Voiceover:
Welcome to The Raw Nerve, the official podcast of MS Australia. A conversation space for all things multiple sclerosis. Join us for news and views on the latest research, treatments and advocacy efforts, as well as candid and informative interviews with our community, those living with MS, and their families and carers, together with leading clinicians, researchers, and advocates.
Jeremy Henderson:
Hello, and welcome to The Raw Nerve. I’m your host, Jeremy Henderson. Now, many people can’t imagine running one marathon, let alone running one on every continent. Today we’re joined by Derek Stefureac, who may be the only person living with multiple sclerosis to have run a marathon on every continent in the world.
Jeremy Henderson:
Derek joins us from Las Vegas in the US. Welcome, Derek. Wonderful to have you here. Tell me a little bit about your passion for running.
Derek Stefureac:
Well, my passion for running is really at its peak right now, and it didn’t start that way and it just slowly grew over the course of years actually. And it started with getting diagnosed with MS. I was 39 years old and I had an attack when I was at work where half of my body seized up, froze up, was all numb, couldn’t move it for maybe about a minute. And in the middle of it, I asked my coworker to call 911 that I thought I was having a stroke.
So, as she was on the phone with 911, all the numbness went back away and I felt back normal again. So, we canceled the ambulance, but I had one of my coworkers drive me to the medical center because I didn’t feel it was ambulance necessary now. And so, that started a lot of doctor appointments and a lot of different tests to try to figure out what happened. And after about maybe four months after that happened, a doctor had recommended I get an MRI. And then, on the MRI they saw the lesions.
Jeremy Henderson:
How frightening was that, Derek, both in the moment but also in that four-month period of uncertainty? Was that the first time you’d met with and encountered a health issue that you had to work your way through? And what was that like?
Derek Stefureac:
Yeah, the initial attack was really scary. In the middle of it, I thought, “I might die. This could be the end.” I didn’t know what was going on. This numbness was consuming half of my body pretty quickly, within a matter of seconds. So, after it went away and I started going to doctors and no other symptoms were happening, I kind of calmed down because there wasn’t anything going on in the immediate and I just very curious to what it was.
And as the months went on and I’d go to a different doctor and they just recommended different tests, it was inconclusive and things like that. Nothing was happening in the interim. So, I gradually was feeling a little bit better and, “Hey, maybe those were just some kind of freaky one-off, I don’t know, anything.” And then I got the diagnosis of MS and that was the second-scariest moment. My stomach sank. And I didn’t even really know what MS was specifically at that time, but in my ignorance to what it was, I just knew it wasn’t good.
Jeremy Henderson:
You didn’t know anyone with MS at that time?
Derek Stefureac:
Exactly. No one in my family and none of my friends, or no one that I had encountered that I knew of had MS. They told me a couple of things though, that one, that it wasn’t a life shortening disease, that it was something that it was between my brain and spinal cord and my nerves, and it could progress into being more debilitating, but it would be a quality of life issue, not a length of life issue. I don’t know how exactly true that is. I believe that to be true, but that made me feel better in the moment, for sure.
They said, “Your best defense against it is a healthy body in just other aspects of your life.” At the time, I was probably 20 pounds heavier than I am now. I wasn’t excessively unhealthy or unhealthy looking, but I wasn’t exercising and I used to smoke cigarettes. I wasn’t a portrait of health, even if just to look at me, it looked like just an average guy maybe. So, that scared me into quitting smoking. And as part of quitting smoking, I started jogging. I really just found that it just made me feel too stupid to jog and then smoke after. So, it was a deterrent in a good way, positive in a couple of angles.
As I started jogging, I noticed that I limped after like a mile. This was an MS symptom that I didn’t even know I had until after I was diagnosed, because I never ran, so I never got to a one-mile marker where my leg would start to limp.
Jeremy Henderson:
I’d really love to hear about this because I think I’ve read your story and we hear this story about someone who’s running so many marathons, and as I said before in the opening, you’ve run on seven of the continents, and it sounds like something nobody could do, but you had to start somewhere and you had to start essentially at the beginning. And talk to me a little bit about that and the limp and overcoming those issues, because it wasn’t as straightforward as just running a marathon on day one, was it? It’s been a long journey.
Derek Stefureac:
Yeah. Yeah. I was diagnosed in 2011. I ran my first full marathon in 2018. And then, I mean, I really kind of got a bit out of control with it after then, but there’s been a lot of them in the last five years, but they’ve all been focused in the last five years. And yeah, what is it now? 12, 13 years since I was diagnosed. So, it was very slow going. I wasn’t a runner. So, running a mile was just a way to … I would feel like it would help with all parts of health, just a general, hey, jogging a couple miles is good for you.
When I started to notice that limp though, there was something that I … I talked to different people about this and I was recently talking to my mom about this, and when I first noticed it, my first thought was, “Well, we’re not going this way. This isn’t going to be the direction. I’m too young and all of that to start becoming crippled or whatever.” So, I thought that if I could just make my legs stronger and if my brain could just fire neurons down there, impulses down there, thousands and thousands of times, that that should work, that that should make it better. So, that was at the beginning of running, no ideas of marathons either. Just didn’t want to be in a wheelchair really. So, it started working though.
Jeremy Henderson:
That sounds like it was obviously a lot of positive attitude to it, but in terms of the overcoming of the limp, for example, so did you embark on some serious strength training or was it just through-
Derek Stefureac:
No.
Jeremy Henderson:
… just running more?
Derek Stefureac:
Running more. I thought running more would do it. I thought because running was the problem, I thought … And maybe I’ve never been a weightlifter. I’ve always been a cardio guy instead of a weights guy. So, maybe just my brain, I didn’t think that direction initially. But I noticed that when I would run more, that the limp would take longer, that it would be a longer period of time and a further distance that I could go. And it was giving me positive reinforcement for that. And then, maybe after a few years of doing that, I thought, “Wow, I should sign up for one of those races with the … You get the bib and your number and all of that.” I did one when I was 11 years old and then skipped running. Running didn’t take to me back … Or, I didn’t take to it back then.
But I did want to go back, one thing real quick, I just remembered. I was saying that I was talking to my mom about that. And in my mind when I started to limp, I thought, “We’re not going this way. We’re moving forward. We’re getting past this.” And I didn’t even think any alternative at all. And when I told my mom that story, she said, “I’m more negative than you. I think I would’ve said, ‘You know what? Running’s not for me. I need to try another form of exercise.'” And I just think that that positive attitude and that mindset really carried me. It has really helped me. We can never know if the medicine I just started is 100% responsible for my success against the disease right now, but I have to believe that the running is a big contributor to keeping me healthy.
Jeremy Henderson:
How important has that been? So, dealing with a disease where there is that degree of uncertainty, how important has it been to you to take some agency in your life in terms of controlling the things you can control? And we’ve spoken about you stopping smoking. Presumably you’ve also focused on diet, and you’ve clearly nailed the exercise part of it. How important has that been in terms of you feeling like you’ve taken back some control?
Derek Stefureac:
I feel grateful for the MS diagnosis that it really scared me into living the way I live now, because just, I’m happy in many areas of life and I’m really living a full life doing healthy, good things. And it feels good to be able to run up a flight of stairs and not be winded, just for a small example of something in life that I can’t imagine that I would’ve started running like this and taken to it if I didn’t have that diagnosis and the disease of MS, it’s in me. Even if I’m not experiencing symptoms now, it’s a very mysterious disease and can creep up out of nowhere.
I use that to motivate me to do these things, to travel the world. Do it now. Don’t do it over the course of 10 years. If you have an opportunity right now, do it right now. You don’t know what tomorrow can bring. But in a positive way. I don’t think negatively and I don’t live in fear every day like, “Oh man, what if tomorrow I wake up and I can’t walk to the bathroom or something like that?” Yeah. So, I keep positive thoughts and keep moving forward. Yeah.
Jeremy Henderson:
So, I wonder if, just in terms of living with MS today, how is it impacting your life today in terms of symptoms, in terms of impacts, just in your everyday life? I wonder if you can speak to that.
Derek Stefureac:
I’m very fortunate that I do not have any major debilitating symptoms. Any symptoms that I may have could often be … A lot of MS symptoms are like short-term memory, but that’s also getting older. There’s different things like that.
So, major symptoms, I have not had any major relapses in a long time. I’m very, very fortunate for that. Any minor ones, I tend to just kind of ignore because it is minor, and just focus on the next thing in front of me. So, I’m on a medicine where I inject three days a week, so I do that all the time. I have a yearly visit with my neurologist. Now we’re down to a every other year MRI, just because my MS has been so quiet for a few years now. So, on a day-to-day basis, MS is not, thank God, a part of my life. It is, but it isn’t in my daily doings.
Jeremy Henderson:
Yeah. And I think I read in terms of the self-injecting, that wasn’t something that you took to or embraced straight away.
Derek Stefureac:
Yeah. That is one of my other afflictions is needle phobia pretty bad, that it’s awful getting blood drawn for me. It’s a stressful week looking forward to that appointment and things like that. I have to lay down and tell them that I’m bad with this. I lay down. Sometimes they put me on a kid’s bed. It’s like a rocket ship or animals.
But yeah, when they told me that the medicine … They said, “Okay. So, get healthy.” Going back to my diagnosis, it was, “You got to quit smoking, Derek. You really need to fix up your health game and you should start treatment right away. It’s a progressive disease and we don’t know how to stop it, but there are ways that we can slow it down. So, we got to do that.”
So, they told me it was injectable medicine, and I swear I was almost thinking, “I’m going to just go without it. I’m just going to tough it out and try to see.’ And I’m not anti-medication, but I was just like, “Yeah, those shots.” Sometimes it would take me an hour to inject because I’d rub the alcohol on my belly, I’d get the needle all ready and I’d hold it to my skin there and I’d just say, “You know what? No, no, no, just give it five more minutes.” I’d go wash my hands or whatever, and just all fidgety. And now I don’t even think about it, but it’s probably hundreds of shots later.
So, that was no fun coming over that. But in the end of it, I knew I had to do it and I knew it was a ridiculous thing to not do medication because you’re afraid of needles. Yeah. I’ve kept all the syringes since I’ve started treatment. And I don’t know how many there are, a thousand. I have like a five gallon jar full. It’s full. I actually just filled it up last week. I got to find a new one. It’s running out of room. A little memento I keep around.
Jeremy Henderson:
So, in terms of your running, how important, you talked about actually taking part in races. How important is that sense of, I guess, being part of a community and taking part in something that you love and surrounded by other people that are going through that similar journey in terms of whether that be marathons or shorter distances? Is that something that you appreciate or you value?
Derek Stefureac:
Yeah. Yeah, definitely. As running helped me through the years, I really began to love it. I almost feel like I was grateful that running has given me these gifts or these things in my life that I totally enjoy doing, get so much out of. And when I started doing some of these traveling adventure marathons, to meet other people that were doing them, no one in my life also was running marathons, none of my family or friends. It’s not a big group of people running marathons. It’s not 50% or whatever. And it just felt really good around them all the time and just you kind of find your people type of thing.
And really, the most rewarding thing of doing all these travels everywhere has been the groups that I’ve gone with because it hasn’t been like a solo thing. You sign up for these trips and you’re with maybe sometimes 10, sometimes 150 other runners there to do that marathon at that cool, exotic location. And so, you really make connections with people from all over the world and make these kinds of friends. And by spending that short, intense amount of time together, doing something really challenging like a marathon, it builds this camaraderie and friendship that is pretty strong. I really love it.
Jeremy Henderson:
So, of the marathons on each of the seven continents, and keeping in mind, this is an Australian podcast, and I know that you’ve recently run the Brisbane Marathon, but what was your favorite marathon experience across those seven continents?
Derek Stefureac:
I think, I have to say my favorite was at Mount Everest Base Camp in Nepal, and it also had to do with the people and the Himalayas, and just the adventure of that trip. It was a 12-day trek up the mountain and then we spent two nights at Everest Base Camp. It’s just where the people who would go to the summit take off from, from that base camp. And then we ran the marathon back down the mountain.
And yeah, it was just really being out in the Himalayan Mountains like that was something I’d never experienced, or even any kind of mountain range that huge like that. And the Nepalese people are so great. Everything about the trip and journey was really special. So, that one really stands out, but they’ve all been great experiences.
Jeremy Henderson:
How many runners were in the race in Everest?
Derek Stefureac:
I think we had 160 total, and 100 international runners and 60 were Nepalese runners.
Jeremy Henderson:
Obviously, issues of dealing with heat is an issue for many people living with MS. Is that a factor for you, possibly not in Everest, but running in hotter climates, is that something that you’ve got to be conscious of or manage?
Derek Stefureac:
You know what? I’m really glad that you brought this up. I live in Las Vegas and in the summertime it gets pretty hot out here, and I don’t stop running in the summer. But heat does exacerbate the symptoms of MS for a lot of people. And at the beginning when I was running, I was under the belief that I should only run if it’s cool outside and stay out of the heat. Like if I was running in the heat, I might be making my MS worse, not just feeling bad but actually making the disease progress faster. And that’s not the way it is.
My doctor back then, thankfully, explained it to me, and I don’t know if this is a common misconception, but that’s why I wanted to bring this up, is that if you experience worse symptoms because of the heat, it’s not making your disease any worse. It’s just your present experience is worse. So, if you can tolerate it, you’re not damaging yourself. And that was something really important to me, because you know what? I try to push myself and I try to get past a little mental pain or physical pain and push through these things. And it’s important to know that you’re not damaging yourself.
Jeremy Henderson:
I wonder if we can bring this back to just advice for people living within MS or, I guess, advice for anyone overcoming adversity? What are the lessons you’ve learned in terms of dealing with your MS diagnosis, and clearly, dealing with it in a very empowering and positive fashion? But there’s many of us out there who for all kinds of reasons, living with MS or not, who couldn’t possibly do a marathon or maybe just wouldn’t want to do a marathon.
But I just, I wonder, in terms of the lessons you’ve learned and if you had to give advice to anyone, but particularly people in the MS community, what would that advice be? A number of years on now from your diagnosis, what have you learned?
Derek Stefureac:
I remember at the time of my diagnosis, around then, as I was learning more about MS, I started going to some of these dinners that would be put on by a pharmaceutical company and a neurologist would speak, and you’d enjoy dinner. It’d be a lot of people with MS and different ways to meet up and network and things like that.
And when I first started going there, it was scary. There were a lot of people coming in there in mechanical wheelchairs, steering with their mouth, this kind of thing. And I do remember looking around, “Is this the future for me?” And it doesn’t have to be. I’m so grateful that I’m not experiencing a lot of symptoms now, or for several years now, and that it seems to be working, everything, treatment, diet, exercise.
Jeremy Henderson:
We know that with a progressive condition, the sooner people can go to a doctor and get diagnosed and get on effective treatment, the better. And to that end, I think awareness and a greater understanding both amongst health professionals and just people in the community, the general public about what MS is, so they know what to look for and to be their best advocate when they go to the doctor and they talk about symptoms they might be experiencing, is just so important. I’m just curious whether you had experienced anything prior to the incident you mentioned at the beginning of the podcast?
Derek Stefureac:
No. That was the real first big incident that I can recall, but it was early diagnosis for sure. Even though I was afraid of needles, it was only maybe a two week when I told them I’d think about starting treatment, that I hesitated. And in fact, the first treatment that I was on wasn’t really good for me. It started affecting my liver in a negative way. I was having flu-like symptoms and things like that each day that I injected, and it was pretty awful. And I ended up switching medications and found one that was very tolerable and is obviously working out very well for me.
So, I would say, yeah, that early diagnosis when something is way off … Mine was such a strong attack that it was easy. Other things like blurred vision or numbness in fingers and toes, I think people can write off a lot in just like, “Hell, whatever. I’m just stressed out or I slept wrong.” Yeah, the early diagnosis, I agree totally with everything you said. I can’t advocate for that enough because I feel that’s been so huge for me.
Jeremy Henderson:
Presumably not so much now, but upon diagnosis and when you were commencing treatment, was it impacting you in such a way that you felt like you needed to divulge that to your employer or in that work environment, or was that not an issue for you?
Derek Stefureac:
You know what? I probably, just in a general way in my life, I probably tell total strangers more information about myself than the average person does anyway. So-
Jeremy Henderson:
So, you’re an over-sharer, then?
Derek Stefureac:
Yeah, I am. I really, I do. Even with strangers, even whatever, at the cashier at a store. But for work, since I had that attack at work, everybody was really concerned. Everybody knew already. So, when we found out what it was, I didn’t have any thoughts of them not finding out, because I had a couple attacks. It wasn’t debilitating for me at the time. I don’t know. I didn’t think about not saying it.
The only times I’ve thought about not saying is sometimes on the marathons they’ll have you … At the beginning of this, the beginning of my marathon running, they say, “You need to fill this health form out from a doctor that says you’re okay to run a marathon.” And I was always afraid they might not let me. So, I didn’t want to give it to a doctor and have them say no.
Jeremy Henderson:
We talked about marathons that you’ve undertaken that have been difficult, but I mean, I guess, just in terms of read a story like yours and it sounds like it doesn’t matter the obstacle, you’re achieving it. And I’m just really curious to know about the ones that haven’t gone so well. Has there been any disasters in that mix in terms of your running accomplishments?
Derek Stefureac:
Not during a race, but one of the races after the marathon, I really wasn’t feeling well. I just went to lay down after, and other people were kind of celebrating and happy and I can hear them laughing, I’m just laying down. And this was one that was out in a mountain top in Chile, so it was far away from town. And then, the bus was getting ready to leave for a three-hour bus ride and I just got on the bus and sat down. I didn’t go to the bathroom, there’s no bathroom on the bus, before we left.
Now, I’ve been feeling not good, so I’ve been drinking all this water to rehydrate, thinking that’s the problem. So, about an hour into this bus ride, I have to pee so badly and it’s the middle of nowhere and the bus driver doesn’t speak English, and I didn’t want to stop. So, I had to use an empty Gatorade bottle and fill it up on … To pee in a bottle in the middle of the bus with a lot of other people, which was another big issue for me. I don’t like doing that thing. But that was maybe one of my more embarrassing stories from the runs.
I’ve felt bad after plenty of marathon, during plenty of marathon. When I first started running, I ran maybe 30 half-marathons before attempting a full marathon. I probably ran for three years before running a half-marathon of just jogging and trying to get stronger and go longer. So, it’s a long progression up to there. The one constant was, I hope this is a good example or a good lesson, is every time I was always challenging myself a little bit more and I could always do a little bit more. I didn’t go from running a mile to running a marathon anywhere crazy. It went from a mile to two miles, and then, months to get to three miles. To a long slow build. But gradually, step by step, now it’s 10, 11, 13 years since my diagnosis, I look back, I’m healthier than I’ve ever been and I feel better than I’ve felt in a long time.
So, little steps. And everybody’s at a different spot. Everybody’s story is different. Everybody’s MS is different. But I think the one constant that I don’t think you’ll find any doctor that would disagree with this, that a good physical body is a best weapon against anything, against any disease, physical, even mental illness, diet and exercise are shown to help tremendously with.
So, for me, I can tell you what, I feel great with the diet and exercise, and I hope that could be a good example or motivate or encourage anybody. It’s not about running marathons. It’s doing a little bit more than you did yesterday, and those days add up slow in the beginning, but over time you look back, you could really progress. Really, look at me, I had no idea I could run a marathon ever. Especially, I started limping after one mile, I wasn’t thinking, “I’m just going to keep going until I run marathons.” It was very just kind of focus on the day, in the moment, tackle what’s in front of you.
Jeremy Henderson:
Excellent. Derek, on that very extremely positive note, thank you very much for your time. Fantastic to speak to you today. Thank you.
Derek Stefureac:
All right. Thank you, Jeremy.
Voiceover:
Thanks for listening to The Raw Nerve, the official podcast of MS Australia. To hear more, subscribe to our podcast today at msaustralia.org.au/podcast.
