Episode 8

Leaving our limits behind: Going the distance for MS research

On the eighth episode of the Raw Nerve Podcast, co-host Rohan Greenland laces up his runners ahead of the May 50k and discusses the inspirational lengths that Aussies will go to, to raise vital funding for MS Research.

He’s joined by Samantha Billington from Darwin. Living with MS, Samantha has led an extraordinary May 50K fundraising effort over the last two years. In 2022, with the support of Darwin radio station Hot 100 she and radio personality Brent Watkinson put their May 50K challenge front and centre on a treadmill in a local shopping center.

Rohan chats with MS Plus May 50K Program Manager Lauren Hawkins and finds out just how easy it is to sign up and take part in the May 50K, and speaks with Dr Yvonne Learmonth from Murdoch University about exciting research in the area of physical activity, movement, and exercise, and its critical importance to people.

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Episode Transcript

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. 

Rohan Greenland: 

The May 50k is not far away, we’re all signing up and getting ready. And I’ve got three amazing guests here today to talk more about the May 50k participation in it, and some tips about how to prepare and participate, particularly if you’re living with MS. So I’ve got Lauren Hawkins, who’s the program manager for the May 50k who’s joining us having just had Covid. So it’s very noble of her to join us today. And also the wonderful Samantha Billington from Darwin. Samantha is living with MS, and she has for the past two years done something very, very extraordinary to raise money for research. She has set up treadmills in a shopping center and engaged the local radio station. And particularly in a place like Darwin, not a bad idea to be indoors, participating in the May 50k. 

And also another very special guest, Dr. Yvonne Learmonth from Murdoch University. She’s a very, very special person. She does wonderful work with the MS community. She’s a physiotherapist and has had an MS Australia fellowship, but also helped author the exercise section of our lifestyle guides for people living with MS. So she is really a great expert in this area, and has done some wonderful things and is continuing to doing exciting research in the area of physical activity, movement, and exercise, and its importance to people living with MS. So without further ado, we might start with Lauren as the program manager. Tell us about this year’s May 50k, how can people get involved? 

Lauren Hawkins: 

Well, the May 50k, it’s this wonderful program where everyone can get involved to make themselves a little bit more active, as well as helping us raise money so we can leave MS in the past where it belongs us. So during the month of May, we ask everyone to set a goal. Normally people say 50 kilometers to walk, run or move. So most people will walk or run it, but we understand that not everyone is up for that. So we’ve had people who will use an arm crank, who will swim it, who will even rollerblade. And yeah it’s so easy to get involved. All you need to do is sign up and we go from there. 

Rohan Greenland: 

And it really is the single most important fundraising event for MS research in Australia. And I’ll add, from an MSA perspective, that we are one of the world’s leading MS research funders. The researchers we have, I’ve met one of them this morning here in Melbourne, are world-class and they make a major contribution to advancing treatments, and taking us on the pathways to cures in MS. And we punch well above our weight in the research space so that every dollar that’s raised will go in to support the research program. 

It’s a really important cause and as I say, putting money into Australian research is really helping the whole world, the 3 million people living with MS in the world will benefit from the funds that we can raise here in Australia. So thank you, Lauren. And I understand too, that one of the innovations this year, we have a new app last year. Tell people about the app. 

Lauren Hawkins: 

Yes. So we have a fantastic new app this year and it’s really your one stop shop for everything May 50k. You can download the app and from there you can register, you can record and track your activity, you can post to your blog, take photos. There’s articles to keep you up to date with what’s going on with MS Australia and the May 50k. And then you can also ask for donations. So you know when you’re out for dinner with your mates and you’re trying to remember your webpage, this totally eliminates it because you can just click on a button and there’s your QR code. So they can just scan that, takes you straight to your donation page. 

Rohan Greenland: 

Oh, that’s very innovative and it’s going to be very useful as I continue to raise funds. I’m attempting to do 200 kilometers in May, so it’s my May 200k, and that will include an attempt at a half-marathon. I’ve got psoriatic arthritis, so if my joints hold up, I’ll hope to make the 200ks. But I think one of the other great things about the May 50k is an opportunity for corporations, and companies, to be involved with teams. Can you tell us a bit more about how a company, or a corporation, or a workplace can get involved? 

Lauren Hawkins: 

Oh, 100%. So the May 50k is a great thing to bring into your workplace, because no matter how big or small you are, you can either just sign up the organization and have one team, or if you’ve got multiple locations or branches, or even departments, you can sign them all up as individual teams. And it creates some really friendly competition. It also gets your staff moving in May, which isn’t always the nicest weather to be outside. But it gets you away from your desk. And we all know how important physical activity is for physical and mental health. 

And it’s also a good way to bring everyone together on a more social side too, because you might think about doing a morning tea fundraiser, or a casual dress day. Or for example, we’ve had people say, “If you donate this much, you can decide what shirt I wear on this day.” And it’s just a fantastic way to build up workplace camaraderie and make sure everyone feels like they’re in it together, which is something we really missed the last three years. 

Rohan Greenland: 

And we’ve had some really interesting corporate teams involved and individuals. Can you tell us about any specific teams or individuals that stand out? 

Lauren Hawkins: 

Oh, there’s so many. One of the wonderful things about the May 50k is everyone brings their own story. And a great place to find out about these once you sign up, is in the group, the Facebook group. And some of the people I’ve met while working for the May 50k is… So Maryanne, who has been living with MS for 33 years, so she’s in her seventies and last year she walked, this is a crazy distance, 508 kilometers in one month. And she’s amazing. And she’s always in the Facebook group talking to people, because there’s a real community around it. 

And then on the other end we have Madeline who was diagnosed at 23, and she had a real community in her real life, not just on Facebook, come around and say, “Hey, let’s get on board.” So she had her family, friends, and her housemates join in. And then we also have people who don’t have MS, but love and support someone with MS. So Josh takes part for his mom, and his goal is to get a team of 50 people and try something really extreme or crazy, like doing 50 kilometers in one day. Because he really wants to take it to the next level, just to raise 500k in the May 50k. 

Rohan Greenland: 

No, that’s terrific. And my motivation is very much my cousin Claire who has primary progressive MS, but also my niece’s partner Joe. And he has relapsing remitting MS, and they’ve both had some difficulties, and some big challenges in their lives. But what I really admire about them is their resilience, and they’re just such positive people. I love them both to bits I’m running for them. Also if people listening want to sign up, what’s the fastest way to do it? 

Lauren Hawkins: 

The fastest way is to go to themay50k.org and hit register. And from there you can register as a team, an individual or your organization. And if you are someone like me and you’re moving for… So my mom has MS, you can dedicate your fundraising page to them. Or you can just be a good human and say, “I want a future without MS.” 

Rohan Greenland: 

That’s fantastic. Thank you so much. And now we’re moving on to Samantha Billington in Darwin. Samantha, tell us about this extraordinary thing you’ve done with the shopping center, the treadmill, and the radio station. 

Samantha Billington: 

Oh look, in my first year of doing the campaign, to be honest, I didn’t even think I was going to finish it. And by the end of it I was crossing the finish line with one of the breakfast show hosts from Hot100, to a full pub full of people clapping and cheering, and it was absolutely phenomenal. So I’d have to say today a thank you to Brent, if he’s listening. So Brent Watkins, in his first year, did 50ks on a treadmill in the local shopping center. 

And then last year he did 50ks in the local shopping center and 50ks over the month. Absolutely an extraordinary effort and it’s just made me feel absolutely amazing. And it’s been great to raise the awareness up in Darwin, in the Northern Territory, to get out on the radio station, to get people involved, to get teams built up here. And it just shows that the sky’s the limit with the May 50k. It’s not just about walking over the month, there’s so much more that we can achieve as well. 

Rohan Greenland: 

And how have you managed with your MS, and the May 50k? Have you had to take extra measures, particularly with heat sensitivity? I suppose that’s one good thing, is shopping malls are well air conditioned. 

Samantha Billington: 

Look, they are well air conditioned and I think that was a big plus for Brent. Unfortunately, I couldn’t do my 50ks on a treadmill in the day because my body wouldn’t allow it. But exercise, especially in a 50k, can be like a double-edged sword for someone living with MS. On the one hand, you can have a really bad night, so every inch of your body is tingling, you’ve got spasticity in my legs, it’s unbearable. I can’t feel my bum, and yes, that’s a thing. And I’ve got tingling everywhere, and it does feel like I’m trying to climb that unforgiving mountain. 

But on the flip side, there’s no better feeling than crashing over that line at the end of the May 50k, thinking about what you’ve managed to achieve on a personal level, and for all those people like me who so desperately need it. 

Rohan Greenland: 

No, that’s great. And I guess, taking a very sensible approach to it is listening to your body is very important. 

Samantha Billington: 

Yes, it is. And I think after living with MS now for a decade, I’ve got a bit better idea of what my limitations are. I know I could not do more than 50ks, but I feel really lucky that I can still drive myself over that 50k mark at the end of the month. And I hope that this can give help to others, particularly those that are newly diagnosed, who are experiencing a lot of grief after hearing those devastating words, “You’ve got MS.” Just because you’ve been diagnosed, there is hope on the horizon, and that’s what events like the May 50k are trying to achieve. We want to have that cure, and it is possible now, which is fantastic. 

Rohan Greenland: 

And what’s the reaction from the people at the shopping mall that come and pass? Do they all come and donate, do you generate a lot of interest? 

Samantha Billington: 

Yeah, we do. And the breakfast show guys are absolutely fantastic. Everybody knows them anyway, they wake up to them in the morning and they drive to work listening to them. So when they see them in the shopping center, I can probably say that no one’s ever done that before, so it does drum interest up. People want to know what’s going on and what it’s for. And we’ve raised some amazing funds just by being in the shopping center with the buckets, and me being there as well to be able to explain what it’s really like living with MS, and why we are trying to do this right now. 

Rohan Greenland:

Well, I’d love to come up and see that in action, it sounds fantastic. Do you have a team name? 

Samantha Billington: 

We do. So the team name is, if Sam can do it, you can. Straight to the point. But look, if I’m someone with MS and I can get up there year after year, and I can do these 50ks no matter how hard it can be on some days, so can anyone. 

Rohan Greenland: 

Oh, that’s fantastic. And so wonderful to have had that support from the local radio station as well. What would be your pitch to people thinking about taking part in the May 50k? 

Samantha Billington: 

Oh, that’s a good question. I guess at this moment in time, I think there are over 33,000 Australians living with MS. And it’s become my mission to make sure these people get the help and the cure that they so deserve. I recently heard a story from a man who was first diagnosed with MS at the age of 12. After hearing his diagnosis, he turned to his mom and said, “Why is this happening to me, mom?” To which she responded, “Why not you, son?” And I guess that’s where we are with MS at this moment in time. MS doesn’t pick or choose you, it can happen to any one of us, but it doesn’t always need to be that way. And I want the future response from a mother to a child to be, “Don’t worry, son. MS has a cure, and I’ll do everything that I can to make sure that you get that cure as soon as possible.” 

And I guess I strongly believe that striving for this response is down to us right now, when we commit to signing up to this challenge. We can make that change happen. Researchers have told us it’s possible. So while I’m still physically able, I’ll keep lacing up them shoes and standing tall and proud for my team, and putting myself through hell and back because we have a hope that we can beat this once and for all. So I hope that people listening will take this on board and say, “Do you know what? This year I’m going to join them. I want to achieve this as well.” 

Rohan Greenland: 

Well, that’s just fantastic. Thank you so much for all you do. It’s the activities of people like yourself and so many others that drive the wonderful research, and support our wonderful researchers in Australia, and are getting us well down those pathways to cures. And by putting more money into research, we’ll get down those pathways to cures faster and further. So thank you so much for that inspiring story. 

And now we’re going to our physiotherapist, Dr. Yvonne Learmonth, but this is a physiotherapist superstar. Dr. Learmonth is not only a physiotherapist and an MS Australia Fellowship recipient, but she’s also in the process of developing and testing an online education tool to train MS exercise physiologists, occupational therapists and physiotherapists to deliver an exercise program for people With MS. Yvonne, can you tell us a bit more about your wonderful work and research? You really are a fabulous person working in a really important area. 

Dr Yvonne Learmonth: 

Well thanks for that introduction, Rohan. Yeah, that’s quite humbling. Yeah, so exercise is really, really important for everyone living with MS. It’s something that you can take control of to a certain extent and you can use it as a management strategy. And the work that we’re doing is really to help show the best methods to prescribe and deliver exercise, and to work with healthcare providers so that everyone is singing from the same hymn sheet really. And is working well, and universally acknowledging the importance of prescription of exercise. And really, for people living with MS for you all to understand how important it is. 

And sometimes I do realize it can be difficult to wake up in the morning and feel motivated towards doing exercise, but always remembering at the back of your mind why you’re doing it, and how it can help you manage your symptoms. And how over the long term it can potentially reduce symptoms worsening, and disease progression, is the main messages that we want to really put out there. And I’ve been working in this area for over 10 years now. 

Rohan Greenland: 

Those are really important things, aren’t they? 

Dr Yvonne Learmonth: 

They are. 

Rohan Greenland: 

Yeah, I was just going to say, do you feel that that is sufficiently well understood? That being active and movement is so important to symptom management, symptom control? 

Dr Yvonne Learmonth: 

Well, to be honest, Rohan, my initial answer would be probably it’s not best understood. As a group of individuals, people living with MS tend to be less physically active than other people without multiple sclerosis. But also they tend to be less physically active than other people with other health conditions. And that might come historically from 20 or 30 years ago, the messages being sent out that you should be resting more if you’ve got MS. But we now know that that advice is very old, and the advice should be that you can be physically active, and exercise is important for symptom management. 

Rohan Greenland: 

And that’s something that I think is really, really, really fundamentally important. But there are challenges aren’t there? Because I think people talk about, exertion can lead to fatigue. And so what advice do you give to people about being involved in movement, and exercising, and also managing fatigue? 

Dr Yvonne Learmonth: 

Yes, of course fatigue is one of the most common symptoms in people living with MS, and it’s vital that you acknowledge that there are steps that you can take to help manage that. You need to, again, bear in mind over the long term, doing more physical activity and exercise will improve fatigue over the long term. But of course, immediately on the day that you do the exercise, and do the activity, you may feel fatigue from that. So recommendations we would suggest to people would be, perhaps only to do five minutes and then have a rest. And then after that rest period you could do another five minutes. Or if you were out for a walk, plan where you’re going to do your walks, plan where you’re going to do your runs, or your cycles, and know where there are places that you can rest. Where there are potentially parks that you can sit down and feel comfortable resting. 

So taking small steps is the best way forward. We don’t need to achieve those big, big, big distances straight from the onset. And also remember that every day will be different. So you might have a successful day on a Tuesday, but then on the Thursday if you want to repeat what you did on Tuesday, your body might be telling you, you need to do it differently today. 

Rohan Greenland: 

Now that’s really important. The other thing that really astounds me is the range of symptoms that can benefit from exercise and physical activity. Even moderate, very moderate levels of physical activity. Can you talk to us about some of those symptoms that people might not realize can benefit from being a bit more active? 

Dr Yvonne Learmonth: 

Sure. Now we’ve talked about fatigue, so always remembering that it can help with managing your fatigue long term. And that of course will help you be able to take part in other activities, be involved with your family, be involved with your friends. And with that, I would suggest that being more physically active does have social benefits, and there’s a whole host of benefits that come from that. And there’s another way that you can actively be more physically active, by going on walks with friends, or doing activities or classes with others. 

But to go back to your question, yes, it can help improve your strength, it can help improve your exercise capacity. So what I mean by that is your ability to keep going. And that isn’t only just during active exercise, but it can help you go longer doing normal activities during the day. Also, there is a lot of research identifying that it can help mental health. So symptoms such as depression are common throughout individuals with MS. And exercise has been shown to improve depression, and it can also improve symptoms of anxiety, or worrying about things. 

I’ve mentioned strength, I’ve mentioned endurance, but it can help with flexibility, it can help with your balance, which is something that definitely we need to be aware of for people with MS. And there’s some indications that exercise can also help clarity of thought, so it can help with people’s memory short term, and long term, and their understanding of how to organize their day-to-day things. 

Rohan Greenland: 

And what always resonates with me too, particularly with my little running group, I run with a group called the Berlin Boys and we like to exercise. But what really is the big motivator is the social connections, that we do it together and the benefits from a group of now… Well we’re beyond middle age, we’re in our sixties, but one is well into his seventies. But we wouldn’t keep doing it if it wasn’t for the social factors. And we run for health, but stay running and stay involved, and turn up regularly because of the social engagement. 

Dr Yvonne Learmonth: 

Yeah, definitely. Social interaction and being with people that have similar interests to you is going to keep you coming back. But we don’t always need to actually meet up in a set park with our friends to do that activity. You could be checking in over distances with how your friends are going. You could be texting them to say, “Okay, today I’m going to do three walks. I’m going to do them Monday, Wednesday, and Saturday. Will you do them at the same time as me, or will you do them with me?” So that you know your social support is actively doing something similar with you. 

So checking in before, or checking in after with our friends is another way of doing it if you can’t actually all be in the same place at the same time. And I would also strengthen that if possible, we want to chat with our friends and let them know that we might have limitations now. I know not everyone wants to expose that they’ve got multiple sclerosis, but it could be good to say to your friends that you’re wanting to do exercise with, “Okay, some days I might not always be able to attend. And it’s not that I don’t want to, but just the way my lifestyle is at the moment, I can’t always show up and be as fast, or go as far as we did in previous days.” 

Rohan Greenland: 

As an expert in physical activity, I’d love to get your comments about just walking. I think walking is an amazingly undervalued and underestimated form of physical activity, with enormous health benefits of so many dimensions. What’s your take on the simple act of walking? 

Dr Yvonne Learmonth: 

Yeah, I agree wholeheartedly with you. Recently over the Covid period, we worked with a group of physiotherapists across Europe and across Australia, and we really did want to learn what activities people with MS were doing. And walking was the number one activity for exercise that is universally done. So there’s lots of people that have the same view as you, Rohan, and just to give perhaps some guidelines around that area. Research suggests that if people can walk a hundred steps a minute, or a thousand steps in a 10 minute period of time, now that actually means that you’re doing moderate intensity exercise. And that moderate intensity exercise is important, because that’s the level that we really start seeing physiological benefits. 

So if you wanted to see how many steps you were doing on your walk, you could simply do that by checking on your phone. All our smartphones these days measure their steps, or most people have got watches that do that. And you can see how many steps you’re taking in that 10 minute period of time, and all being well, depending of course on your symptoms, or your level of progression of MS. If you can reach those targets that I mentioned in as a minimum next year, you’re already exercising just through the means of walking. 

Rohan Greenland: 

Oh, that’s fabulous. Thank you so much for that. And advice to people with MS about doing the May 50k, whether they roll, walk, run, swim, hop, skip or jump. What would be a single most important piece of advice? 

Dr Yvonne Learmonth: 

It would be to remember that it’s a whole month, that we don’t need to start off by doing everything straight away. You can build up over that time period to small and incrementally achieve those goals that you want to do. And of course, as you mentioned, it doesn’t need to be walking, it doesn’t need to be running. It could be on a bicycle, it could be in water, and you could be doing things like shadow boxing for your exercise activity. And even if you’re at a level of your disease progression, the exercising is really, really, really out of your reach, doing breathing exercises every day is going to be beneficial as well. 

Rohan Greenland: 

No, that’s terrific. Thank you so much. Now one final question to you was, I think you’re either a self-described underground endurance runner. Now what on earth is a underground endurance runner? 

Dr Yvonne Learmonth: 

Oh, perhaps I shouldn’t have said those particular words. And what I meant, I don’t tend to expose the world to the activities that I do tend to do, but I do enjoy running. I come from a running background myself, but there have been times that I haven’t been able to do it the past few years. Certainly I haven’t done as much running as I have in the past, but now I’m back up, and I’m going and I’m doing activities more, and doing these longer, longer runs. And achieving 50k over a month is something that I’m definitely able to do. So I definitely will be joining everyone on the May 50k this year, and hoping it’s great success. 

Rohan Greenland: 

No, that’s wonderful. Thank you so much. And I’m going to just go around our wonderful panel with one final question for each of you. What is your best tip for encouraging people to donate to your May 50k team, or individual calls? What’s the one single thing that helps open people’s purses, or wallets, to support you? We might just start with Lauren. 

Lauren Hawkins: 

Ah wow. I really like to ask people to either join me on my daily walk. So this year I’m aiming for a 100ks, and I get them to come with me and I can tell them a bit of a story about the May 50k, and then also about my experience with my mom with MS. And I think when people know the story, and know what a difference their donation can and will make, it just makes them so much more open to picking you to support. 

Rohan Greenland: 

Thank you very much. And Samantha, to you. 

Samantha Billington: 

Look, I think for me personally, because I get out there, I do the 50k, I’ll get on the radio, I’ll be involved in people running on treadmills. And last year we painted the town red, we went on a fundraiser around the city, and we raised a lot of awareness through that. And I think because people can hear my story and what I’ve experienced living with MS, people want to get behind us, and want to support us in doing things like this. We want more people’s support as well. So hopefully people listening to this podcast will look at our teams, and hopefully sign up, and if not, they’ll donate towards our cause. 

Rohan Greenland: 

Fantastic. And Yvonne? 

Dr Yvonne Learmonth: 

Yeah, that’s a good question. But I suppose in this day and age, especially when all money is tight in the world, really acknowledging that MS Australia is a wonderful charity and it’s a local charity. It’s a charity that Australians should all be really, really proud of. And donating to our charity really will make a difference to people that you know. It will make a difference to people that you are living with in your own community. You might not be able to see that they’ve got MS, but there are definitely people that we know that do have MS. So donating to MS Australia is very worthy and will make a difference. 

Rohan Greenland: 

No, thank you very much. And I think the publication recently have figures that show that MS is actually sharply increasing in prevalence in this country, and also elsewhere in the world. We’ve gone from 25,600 people with MS in 2017, and the latest stats we released just a month ago shows that we now have more than 33,000 people living with MS. The need for supercharging our research effort is more acute than ever. But the great news is, and this is what I like to use when I’m raising funds, is to say that we’ve got some of the very best researchers in the world right here in Australia. People like Yvonne and many others that are just doing such fabulous work, that when we talk about the pathways to cures, it’s not some great distance thing that we’ll get to in a hundred years, but we are making fantastic progress. And the faster we can get there, the better. 

And because of the wonderful researchers we have here and elsewhere in the world, when we talk about pathways cures, it’s not some far off dream, but it’s happening, and we’re going to get there with your support. So thank you very much for joining us today. And for people listening, please join the May 50k, just Google it and you’ll get there straight away. Sign up, participate, support people who are running, rolling, riding, doing 50ks in whatever way they can. And finally, again, just a very big thank you to our wonderful panelists, to Lauren, Samantha, and Yvonne. Thank you so much, and I’m really looking forward to this year’s May 50k. 

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. 

Views expressed on the Raw Nerve Podcast, including any discussions or reference to medications or treatments by podcast guests, do not necessarily represent the views of MS Australia and should not be seen as either an endorsement or rejection of a treatment.

 MS Australia does not recommend any specific treatment for people living with MS. Decisions about any treatments, taking into consideration the potential benefits and side effects for each individual’s circumstances, should be made in careful consultation with the person’s neurologist.

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Leaving our limits behind: Going the distance for MS research