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. In just over a week, the 2024 Paralympic Games will get underway in Paris, featuring more than 4000 athletes from around the world, including 160 Australian athletes competing in 17 sports. In this special two-part episode of The Raw Nerve, we chat with two Australian Paralympians competing in the games – cyclist Emily Petricola and archer Ameera Lee. Today we’re talking to Emily about what it means to wear the green and gold and to represent her country while living with multiple sclerosis.
Emily, thank you for joining us today on the Raw Nerve. Now, I can’t say we’ve got Emily from Paris because you’re not in Paris at the moment. But first of all, congratulations on your selection for the Paris 2024 Paralympic Games, your second Paralympics after Tokyo 2020. This is your second guest spot on the Raw Nerve Podcast. I think we spoke to you back in March 2023. I wonder if we could start off, you could tell us what you’ve been up to since then.
Emily Petricola:
Yeah, of course. Thanks for having me again. It’s been a busy 12 months, really. I think not too long after I last spoke to you, I went to the World Championships in Glasgow, which were like the Super World Championships, and I won the individual pursuit there. I only contested three events: the individual pursuit, the individual time trial on the road and the road race and got a couple of silvers on the road. And then we went to Rio earlier this year for the Track World Championships, where I picked up another couple of gold medals there and a silver. And then went to a Road World Cup in Italy and did a bit of a reconnaissance of the Paris course earlier this year, in I think it was May over in Europe. So, it’s been busy, lots of training and preparing for what’s about to come.
Jeremy Henderson:
Congratulations. You’ve been obviously incredibly busy and incredibly successful. And that sounds like that would be a really great preparation for the Paralympics, both in terms of just competing, but also, I guess where you must be feeling in terms of your confidence and how you’re feeling about the Paralympics.
Emily Petricola:
Yeah. Look, I don’t really know what the outcome’s going to be for any of it. It’s good to go away and get decent results and feel like you’re tracking in the right direction at least. But the games is something completely different to a World Championships or a World Cup. Everyone’s whole cycle is generally phased around this one event, so you just never know what shape anyone’s going to turn up in. But I do feel like I’m in really good shape, and my plan has always been about this event. It hasn’t been about World Championships or World Cups. They’ve been nice-to-haves rather than what we’ve been targeting. So, I’m feeling really excited just to see what actually happens on the day.
Jeremy Henderson:
I’ve got many questions to ask you about the Paralympics, but I wonder, Emily, if we can go back, just starting with your MS story for those who don’t know. I wonder if you can tell us a little bit about when you were diagnosed with MS and just a little bit about that diagnosis.
Emily Petricola:
Yeah, I was 27 years old. I was really fit, healthy, had never had any big health issues in my life. I was at a client’s office. I was running my own business, and I was walking around the office one day and they had these polished concrete floors. I had some new shoes on and I kept falling over and I thought it was just the shoes. So, I went out and bought another pair of shoes that lunchtime that day but kept falling over.
And over the course of the next couple of weeks, the numbness that had started in my feet that day traveled up to my neck. And so, I decided at that point I probably need to go and see a doctor and went and saw my GP, who immediately recognised that this was something more significant than what I had thought it would be and sent me to a neurologist. And I’m really lucky that she did and that she was that proactive. And lucky in that I was diagnosed straight away because when they did the MRIs, the lumbar puncture and everything came back pretty conclusively as MS.
So, I remember not really knowing anything about MS at the time. It was really challenging because of that and no one could tell me what it was going to be like because for all of us, obviously, it’s a really different journey. So, it was scary.
Jeremy Henderson:
Today, how does MS impact your daily life?
Emily Petricola:
Quite a bit. I’ve moved to secondary progressive, so my left side’s pretty badly impacted. I actually have hypertonicity all through my back and adductors, which makes walking and everything else really challenging, and riding a bike really hard now as well. I have cognitive issues. My hands don’t work properly. It’s a challenging disease to live with, especially because it doesn’t get better. It only tends to go in one direction, but it also shows… It’s always amazing for me to look at what I still can do despite some of the dysfunctional things that I’ve experienced in everyday life.
Jeremy Henderson:
That focus on what you can do as opposed to what you can’t, I imagine, must be a big part of riding for you.
Emily Petricola:
Yeah, that’s a hundred percent. The main motivator for me every day is despite the fact I can feel terrible and feel like I can’t do a lot of things that I would like to be doing on any given day, there’s this one thing that I can do really, really well and better than most people in the world who have everything going for them. So, that’s generally what gets me out of bed to be honest and onto the bike.
Jeremy Henderson:
Emily, what does being at the Paralympics mean to you? We’re a couple of weeks out now. How does it feel to be a Paralympian?
Emily Petricola:
It’s really emotional. Every time I get asked this question, I start crying. And it’s hard to describe because I think when you go through what you go through with this disease and what it can do to your body, you forget that there’s still so much stuff that… You don’t focus necessarily, especially when you’re first diagnosed on all of these things, that you still have the opportunity to do. And for me, the first seven years, I wasn’t able to do very much because the disease was super aggressive and it took us a long time to find a medication that helped control it.
And so, to be able to come out on the other side of that and connect with a part of really my identity from prior to being diagnosed, it’s just enormous. And to be able to showcase to the world that you can’t see necessarily what’s wrong with a lot of people with MS, but there’s a lot going on and to the point that we are able to be participants in this incredible event, celebrating the diversity of disability and what we still can do, I think it’s just so powerful and such an important thing.
Jeremy Henderson:
The next question I wanted to ask you what you love most about your sport, but I’m curious, you’re now in France. In terms of that Paralympic cycling community, have you made many friends both within Australia and internationally? Is there a community of people there that you know, that you look forward to seeing at these types of events?
Emily Petricola:
Yeah, I met my partner on the team, so that’s been successful for me on that front. But I also have really good friends both on this team and some that haven’t made the team and also others on other teams, like other national teams. So, it’s always really pleasing to come away. And for me, I don’t know if it’s because I’m a bit older or because of the way that MS itself works. Whilst the competition is super important and I want to win every race that I’m in, I always just remember that it’s just a bike race at the end of the day and what we’ve been through to get to this point and to be able to get to this point is such a celebration.
I think you’ve just got to be so proud of yourself for getting to a start line, let alone being able to line up and do whatever you can do to get a result for your country. We’re so lucky in so many ways. So, even though we might be really massive competitors when we hit that start line, when we cross the finish line, it’s always lovely to celebrate with these people who you know have also been through different things. I don’t just compete against people with MS, but you see what they’ve gone through and what they’ve been able to overcome, and I see it as a really big celebration.
Jeremy Henderson:
You’re in France now. I wonder if you could tell our listeners where you are now and what that couple of weeks prior to the actual start of the Paralympics looks like in terms of your final preparation. Is there any time for sightseeing and relaxing, or is it all business?
Emily Petricola:
It’s mostly business, to be honest. We’re in Bordeaux. We arrived yesterday. And today, we’ll go for our first ride and to start to familiarise ourselves with the area. We have been here before. We came before World last year to do a bit of a reconnaissance of this area, so we knew that it was right for us. But it will mostly be training and recovery from this point forward.
Personally, I’m always paranoid, obviously being on the MS medications, about getting sick. So, I won’t be doing anything too social outside of our little bubble and I think most of the athletes will be the same. So, we are here to do a job. As much as we’d all love to go out and to be able to go and experience the local delicacies, it’s not the time or the place, unfortunately. But maybe after the games are finished. I know a number of athletes are going on some trips around Europe to celebrate.
Jeremy Henderson:
We know the benefits for all people in terms of the healthy lifestyles and exercise. I’m curious about how your particular sport and cycling in particular, how that benefits your MS, but I’m also curious to know considering how hard you must have to train at your elite level. What are the negative impacts and side effects and things that you have to be very cautious of in terms of managing your MS?
Emily Petricola:
Yeah, it’s really interesting. When I was told last year, I think it was or might’ve been about 18 months ago, I was told that I’d moved to the secondary progressive phase, I remember saying to the specialist at that point, “Should I retire?” Because I was struggling so much with my left side and I was in pain a lot, and it was hard just to actually do the training. And he said, “Listen, we don’t know. What we know is we haven’t got any medications that can work specifically with secondary progressive yet, but what we know is that exercise is really good. We don’t know the level that you’re doing how good that or bad that is, but we know that this is good and it’s worked for you so far.”
So, definitely, he wouldn’t recommend retiring for that reason. So, I continued, but it is really challenging. And I’m really lucky that I’ve got a good team of people around me that have worked out how far we can push before I tip over the edge. And sometimes, that takes pushing yourself past the point to know where that line exists. And there’s a lot of technology available now to monitor your heart rate variability, which is all associated with your nervous system recovery and all that sort of stuff.
So, they track that all pretty closely to help manage that, but they’re also really good. The people that I work with now are exceptional at listening to me when I start saying, “I think I’m close. I’m getting close,” and pulling things back, which has historically been challenging for people within this environment to understand and respect because MS doesn’t present, as we’ve spoken about. It’s an invisible disease to many. And when you’re having a bad day, it’s not always obvious, but you can feel it yourself and you can often feel it coming.
And so, it’s hard when you say to your coach, “I don’t think I can do this.” And they say, “Well, do you just want to try?” And you always want to try as an athlete. You’re always driven to be pushing yourself, so you tend to say yes. Whereas now, the coaches, the coaching staff that I work with at Victorian Institute of Sport, if I say that, then they go, “Well, we’re just going to change this.”
And now, with all of this extra technology, and because they’ve been working with me for a couple of years, they’ve worked out what my patterns are and the trends are with me. So, as soon as we start to see some change or variability in that stuff, they’ll contact me and say, “I think we need to pull back over this next couple of days just because these metrics are looking a little bit questionable.”
So, I’m really lucky because I don’t think every coaching group would understand that, but the people that I’ve worked with for now, two years, have really done a good job and really paid attention and learnt as much as they can about the disease through working with me.
Jeremy Henderson:
Emily, I think you’ve gone somewhere to answering the next question, but I’m curious to know what the conditions are like in Bordeaux at the moment and will be when you’re in Paris, particularly as it pertains to managing heat, for example, and/or fatigue. But in terms of the environment you’ll be in, how big a factor will those things be for you?
Emily Petricola:
There’s always a potential for them to be pretty big. In Tokyo, it was a really big focus. We did a heap of work in the lead in there with our previous head of health with Keren Faulkner, and she helped alongside Jill Lackey, who was the head of support services for AusCycling at the time, a good protocol specific to me to maintaining pre-cooling. And so, we do slushies and ice towels and stuff like that to keep the body temperature down before I get to the start line, so then I’m able to perform as well as I can for as long as I can be before the heat starts to slow me down. And that’ll be the same. Those same protocols will be put in place here.
It’s okay at the moment. We arrived yesterday. It was 27 degrees, so not too hot for me. But over these next few weeks, the most important thing is getting training done early enough so that I’m not compromised leading into competition with recovery. And so, it’s about being as smart as we can. I’ve done a bit of sauna work, like just passive heat adaptation prior to coming away to try and help my body be ready for it as much as you can before you get into the warmer weather. So, it’ll be interesting to see how that has all gone and if it’s been as effective as we hope that it has been.
Jeremy Henderson:
Emily, as an elite athlete, are you always looking to the next event, or are you just laser-focused on the Paralympics in Paris? Are you thinking beyond Paris?
Emily Petricola:
I can’t, to be honest. This has been a really challenging cycle for me. Obviously, moving to secondary progressive, there’s been different challenges physically that haven’t been as easy to manage. And I think I just need to see what I achieve here and how I feel about that at the end of it as to whether or not I continue beyond it. I can’t imagine that I’m ready to walk away just yet, but I also know that my body definitely needs a break.
I’ve been having a flare for the last four weeks, so my body’s telling me that it’s ready for a break. So, I need to definitely at least take a month or so off just to let everything start to recover and regain its sense of center, but I’ll make a decision through that break period. I think it’s never good to make decisions in the lead into a big competition or during, immediately off the back of a competition. I think you need to take a bit of time away and make it in a really rational head space because you’re a long time retired.
Jeremy Henderson:
Wonderful. Emily, you’re an incredible role model. I wonder what would you say to some of our young listeners living with MS in terms of, you talked about your own diagnosis and one of the biggest challenges of just no one really being able to tell you what that future was going to look like for you and what your particular journey was going to be. If you had advice that you could give to people very recently diagnosed with MS or facing those challenges you faced when you went through that journey, what would you say to them?
Emily Petricola:
I think the biggest learning for me, and the thing that I wish I had someone tell me at the time was just don’t panic, and everything that happens, it’ll be okay. You’ll find a way forward. Your life, it is a big life-changing event, but it’s not the end of anything. It doesn’t have to be the end of anything. It’s the start of just a different way of life for you. So, don’t think about it as if it’s the end or even when big roadblocks come in your way, which they will, that’s the nature of this disease. Every time you have a relapse, it’s a big roadblock, but there’s always a way through it.
You just got to keep putting one foot in front of the other. At your lowest moment, you always hit the bottom of the circle. It always comes back up. So, just keep moving forward and trust the people around you. Surround yourself with good people. That’s the key things for me.
Jeremy Henderson:
Don’t panic and keep moving forward. Great advice, I think, for all of us. Emily, just one last question. What would you say to young people with disability aspiring to be in the Paralympics and continue to follow in your wake? What would your advice be?
Emily Petricola:
It’s a similar thing, really. You’ve got to surround yourself with good people, and you have to listen to your body and respect your body. I think that when you’re an elite athlete, there’s this almost… People revere this idea of pushing yourself beyond your limits and all of this sort of stuff. But I think when you have a disease like MS, you cannot do that. Your health is your number one priority, and that should always remain your number one priority irrespective of anything you are trying to achieve from an athletic perspective.
But as I spoke about before in terms of thinking about retiring, when I was moved to secondary progressive, I really wanted to make sure that I was making good decisions around my health as the priority. The sporting stuff is awesome because it celebrates you for what you can achieve as a person with disability, but it should never supersede your health. So, that’s probably the key thing for me.
Jeremy Henderson:
Emily, thank you so much for joining us on the Raw Nerve. I know that MS Australia, the entire MS community and so many Australians will be following your progress with great interest. Congratulations on your selection and best wishes for the games. And thank you so much for your time today.
Emily Petricola:
Thanks, 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.
