Episode 6

Pedal power: From MS diagnosis to Paralympics Cycling Gold

On the sixth episode of the Raw Nerve, co-host Phil O’Neil catches up with MS advocate a para-cycling world champion Emily Petricola about her inspirational MS journey, her international cycling success and how the two are inextricably linked.

Emily was diagnosed with MS in 2007 at 27 years of age. She talks openly about her treatment, her newfound perspective and the competitive cycling road and goals still ahead.

“Until the day comes where I don’t feel that same passion or drive and desire to be the best that I can be, or my body starts to fail maybe beyond the point where I can ignore it, then that’s what I’ll be doing.”

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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.

Phil O’Neil:

Hello, I’m Phil O’Neil. Welcome to the MS Australia Raw Nerve Podcast.

Our guest today is, among other things, the Australian Paralympic cyclist world record holder and also gold medalist at the 2019 UCI Para-Cycling Track World Championships and the 2020 Tokyo Paralympics, and used to be a teacher, among other things.

Emily Petricola, how are you?

Emily Petricola:

I’m well, thanks, Phil. How are you doing?

Phil O’Neil:

I could have probably gone for the duration of this podcast just talking about your achievements as well. I’m sure there’s a lot that I left out there.

Emily Petricola:

Yeah, that’s fine. That’s enough.

Phil O’Neil:

It’s been a busy couple of weeks for you as well. You told me that you were training, that you were doing a rowing camp. Is that right?

Emily Petricola:

Yeah, I coach at one of the private schools in Melbourne. I’m the running the junior rowing program at Loreto Toorak, and we had rowing camp for a couple of weeks. So it’s been busy, to say the least.

Phil O’Neil:

Yeah.

Emily Petricola:

We’ve got our first regatta tomorrow, so we’ll see.

Phil O’Neil:

How much has the MS diagnosis impacted your life?

Emily Petricola:

Oh, completely. It totally turned on its head. Within a day, my whole life changed. Every expectation I’d had of my life had to sort of be adjusted off the back of the diagnosis, not really knowing or understanding what that meant at that point or what would come.

Initially you try and just keep moving forward and doing what you’ve always done, and then your body reminds you pretty quickly that that’s not viable or not possible. Not with everything, but at the same sort of level of intensity, for sure. And it took a really long time for me to recalibrate and readjust.

Phil O’Neil:

And I guess with all of us that have had the MS diagnosis, none of us, or certainly nobody I’ve ever spoken to, and including myself in this, was expecting the diagnosis at all. In fact, it came as a complete surprise to me and I imagine to you as well.

Could you tell me about that day?

Emily Petricola:

Yeah, I can. It was not one you really forget. I actually got it over the phone in the end.

Phil O’Neil:

Really?

Emily Petricola:

Yeah. I remember I went into a … I’d been at work one day and was tripping over my feet, so I’d gone to see my GP after a couple of weeks because the numbness had traveled from my feet up to my neck, and she sent me straight away to a neurologist who had suggested that one of the things it could be was MS. And as soon as he said it, I knew that it was going to be that. I just had this intuition.

And I ended up getting a phone call from him off the back of the MRIs and stuff that I’d had done, saying I needed to go in and have a venogram, because they’d found that … Well, they thought they might have seen a blood clot on the MRI, but also, by the way, I had MS. They had confirmed the MS diagnosis.

Phil O’Neil:

Yeah, right.

Emily Petricola:

So it was unexpected except for the conversation that we’d had earlier.

Then I remember feeling guilty almost once I got the diagnosis about having to tell people what it was, because no one was aware that I was going through a diagnostic process.

So yeah, I remember being shocked, and not only having to process it from my own perspective, but also then worrying about what it would mean for everyone else and how other people were going to react to it.

Phil O’Neil:

Were you aware of what MS was?

Emily Petricola:

No. All I knew about MS was what … We’d done the MS Readathon when I was at school. So certainly wasn’t any great knowledge or depth of knowledge there. And I had to sort of learn along the way.

Phil O’Neill:

And what happened after the diagnosis, in the next 24 hours?

Emily Petricola:

I remember telling people, my family mainly and my closest friends, and just sort of dealing with the fallout from that in terms of dealing with everyone’s upset.

And even myself, I remember crying the whole night. Because you don’t really … I haven’t talked about this for years, I’m getting a bit emotional, but you don’t ever expect such a life sort of changing thing to happen from something that seemed almost minor in terms of the symptom initially.

Yeah, it was confronting and wondering what it would all mean was the next thing, sort of just wondering what my life would now be, whether certain things were going to be possible anymore. Like I didn’t know if that meant I couldn’t have children or what the implication would be if I did have children and what it would mean for the rest of my life. What does it mean for your career and just your life in general?

It was a huge shock.

Phil O’Neil:

Initially, I wasn’t going to look anything up because I didn’t know what I would find and how I’d react to that.

Emily Petricola:

Yeah.

Phil O’Neil:

What scared me was, as a broadcaster, it said that some people with MS can lose the ability to speak, or at least to be able to speak properly, and I thought straight away, “Well, that’s going to impact my career.”

For you being an athlete, that would’ve been something immediately I imagine you would’ve thought about as well, how going forward this would affect your career.

Emily Petricola:

Yeah, I mean, I wasn’t a competitive athlete at the time of diagnosis. I became a cyclist off the back of my diagnosis, and kind of because of it because cycling was all I could do.

I’d always been really fit and healthy, and I remember initially I just couldn’t even walk around the block in those first few years without my body starting to do strange things. So it was really confronting. And I put on a heap of weight because I was on steroids every couple of months with relapses.

So it really did change my whole perspective on life, and my whole way of life changed. I didn’t recognize myself. You know, it’s a real loss of identity, I think, when you initially get diagnosed with this, depending on how it affects you.

It’s not necessarily a bad thing because it makes you reassess and recalibrate your life, but it certainly wasn’t easy at the time.

Phil O’Neil:

For me, I was amazed at how resilient I was because I really didn’t think that I would be able to bounce back certainly with the strength that I’ve got now.

Did you feel the same way?

Emily Petricola:

Totally. It really has shown me over the last 15 odd years since I’ve been diagnosed what I can overcome and how resilient definitely, but also how flexible I can be in my mindset around what I’m capable of on any given day.

Phil O’Neil:

So when you had this numbness throughout your body in 2007, after that, you had more relapses after the diagnosis, didn’t you?

Emily Petricola:

Yeah, yeah.

The first three years were pretty awful. I was having relapses probably … The first two years, it was definitely like every three or four months. It just impacted every part of my life really before we sort of got it under control.

It took about six years to find a medication, or for a medication to start … Well, no, we found a medication in three years, but by six years I felt confident and comfortable that I could sort of start to reengage in life in a more normal way.

Phil O’Neil:

So cycling of all things. One of the things you have a problem with: heat. Well, and then there’s balance. But for you, you had foot drop as well, didn’t you?

Emily Petricola:

Yeah, I do. I’ve got foot drop on my left side. But because your feet are fixed into the pedal, really it doesn’t affect me that negatively.

And the heat’s always a challenge that has to be managed and one that we’ve worked really hard on finding strategies around. I’m really lucky that I’ve got a team that will do that for me.

But initially, it was actually the only exercise I can do successfully ongoing. Because I’d tried a million different things before I found cycling and none of them were sustainable. But for whatever reason, even when everything’s going pear-shaped on the hottest possible day and I can’t feel what’s going on with my legs, or I’ve got heaps of numbness and tingling, I could always still turn my legs over. They don’t turn as fast, but they still turn.

Phil O’Neil:

You mentioned you’ve got a team behind you. That’s fantastic that you’ve got these people who can help you out with your career and also with the MS.

Did they have to go, in essence, back to the drawing board as well in order to figure out how they can help you in your cycling?

Emily Petricola:

Shane Kelly, who was my first and my current coach actually, I’ve just moved back to continue to work with him, and the reason is because he’s not an expert on MS by any stretch of the imagination, but he is an expert on me and understanding when to push and when to pull back, even when I don’t know where those limits are and those boundaries lie.

So I think all of the people, the consistent family, the people who’ve had great success working with me has been, that they’ve been really in tune with what my body is doing, even when I am not necessarily the best at saying no to things or pulling back on things. It’s not a strength of mine, for sure. I like to pretend like nothing’s going wrong, as many of us do. We live in denial a little bit.

Someone else called me ‘the queen of denial’, and I’ve just taken it on.

Phil O’Neil:

I’m about to turn 60, and when I go to the gym and I do my boxing classes, I push myself to the absolute limit. And sometimes I think, “Well, you’ve got to remember about the MS.” Other times I’ve got to remember, “Well, hang on, you’re nearly 60.”

Emily Petricola:

Yeah.

Phil O’Neil:

But something really drives me, and I think it was the diagnosis. Somehow it just brings out the absolute maximum out of my body. And I imagine you probably have that kind of motivation too.

Emily Petricola:

Totally.

I think one of the biggest things for me is … And I even had a meeting this week asking me why I’m doing what I’m doing, like what is my biggest motivator, and I’m like, “To prove to myself that despite all of the things my body can’t do, I can do this one thing really, really well, and there’s no one better than me at it.”

So for as long as I can, I will. Until the day comes where I don’t feel that same passion or drive and desire to be the best that I can be, or my body starts to fail maybe beyond the point where I can ignore it, then that’s what I’ll be doing.

Because you also know that there’s no guarantee on what you’re going to be able to do tomorrow. So you try and maximize what you can do today.

Phil O’Neil:

Although I don’t like to dwell on that. And I’m sure you’re exactly the same as well. I’d just like to live in the moment, which I hadn’t done for a long time, but all of a sudden, every day to me is just a brand new day and I appreciate it.

Emily Petricola:

Totally. I think that it’s definitely, definitely changed my life and my perspective in that way.

I remember I was living quite … When I think about it, it was an unsustainable lifestyle. I was working really hard, I was super driven, running my own business, trying to be a successful [inaudible 00:09:07] 12 to 14 hours, six days a week. I could never do that now, and I wouldn’t want to.

If for nothing else, it’s making me realize that there’s no amount of corporate success, monetary gain that actually makes you love life any more.

Phil O’Neil:

It really does give you perspective, doesn’t it? All the things that you used to think were so important suddenly become so irrelevant.

Emily Petricola:

Yep, totally. Far less important.

Phil O’Neil:

It must have been an amazing moment to stand on the podium to get a gold medal. It’s a sense of vindication for yourself almost too, isn’t it?

Emily Petricola:

Totally.

And also, I felt like I’ve really rewarded the people who had believed in me, like Matt and Shane right from the get go, and Harry Brennan from BIS whose worked with me since I moved back from overseas.

I would never have imagined that dream for myself, and just because those three people who have been involved right from the start continue to believe in me when it was unbelievable … You would never have picked me as a Paralympic champion in 2014, but those guys did and they believed. And so because they did, I did.

Phil O’Neil:

And so what’s next? What have you got yet to achieve?

Emily Petricola:

Well, I’m going to World Championships later this year in Glasgow. Three events on the track and one on the road. So we’ll see how that goes. And that’ll be a bit of a dress rehearsal for the Paralympics next year, but I’ll try and defend the title on the track and win in the time trial on the road as well.

Phil O’Neil:

Emily, it’s really nice to talk to you.

And thank you so much for the strength that you’ve given us, because by you talking about this and by you being able to be part of this podcast, it’s shown people that MS doesn’t have to be a life sentence in terms of holding you back from things that you want to do or new things that you can discover about yourself as well.

Thank you so much for your time.

Emily Petricola:

Thanks so much, Phil. I really enjoyed it.

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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Pedal power: From MS diagnosis to Paralympics Cycling Gold