LEADING WITH RESILIENCE w/Carol Hunley

For Carol Hunley, MS is more than a diagnosis—it’s a call to action. Living with Secondary Progressive Multiple Sclerosis, she has turned her own challenges into fuel for advocacy, serving as Chair of the Carolinas chapter of the National MS Society. With relentless determination and a heart for the MS community, Carol is working to ensure that those living with MS don’t just survive, but thrive, while pushing for a future free from the disease.

ALLIÉ: Your journey with MS is uniquely your own. Can you take us back to the beginning—when did you first notice something wasn’t quite right, and what was it like to hear the words ‘You have MS’?

CAROL: If I go back, it was really 2001 when I ended up in the emergency room with numbness from my head to toe on my right side. I mean, like totally numb, and my right leg was very weak. You know, I went through the ER and afterwards went through a battery of tests to rule things out. I was told I probably had MS.

I went through MRIs, which, of course, was frightening, right? I mean, I was a young mother—well, young-ish—working my way up the corporate ladder. I didn’t have time for any sort of sickness, let alone MS, right?

I had a battery of MRIs and saw a neurologist who said, “No, it’s not MS,” because I only had lesions on my spine. And in order to have an MS diagnosis, you need lesions on your brain. And I had no lesions in my brain. Right?

Okay, so I went on with my life—raising my kids, climbing the corporate ladder. The numbness in my leg continued. It went away elsewhere in my body, but the leg tingling continued, and I just dealt with it. You know, I’d just hit my leg every once in a while to wake it up and move on.

Then we moved to Boston, and it was probably 2014 when I started to notice different symptoms. They weren’t horrible, but in 2014, colleagues and I were traveling internationally, and we had a very tight connection at Heathrow Airport. We had to rush to get from one connection to the other—and I couldn’t run. I physically could not run.

So these two gentlemen took my bags, held my hands, and tried to get me to run. I could not do it. So we walked as fast as I could. I thought, That is frightening.

When I came back, I went to my doctor and said, “I really want to pursue this. I think I have MS.” I had been on the MS Society website on and off, comparing my symptoms to what I read there, and I was ticking them off. I was pretty convinced I had MS. I had a gait change, I had balance issues—I was kind of climbing walls or walking along them—difficulty going up steps, bladder challenges...

I finally went to an MS specialist neurologist in Boston, and in 2015, I was diagnosed with relapsing-remitting MS. Frightening, yes—but also a relief to finally know what it was. And, frankly, to be able to tell my kids, No, your mother isn’t just uncoordinated—there’s a reason for this.

You have to have humor along the way, too.

At the time, I didn’t know anyone with MS, but I remember picking up a Momentum magazine in the neurologist’s waiting room. There was an article about Ann Romney—it was right after the presidential election where Mitt Romney had run, and Ann Romney has MS.

I thought, Wow. If Ann Romney can hit the campaign trail with her husband—a grueling campaign trail—I can be a banker. I can go to a bank every day and do my job.

That kind of served as the beginning of realizing it’s helpful to have someone to look to who’s living a normal life with MS, right? Living your best life and dealing with it. So that was very helpful.

ALLIÉ: Living with Secondary Progressive MS presents its own set of challenges. What has been the hardest part of your journey, and how have you found the strength to keep moving forward?

CAROL: I'm actually just coming out of the hardest part of secondary progressive MS. It's a common phase of MS, right? It just means that you're not increasing your lesions, but the lesions you have are causing more damage. So, it's progression without additional lesions.

I retired last year—I'm recently retired—and I thought, Okay, I’m going to do all kinds of traveling and live my best life. And all of a sudden, I started noticing I was slowing down. I mean, the progression was clear. I had several falls—one of which caused two fractured ribs, which I never want to go through again. So, it’s important to be safe.

I’ve been on a cane for about five years, but that was the point where I thought, I’m beyond a cane. When I’m out and about, I need more than a cane. So, I bought a rollator—which you’ve seen me on—just to be safe. But that was kind of hard to adjust to, right? I did my fair share of wallowing, and then I thought, This is ridiculous. I mean, how can I feel sorry for myself? I live a very nice life. I have a very supportive family who loves me, and I love them.

So, I joined the YMCA. I got myself a trainer—who I have a love-hate relationship with. I’m there three, four, sometimes five days a week. I’ve probably exercised more in the past four months than I have in my entire life. I’m going to the pool. I’m weightlifting. I’m just trying to keep my legs moving as long as I can. And I see progress.

I went to physical therapy, and at my last session, she said, “You’ve gained 10 degrees in your ankle movement. You’ve done a great job of exercising, doing what I’m telling you, and you’re getting stronger.” And I see myself getting stronger.

You know, I keep arguing with my trainer. He says, “We’re going to get you off the cane.” And I say, “I don’t want to get off the cane. I just want to be safe on the cane.” You want to be strong and safe—to avoid the falls and avoid further damage.

So, I’m doing great. I’m on a cane most of the time. I travel with the rollator. And I see my endurance improving. My goal is to be able to walk my dog again—and he can’t wait. But yeah, I’m doing great.

ALLIÉ: You serve as the Chair of the Carolinas chapter of the National MS Society with such dedication. What was the turning point that made you shift from facing your own diagnosis to becoming an advocate for the entire MS community?

CAROL: I would say my first real connection with the Society was through a walk. My husband and I had moved to Charlotte—I was diagnosed in Boston—and I realized, you know, one year we had seven feet of snow in Boston, and snow is not a friend to someone with balance issues. So, we relocated to Charlotte, and I joined a walk through my employer at the time—an MS Walk. I thought, what the heck?

That was in 2017, and there was a young man who was the captain of that walk team. So I called him and said, “Hey, anything I can do to help, I’d love to.” I asked, “What’s your connection with MS?” He said, “Well, I haven’t really told anybody, but I was recently diagnosed.” I said, “Oh, I’m so sorry.” And he said, “But I don’t know anybody with MS.” I said, “Well, now you do. So let’s, you know, be friends.”

And it was through that connection—we’ve gone to the walks every year since. We go to the annual Gatsby Gala fundraiser for MS every year. This young man and I have become very good friends. He’s part of our family now. And he has an incredible story. But I saw how helpful it was for him to talk to somebody who understood his journey—who had been where he was now going.

Through that initial walk, I got more involved with the Society and was honored to join the board in 2019. My eyes were opened to the totality of the community and what the Society has done. I mean, go on the website and see some of the research that’s being done—it gives me goosebumps. You know, repairing myelin, identifying markers for MS—not only so you can diagnose it sooner, but so you could potentially, down the road, prevent it. Right? If you know that there are markers that could be an indication of MS…

The research that found the Epstein-Barr virus could be a marker for MS—realizing, Wow, I had mono as a kid. Both of my daughters had mono. So I’m constantly trying to raise awareness with them. “Look for these symptoms. Be aware of your body,”—more so than I was.

Anyway, I’ve really enjoyed getting to know the Society and others who are connected to it. It’s just a fabulous organization. They’ve funded over a billion dollars in research. They lead a global effort called Pathways to Cures that has aligned medical communities around the world toward finding a cure—and preventing MS.

But again, it’s not just the research—it’s the resources. It’s the MS Navigator. It’s the advocacy they help coordinate. Especially now, more than ever, advocacy is so important. We’re seeing funding for research being cut. We’re seeing potential healthcare dollars being reduced at a time when people are more vulnerable than ever.

ALLIÉ: So often, the MS journey can feel isolating, but you’ve built a strong sense of connection and support within your community. What does ‘living your best life’ with MS look like to you, and how do you help others find that for themselves?

CAROL: I’ve titled my walk team "Living Our Best Life With Your Support." It’s tough to fit that on a t-shirt, but it just means so much to me—because that’s kind of the description of what I think of when it comes to the walk.

For me, it’s about trying to find—and first of all, accepting. I mean, not letting MS define me, but accepting that I live with MS. There are things I’m not going to be able to do. I need to accept that, and I need to find the best way forward.

So, I’ve availed myself. I mean, I research and find things—and my family finds things—that make life easier. I have a stool in the kitchen that I use so I don’t have to stand and get fatigued, so I’ll sit to cook. I have the canes. I now have the rollator. For a while, I wore a WalkAide—I researched that—which is a stimulator that helps with drop foot. I have a pair of Cadence shoes, which is cool. I mean, really cool technology. I just think it’s awesome that they developed that. It helps with drop foot, because so many of my falls were caused by that. I mean, I trip because my foot doesn’t pick up.

So, I think it’s really cool that there’s new technology and shoes. But I also recognize that not everybody has access to these things—and that makes me sad. And that’s why I think we need awareness and funding.

I’ve embraced the fact that I need to accept help. For the longest time, I didn’t want to. I was like, No, no, I can do everything myself. And now I’ve had to realize—I can’t do everything myself. And I let people help me. I accept that there are going to be things I can either purchase or somehow acquire that can make my life a little easier.

But I live a normal life. I mean, I live in a two-story home and never go upstairs, so it’s a little frightening to think about what might be up there—it’s all my husband’s! But I’m able to live on the main floor, which is amazing. I’m very fortunate to be able to do that.

Yeah—I am living my best life.

ALLIÉ: The fight for a cure is ongoing, and you’re on the front lines of that fight. If you could share one message with researchers, policymakers, or even those newly diagnosed, what would it be?

CAROL: The messages would be different for each of those categories.

For the researchers, I would say the message is: You are my heroes. They are the ones at the forefront, really moving us forward toward our goal of MS not being with us, right? We are so close to finding a cure, and it is thanks to them. So—hold fast, stay the course, and thank you.

For the newly diagnosed, I would say: Now is a good time to be diagnosed with MS. The toolkit has never been larger for managing this disease, and a cure is close. I really do believe that those who are newly diagnosed will see a cure in our lifetime. They have therapies today that weren’t available back when I was in the ER. There are so many options now that are incredibly effective at managing the disease. So—do not be disheartened.

To the policymakers, I would say: Please, please, please carefully and thoughtfully consider any changes you make to funding for medical research—not just MS. There are so many chronic illnesses where research is at a pivotal place. We aren’t the only ones hoping for a cure. And it pains me to see funding cut. I understand that funding needs to come with accountability, but I just hope there’s very thoughtful consideration behind any changes that are made.

ALLIÉ: One last question for you, Carol. When I ran the 8K last year at the Philadelphia Marathon Weekend, I wore a shirt that said “I can't run from MS, but I can run with it.” I'd like to swap out in that second sentence – the run bit… because whether we can or cannot run, there's always something that we can do to deal with it, to live with it.  So, “I can't run from MS, but I can ____ with it.” How would you fill in that blank, Carol? 

CAROL: Thrive. Thrive with it… to live my best life. ∎

Learn more about the National MS Society: www.nationalmssociety.org