 12 years of my life trying to be normal. I was trying to have the energy to play with my kids, work, and vacation without having to think about medicine, infusions and injections, but the reality was that my whole world revolved around MS. Because I was trying to hide the fact that I had MS, I was always angry. One day I woke up and decided to fight back. I did my first workout—a 30-minute home video—and couldn’t finish. I got overheated, which caused temporary paralysis for three days. I thought ‘This is just my lot in life.’
“I regained my strength and once I could stand again, I tried again. Over the course of the next eight months, I worked out a half hour a day even when my pain was so bad. I lost 88 pounds and stopped taking 23 medications. After a year of home workouts, I thought it would be fun to do a 10K or a half marathon. I signed up for 10 races—go big or go home!—including a 5K, 10K, and a sprint triathlon.
“Today I’m competing in events most without chronic disease wouldn’t even try to attempt. In 2019, I completed four half Ironmans and my first full Ironman in November. I can literally workout for 14-plus hours at a time, if you feed me. I play with my kids at the park, I race with my daughter in triathlons. Without having been diagnosed with MS, I wouldn’t be able to encourage other fighters to keep fighting. I also wouldn’t be nearly as hopeful as I am today. Everyone has been dealt with a certain hand of cards. This is mine, and I’m trying to live life to the fullest.”
“I’m a personal trainer who helps others.”
Vickie Siculiano, 47, Wayne, NJ
“A big motivator for me to always be strong is my four-year-old son. He is my muse and my reason for going to the gym every morning. Seeing the results of exercise, such as an increase in stability, strength and balance, keeps me going. One of the most amazing benefits I’ve gained is a noticeable increase in my endurance. I’m now able to move freely through the gym without getting tired moving to another area or machine because I have more energy. My world has opened a lot more, and it translates into real life, too. I have way more endurance than I had before I started exercising.
“Motivating others helps me so much, too. I share my exercise expertise and my daily activity on my Instagram page (@vickiesicnj) and that has helped me meet others with MS. “My goal is to become a Corrective Exercise Specialist, where I will help others with chronic illnesses live healthier, more physically fit lives. I feel lucky to be doing this work!”
“I signed up for ballet classes!”
Debbie DeMarco Bennett, 42, Sacramento, CA
“My multiple sclerosis diagnosis served as a real wakeup call that I should take nothing for granted. In 2014 when I was diagnosed, I had numerous relapses, including one that impaired my ability to walk. Still, I’ve always dreamed of learning to dance, and, despite the challenges I face, last year I finally signed up for a beginner ballet class.
“I'm now taking four classes a week plus a private lesson, and I’m getting ready to perform in two pieces in the spring. I also started an Instagram page (@balletandchocolate42) where I'm documenting my journey so I can inspire and encourage others with chronic conditions. Although my MS symptoms can sometimes be difficult—I sometimes get slammed with fatigue out of nowhere and when the fatigue is hard-hitting I tend to end up needing to spend the whole day in bed because I don’t have the energy to do the most basic of things. On those days, I need to take it slow and rest more than the average person. If I don’t have the energy, I still go to dance class, but I can’t always fully participate. This means I must just sit on the floor, observe, and take notes.
“Fortunately, I have teachers who are willing to accommodate me and allow me to listen to my body and rest as needed. I don’t like to miss class because of symptoms because I don’t want to get behind. It feels like a true accomplishment when I’m able to participate in an entire class session. My goal: To dance for as long as I possibly can.”
“I use humor to stay strong.”
Mary Pettigrew, 54, Dallas
“The more MS throws at me, the more resilient I become about anything and everything in my life that has been challenging. I refuse to curl up into a ball, whining and complaining about things.
“Plus, I find humor to be an integral component to healing. I do my best to find a way to laugh out loud! I have numerous friends who also have MS and we chat regularly on the phone, FaceTime or via online texts. When others feel less alone in their disease, it’s easier to open up, chat and laugh freely without judgment. Whether it’s female issues, bathroom ‘oopsies’ or otherwise, we can laugh about it together. It’s cathartic, therapeutic, and a healthy release. Those who know me, would agree humor is something important to me and part of my personality.
“To stay strong, I also think it’s important to make self-care a priority. Part of my self-care practice is learning to stop being a people pleaser and to say ‘no’ when called for. It’s a work in progress for me, but I find it to be very important. Ultimately, I choose to live in the now, and I’m eager to explore new opportunities–all for the joy and purpose of continuing to move forward—and I will do my best to laugh as much as I can, too!”