Multiple Sclerosis (MS) is a condition that affects over 4,100 New Zealanders and millions worldwide, and each one is a life altered forever by the chronic and unpredictable neurological disease that affects the central nervous system. Women are three times more likely to be diagnosed, and the average age of diagnosis is 38. But the Multiple Sclerosis Society of New Zealand (MSNZ) is profiling some of the inspiring and formidable individuals to highlight both the challenging and uplifting aspects of life with MS as part of their 2023 Face of MS campaign. One of these inspiring individuals is Prue Young.
As a heli medic, she is no stranger to high stakes, rapid decisions, and life-saving efforts. Yet, while her career itself demands an extreme level of commitment, Prue’s personal life is no less challenging or thrilling. In addition to her demanding profession, she is an Ironman athlete, all while navigating life with MS. Prue shares with us why what we think we know about MS might be wrong, how to find the positives in any diagnosis, and the power of compassion.
For a lot of us, the last few years have been such a blur of a global pandemic, lockdowns, and uncertainty, but you also had a diagnosis of Multiple Sclerosis to contend with right in the middle of that. How did you reconcile everything?
It’s been a crazy up-and-down journey – COVID, MS, and Ironman – training so hard for something only for it to be cancelled by COVID was hard. A couple of years go by, and I decided to do another Ironman. However, this time I had MS. I did it, I completed it, and then by fluke I got a position to go to the world championships.
It’s been crazy. And then on top of that, I finished my masters at university, worked a full-time job on the rescue helicopter, and worked through Covid. So I never really had a break.
Can you take us through a timeline of when you started Ironman?
While residing in Taupo and working for St. John Ambulance, my colleagues and I provided medical support for Ironman events. One day, a coworker challenged me to complete a Half Ironman. We finished it, and then she further dared me to do a full Ironman in just three months. Initially, I was always drawn to triathlons due to my affinity for swimming and biking, but I never envisioned completing a full Ironman. I’m not a runner! Yet, within a year, I finished my first one. And it became an addiction. The exercise and getting out were a way of dealing with the stress of being a paramedic. It was my mental health support.
During this period, I undertook additional training to become an intensive care paramedic with St. John. I found a nice relationship between my job and my Ironman training – both demanding but balancing each other out. I completed my second Ironman and was hooked.
However, the Covid lockdown disrupted my training schedule, leading to the cancellation of several events. It was around this time that I began experiencing what would later be identified as symptoms of Multiple Sclerosis. Initially, I brushed off the numbness in my leg as a mere side-effect of my intensive training, but a series of hospital visits and CT scans hinted at something more serious. A few months later, I was diagnosed with MS. You could say I was lucky. In NZ, most people wait an average of 4 and a half years to get a diagnosis from when their symptoms start.
The whole world was going through the uncertainty of Covid and that seemed to consume a collective focus but meanwhile, you have this major personal diagnosis. How did you process that at the time and what did you think it meant for you?
I thought my life was over. I thought I’d lose my job, and I wouldn’t be able to train and do Ironman anymore. The wider understanding of MS, from people who are not from the medical world, is this historical perception based on someone they knew who ended up in a wheelchair or bed-bound or was really ill for the rest of their lives and they just couldn’t do anything. You struggle to find the positives in that first initial diagnosis stage. But I did quite a lot of research and looked at what medications were around, I looked at what people are up to and went searching for the positive. You reach a point where you’re like, ‘Yep, it’s all negative, but there’s got to be something positive that comes out of this.’
I went to an occupational physician and got them to talk to my neurologist and was able to keep my job. I also managed to get my neurologist to agree to one of the most highly effective medications out there. I connected with other people who were interested in the outdoors, in doing triathlons and are still exercising, and I surrounded myself with a small but really solid group of friends who have MS and all have the same positive view. And then it’s just a mindset. It’s about learning what your body can and can’t do, but still moving forward.
And to keep that focus on the positive side of things, to keep your job, to not be dragged down by the negative and this perception that you describe as being out there, were there other silver linings that you found?
I think as part of the process, you grieve what you thought you had. By slowing down and allowing yourself to go through that grief process, accepting the emotions of it, then you can look at the positives. I do lead a very busy life and I can’t say that in my life, up until these last few years, I’ve actually slowed down enough to appreciate the small things. So, when you’re forced to go through that grief process, and you’re forced to go through the emotional ups and downs of it you do slow down. It’s actually allowed me to look at the small things and find the positives. It might be something as simple as sitting and having a coffee on a beautiful blue-sky day. To me, that’s amazing. But it’s something that people just forget to do. And so you learn these little strategies and actually, it’s the same for anybody whether or not they’ve got MS or they’re just running a busy life. We actually do need to take those little micro-moments and appreciate them, because then it lets you appreciate everything else that much more. I’m very lucky. We are all very lucky. We just don’t always see it.
It seems like we are all distracting ourselves with things. We’ve got social media and the news, but also at the same time, there is so much negativity about the state of the economy, the price of apples. It seems so easy to be negative about anything. What do you think it is with you that gave you that bias toward optimism?
My Mum tells a story of me as a two-year-old walking across the preschool playground to look after a kid who had just fallen over in the playground. I’ve always had that care and compassion for others. And so I guess because I’ve put that out there into the universe, when this happened, I got it back.
I also see a positive in the fact that I now understand people more in-depth. I am able to give care and compassion at an even higher level. So it’s kind of that spiral of positivity of: you give, you get back, you give, you get back, you give, you get back – and it’s just all positive.
You have turned this care for others into your career as well. What do you think it is that has motivated you so much to focus on others?
Oh, it’s been ingrained in me. You could argue, nurture or nature. I don’t know which one it comes from. Maybe it’s because my Mum’s been like that and she was always giving back to other people and I saw that from a young age; maybe it’s just part of who I am. I have learned you get back what you give. So, if you’re giving out care, compassion and empathy, then you’ll get it back in spades. And it fills my bucket, it fills my heart to be able to give to people. You give, it’s that unconditional love, unconditional empathy, unconditional compassion. I guess in a way, you wouldn’t do my job unless you wanted to give unconditionally.
You would have seen some really tough things throughout your career. Does that compassion make it harder to process what you are doing in the moment?
In the moment, we are all, to a point, adrenaline junkies, we get that burst of adrenaline as we go out the door with our pager. That gives us the ability to handle the situation and to be able to just focus on that person. I think the care and compassion aspect of it, for me personally, comes out a lot because I know that patients get a lot out of that. And you can change somebody’s day, their thought process, their stressful emergency situation just by being there listening and not even having to jump into those life-saving skills. You do the job, you’re there, and you do the care and compassion, it’s their trauma as well. You also learn how to segregate theirs versus my own; that adrenaline probably allows you to put that barrier up but doesn’t prevent the care and compassion side of me coming through.
And then everybody has mental health. I make no excuse for that. Everybody has mental health in some way, shape or form. And I think in our job, when we see those big traumas, we need to ourselves and make sure that we know what is the right way for us to deal with it. Whether or not talking to somebody, like our work colleague, straight away is enough, or what other self-care we need. It’s different for everyone, a bath or going for a walk in nature. Personally, exercise is an important outlet. Making sure we have compassion for ourselves and seeking professional help if we need it. I guess probably for me, the ability to appreciate those small things has actually improved my ability to cope with what I see and what I do in my job.
Having that self-awareness of your mental health. Do you think that that helps you with your diagnosis as well and processing your mental health around that?
Absolutely. Between when I got my MRI and when I saw the neurologist, because of the little bit of medical knowledge that I had, I knew what my diagnosis was almost certain to be. So my MRI results were written there that I met certain criteria. And from memory, it was eight weeks between MRI and diagnosis, seven or eight weeks. By the time I walked in to see the neurologist, she turned around to me and she said, ‘So what do you think you’re about to be diagnosed with?’ And I went, ‘Oh, I’ve got multiple sclerosis.’ And she looked at me and she goes, ‘And you don’t seem upset about that.’ And I said, ‘But I’ve known this for the last six or eight weeks and I’ve already processed it. I can’t change it, and I can’t do anything about it, but what I can do is control the controllable. I can look into medications, I can know what’s going to look after me the best, I can start working on the small changes I need to make for me to still be able to function.’ And we had a really big conversation about everything, and she said, ‘Most of the time, we wouldn’t be able to have these conversations, we would have to just talk you through the diagnosis. Then we’d let you go away and have a couple of weeks to process it. You would then come back, we would do a few more tests and then decide on what medication. But I think we will just do it all now.’ And I was like, ‘Perfect, let’s go, let’s talk about it.’ Maybe it’s a bit of a blessing that I am who I am, along with having the medical knowledge, to have the ability to process that and then used it to self-advocate.
You mentioned the historical perception of MS but in so many areas, you are an inspirational representation of what is possible. Do you feel like you are an example or maybe a beacon of hope for other people who get diagnosed with MS?
Yes. I feel a want to educate. I feel I want to let people know my story so that their understanding of MS changes. So many people don’t understand the advances in treatment now. In the last ten years, MS treatment and MS understanding have rapidly improved. The medication that I’m on – TYSABRI – which Multiple Sclerosis NZ advocated for, is having incredible success at basically halting the disease progression. Not that people don’t continue to decline; they do, but it’s on a really, really, really low scale. In two and a half years, I’ve had three MRIs and I have no new brain lesions. My brain size hasn’t shrunk. I’ve had no relapses, so no new MS symptoms. People who didn’t have access to these medications would probably be relapsing and having new symptoms every three or four months over the first three or four years until they progress to what’s called “secondary progressive”, where it’s just a continuous slide downhill. But this advancement hasn’t really been talked about and I didn’t know that this was the situation until I did some research. I just think it’s lucky that it’s part of who I am to be able to continue to give back.
Multiple Sclerosis New Zealand (MSNZ) is a non-profit organisation, on a mission to coordinate and lead the advances in best practice Multiple Sclerosis care. MSNZ provides national leadership, advocacy, information, education and raising awareness. Time matters in MS, and MSNZ are committed patient advocates striving to ensure people with MS have access to the most effective treatments available early in their disease course. Early intervention is vital for preserving long-term brain health, reducing the likelihood of premature disease progression or disability.