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, welcome to The Raw Nerve. I’m your host, Jeremy Henderson. Now, no two people experience MS in the same way, and for some, an MS diagnosis can result in changes to their leisure pursuits and lifestyle. On a previous episode of The Raw Nerve, we spoke to an American man living with MS, Derek Stefureac. Derek took up running after an MS diagnosis for health and wellbeing reasons, and Derek was able to continue and subsequently compete in many global marathons. Today, we’re joined by James Reilly from Ballarat, Victoria. His story is a little different. James’ passionate running routine, his marathons and ultra marathons, were halted by an MS diagnosis in 2015, and now after over a decade, James has returned to running, albeit carefully and slowly. James recently completed a marathon, his first since his diagnosis. In April 2024, James was profiled in his local Ballarat paper, The Courier, and his story has inspired many. 

James, welcome to the Raw Nerve podcast. Now, I think we’re running the risk of looking like a running podcast because this is the second episode where we’ve focused on a member of the MS community who’s a keen runner, so I should assure our listeners that we’re not going down that route. But what we have done and what we have had the privilege of doing in the past is talking to people from the MS community who’ve been generous enough and kind enough to share their MS journeys. And we often talk about ordinary Australians doing extraordinary things and even ordinary Australians just living their best lives and managing their MS, focusing on what they can do rather than what they can’t. We’ve heard many, many inspiring stories, and indeed, yours is another inspiring story, so thanks for joining us today. I wonder if we can maybe go back and start at the beginning, and I wonder if you can tell us about your original passion for running. How did you become a runner? Talk to me about that. 

James Riley: 

I was probably following in my Dad’s footsteps to be honest. We grew up in Warrandyte, Victoria, where there’s lots of good running trails and tracks, so I used to ride behind Dad when he went for a run, so that’s probably where it started. Then it’s something that I enjoyed. It’s something I probably felt that I was good at, a way to clear your mind and just get out of the house, and obviously the physical activity side was hugely important. I was an active kid, played a lot of football, so yeah, it was just something I was passionate about and interested in. I tried to do athletics there for a little while, but I don’t think track was right for me. I needed the open air and the open roads. 

Jeremy Henderson: 

Was running, was it a solitary pursuit or a a social one? Were you somebody who just wanted to get out on the trails by yourself or somebody who liked the company of others when you were running? 

James Riley: 

It was definitely solitary, in part because I’d run ridiculously long distances and not a lot of my friends would keep pace or be bothered to try and attempt what I was doing, and it remains so to this day I guess, now that I’ve picked it back up again thankfully. With three young kids, it’s the best way to get out, clear my mind whilst doing that physical activity, so yeah, certainly solitary, but I did do one 100 kilometer run with three friends, which was an amazing experience. Just to share that bond, share the training, do all that together with your friends, have a laugh along the way, that was fantastic, but it’s probably the only time that I’ve ever ran with other people. 

Jeremy Henderson: 

Talk to me about those long-distance runs. Before your MS diagnosis, what kind of distances were you running regularly? 

James Riley: 

Regularly, 10 to 15 km might just be an average run, I guess. I’d just head out and follow the roads, and wherever they took me, that’s how far I would run usually. I’d done the Sydney Marathon, I’d done the Oxfam hundred kilometer, I’d done multiple marathons in training for that, so I just enjoyed getting out and having a go. I was usually limited by time when I had to be back for something, not by the distance that I was running. 

Jeremy Henderson: 

And you talked about the mental benefits of running. How important was that to you in the past and even now? 

James Riley: 

In the past, and maybe with hindsight, I took it for granted. I just did it because I want to do it and I could do it. I didn’t have the baggage that I carry around with me now and the mental scars, literally and figuratively. But now, it’s hugely important. Now, I guess when it was taken away from me, I’d look enviously at people running and get frustrated by it, and with MS unfortunately comes lots of other things, depression for one. And so for me, just being able to get out and run and clear my mind and try to enjoy something that I used to love, now I’m very conscious of the mental and physical benefits of exercise, and to me, that’s running. 

Jeremy Henderson: 

Let’s talk a little bit then about your initial MS diagnosis and the journey you’ve been on, if you’re happy to share that. Tell me about that diagnosis and how you discovered you had MS. 

James Riley: 

My mum has MS, and she had it for, she’ll correct me, but let’s say 15, 20 years before I was diagnosed. So I had it in my life and probably buried my head in the sand a little bit. I was experiencing symptoms of MS but I didn’t piece it all together, nor did I think to disclose everything holistically to medical specialists when I was talking to them. And so it wasn’t until I was running in the city a couple of times a week on my lunch break at work where I’d start to feel numbness in my toes, and then the next run, numbness in my foot, and the next run, numbness up my calf. So it just progressively started to go up my right leg,that made me seek out help. I think the prospect of losing something that I love forced me to seek answers, and that’s what ultimately led to my MS diagnosis. I don’t like people to think that I stopped running because I had MS. My inability to run led to my MS diagnosis. 

Jeremy Henderson: 

Yeah, I understand. And you talked about ignoring prior symptoms. Do you have an awareness now looking back of other symptoms that you now suspect may well have been early indicators that something was amiss? 

James Riley: 

Yeah, I do, but equally, I can’t assume that everything that I was experiencing was MS. Sometimes it’s hard to try and decouple the two things. Some nerve skin sensation, my fingers losing feeling. Mind you, I was playing in horrendous weather for football so there was every chance it was just frostbite. Visibility, blurred vision when I was exerting myself running, playing football, and bladder. If I’m going out for drinks with my mates and I’m spending half the time in the bathroom, they were the things I was probably experiencing but didn’t piece it all together at the time. 

Jeremy Henderson: 

And you mentioned that your Mum lives with MS. At the time of your diagnosis and having to deal and come to grips with that diagnosis, having that family member there who could provide you with support and information and perhaps some guidance based on her experience, was that helpful or was it harder now that that burden of having that condition was now being dealt by another family member? 

James Riley: 

It was helpful to have someone else that had experienced what you were experiencing, but no two people’s experiences are the same. So I know my Mum carried a heavy burden because I was diagnosed with MS, and I felt a sense of responsibility to make sure that she didn’t feel responsible because I don’t think she is responsible. So yeah, it was helpful, but on the flip side, it also added to the challenge I guess. 

My sister also has MS and she was diagnosed. She’s younger than me by two years. She was diagnosed, my sister will correct me, but 10 years ago or so, and I’d like to think that I could offer her support and talk to her and just be a bit of a trusted advisor and helping her navigate neurologists and specialists and all of that sort of thing. The people at Box Hill Hospital have been great for my family, so yeah. 

Jeremy Henderson: 

So that was actually something I was going to discuss with you a little bit later, but you talk about the support you’ve had where you live. Obviously having that supportive community of friends or family and health professionals is really important for anyone living with MS. Where else have you found that support, and have you grown your support networks since receiving your MS diagnosis? 

James Riley: 

I don’t actively seek support from friends and family relating to my MS. When I first was diagnosed, I was more actively involved in reading literature and trying to do the right things with diet and exercise and whatever it may be, but I’ve stopped doing a lot of that stuff. Unless it’s things that just naturally come to me, I don’t want to force it, because it becomes just this constant reminder that I’m doing it because I have MS. So I’d like to do things a bit more organically. 

I am very open at work about having MS and I do that more just for my own transparency. I don’t want to hide it. I like to wear one James Riley hat. I don’t want a work hat, a personal hat, a leadership hat. I just want a James Riley hat and that’s what I try and do. And I’ve found just by being honest and sharing my story, I’ve had multiple examples of people coming to me and sharing their experiences and thanking me just for being open and honest about it. As ugly as the conversation can be sometimes, it’s just the right thing to do, I think. And I had someone approach me just the other day saying, “I’ve always kept this a secret at work, and it wasn’t until I heard you share your story in a work environment that I thought maybe I should do the same,” and it’s just like you drop a lot of baggage when you do that. 

Jeremy Henderson: 

And you’ve clearly found that your employer and your colleagues have obviously been very supportive and receptive when you shared your story. 

James Riley: 

Yeah, and I know I’m lucky in that regard. I was given advice previously just to keep it to myself. If people don’t understand or don’t know what it means, then they’ll be wary and maybe go for the person that doesn’t have MS just purely because it’s a more known commodity for them, but no, I’m very lucky. 

Jeremy Henderson: 

So if we could turn back to running, so you had a long break after that MS diagnosis before taking up running (again). How hard was that? How difficult was that to give up that passion, that thing that had been such a feature of your life? And what drove you to finally get back into running again, and how difficult was that journey? 

James Riley: 

The absence of running in my life was ever present, to be honest. In Ballarat where I live, it’s quite an active community, so I’d always enviously see people running around Wendouree Lake. And it wasn’t until Ballarat announced their inaugural marathon that it just planted a seed for me that maybe I’ll attempt to do something. And it was probably the kick up the backside that I needed just to, I say stop making excuses, but they weren’t always excuses. Sometimes it’s real. 

So I was walking behind my son while he was riding his bike and I’d, “Let’s just try and run 10 meters.” And so that’s what I attempted to do first time, and I struggled, and physically, mentally, “I can’t do this. There’s no way I’m going to be able to accomplish what I’m even contemplating doing.” And just each bike ride, I would try and add another 10, 20, 50 meters, and so eventually, I think I just managed to change my gait, change my mindset, and just kept at it. And just the prospect of even doing it, even running the way that I was running, which was nowhere near what I had been doing or was capable in the past, was better than not running at all, and my inner doggedness and determination hadn’t left me. So I just kept at it, I just kept chipping away. 

Jeremy Henderson: 

James, I think I read that initially, your plan was to walk the half-marathon, but you talk about that doggedness and that inner competitiveness. You clearly obviously decided that you wanted to exceed that goal, but I think I also read you saying that when you turned your attention to the full marathon, you were very conscious of finishing within the time, that that event had to be completed within a particular timeframe, and you were worried about actually getting the job done. 

James Riley: 

Yeah, that’s right. Originally, I thought, “Well, let’s try and walk the half-marathon and complete that in the six-hour window that it had to be completed by,” but I knew I could do that. I knew I should be able to accomplish that. So then I thought, “Well, how can I run the full marathon? I’m going to have to cut out some time, so let’s just try and get within the six-hour window.” I ended up doing it in five hours and 17 minutes. While I was running, I was trying to get under five hours, so that just shows how far I’d come mentally and physically. So it was hard, it was gruelling, and a lot of MS symptoms came to life while I was on that run and even in my training runs. 

Jeremy Henderson: 

Talk to me about those symptoms and how you overcame those, how you managed those, both in the training and during the marathon itself. 

James Riley: 

Yeah, well, I think just in building your general fitness helped me with managing your heart rate, keeping your body temperature down, so the onset of your drop foot didn’t come as prevalently as what it probably previously did when I was less fit, so that was one. For someone that has challenges with bowel and bladder, there’s nothing more that gets the bowels moving than going for a run I’ve since discovered. And I spoke to my neurologist around that and he said, “Yeah, I have some other people that experience that too and they just have to run with some toilet paper in their back pocket.” But again, I’d rather experience that than not do it at all, not run at all, so you just make do. 

Jeremy Henderson: 

People talk about that runner’s high when they complete an event, but I imagine the runner’s high you experienced after completing that marathon must have been quite amazing. 

James Riley: 

Most definitely, most definitely. I experience that high at the end of most runs, to be honest, because how good’s this? How good is it to have this back in my life? Yeah, it’s incredible. And just to have accomplished a marathon, MS aside, is such an accomplishment, and completing the Sydney Marathon pre-MS, it always sticks with you, but this time in Ballarat was so much more enlightening for me, I think. 

Jeremy Henderson: 

Indeed. So James, you mentioned your own family and you’ve got young children. How have you helped your own children understand your MS? 

James Riley: 

My son, who’s 12, he’s more aware of it than my daughters, who are 10 and six. I think Oliver is very active so he understands that I can’t keep pace with him to the same extent that he’d like me to kicking a soccer ball, so I think that’s how he sees it. Obviously, they know my Mum, their Nanna. They know her impairment, so they see it, they experience it. They get the joy of riding around in her wheelchair, so they understand what it means and what it looks like. 

Jeremy Henderson: 

Now, I understand you’ve recently been on an overseas holiday. Do you try to incorporate running in your travels? Do you find that’s an opportunity to explore new places? And did you get a chance to run? I think you might’ve been in Italy recently. Obviously, it’s been quite warm in Italy in their summer this year. I’m just wondering whether you had a chance to hit the roads when you were away? 

James Riley: 

I did once. Some of the Italians are not particularly fond of public toilets, so that did make it a bit challenging. I went for a beautiful run in Milan, but when it’s 35, 36 degrees, that’s challenging at the best of times. So not as much as I’d intended, but it was nice to get out and go for one good run. 

Jeremy Henderson: 

So what’s next for you, James? I imagine there’ll be another Ballarat marathon next year. Will you be up for that event again or have you got another challenge in mind? 

James Riley: 

I don’t know that I will do the marathon again, certainly not the 2025 marathon. I’d like to just keep fit. I do exercise for enjoyment, not for a particular outcome. I have tried to maybe increase my strength exercises rather than just aerobic exercises. I’m not getting any younger so building muscle is only going to be beneficial. 

Jeremy Henderson: 

James, so maybe just finish on this note. I wonder whether you have any advice for our listeners, maybe people that are at the start of their MS journey or people that may have just recently been diagnosed with MS? What have you learned in your journey? What do you know now or understand better now that you maybe didn’t quite understand or grasp at the time? If you could give one piece of advice, what do you think? 

James Riley: 

It took me 10 years to get running again, and as much as I had physical impairments, my biggest blocker was probably mentally I think. And so it wasn’t until I just gave it a go. It’s something I loved and I had enough motivation within myself to try and make a good go of it. I grew up understanding that swimming is a good sport for people with MS, but I’m not a swimmer. I tried swimming, didn’t enjoy it, so I just stopped. So I think just try and do what brings you joy, and maybe you need to reframe your reality with what you are capable of, but I’d like to think doing that is better than not doing it at all. 

Jeremy Henderson: 

That’s great advice, James. I think that’s fantastic advice because the reality is running a marathon is not for everybody, and it’s not about running a marathon at the end of the day, is it? It’s really about just finding that joy. It’s about being realistic but also not limiting yourself, and not focusing on what you can’t do and focusing on what you can achieve. But as you’ve said, find that thing. Swimming wasn’t for you. Find that thing, the thing that will give you joy. And the importance of having that agency in your life, I guess, and actually being able to take control of something that you can control and something that will contribute to a healthier version of you is just so important. 

James Riley: 

Absolutely. 

Jeremy Henderson: 

James, thank you so much for your time today. Thank you for sharing your story with us. Congratulations again on your efforts at the Ballarat Marathon, and all the best for the future. 

James Riley: 

Thank you. 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.