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. Thank you for joining us for this special edition of the MS Australia Raw Nerve podcast where we’ll catch up with two ordinary Australians living with MS, but are both doing extraordinary things. Later in the podcast, we’ll cross to Chris Morgan in Perth to hear his extraordinary story. 

Chris Morgan: 

I’m not just there to make up the numbers. I’m actually a fierce competitor. I love winning. 

Phil O’Neil: 

And we’ll hear Chris’ story later in this podcast. In the meantime, I caught up with Canberra based mum, Bronwyn Saunders, to hear her amazing story. Hello Bronwyn. 

Bronwyn Saunders: 

Hello. 

Phil O’Neil: 

So you’ve recently had an MS anniversary? 

Bronwyn Saunders: 

Yeah, 20 years ago I was diagnosed with multiple sclerosis and I decided when my birthday came around back in October; so I celebrated it a few months early just to get it out of the way, so it wasn’t going to be in my mind during the April-May period when it actually was. During my birthday, I went, right, let’s celebrate because it’s been a part of my life and I’ve thrived, not just survived. I’m truly, truly lucky, and I can say that because my sister was diagnosed two years ago, she is in her wheelchair. Life is very different for her. 

Phil O’Neil: 

So this runs in the family too. Your mom had MS when you were quite young? 

Bronwyn Saunders: 

Yes. It’s been a part of my life since I was eight years old. It’s just been quite the rollercoaster that we didn’t really need. 

Phil O’Neil: 

Yeah, of course. 

Bronwyn Saunders: 

But how my mum and dad did it, I have no idea because dad, he was a South Australian police officer. We always lived rurally. What that meant was that we would move around the state a lot. Dad wrote, “Thank you for letting me be a tourist in my home state.” So my mum, we would move and if we were living in a one or two man station, she was the one that provided not just food for dad and her family, but for any prisoners. 

She was the meat behind what was going on in the police station. She had to provide coffee, tea, biscuits and be the matron of the house and be the backup. And when she was diagnosed, she had to learn to read, write everything all over again and speak. For them to be able to continue and dad to be able to be in that role throughout his career and for her to be able to back him up, aside from when she was in hospital is amazing when you think of that. 

Phil O’Neil: 

Did you have any concern growing up that you might get MS yourself? 

Bronwyn Saunders: 

I fondly remember and don’t hold a grudge to anyone at all that I was told, “Oh, don’t worry darling. It’s not hereditary.” 

Phil O’Neil: 

And I noticed your symptoms are unusual because I’ve spoken to a lot of people with MS, your early symptoms. The first time I’d seen this, it was a sleep issue, wasn’t it? 

Bronwyn Saunders: 

Yeah. I’d just finished university. I’d moved to Canberra and I was living with my then fiancé Rod, who’s now my husband. I’d go to sleep, I wake up for a microsecond, yell his name, and then essentially just start thrusting my right-hand side of my body around. 

It was like my body ran a marathon and I would wake up exhausted. When it first happened, we were living in an apartment and it was hard because it had stairs, not a lift, you couldn’t get the gurney up. We had to work out a way for me to get down and they had to wait until I was awake enough after the seizure to be able to get down the steps. 

Phil O’Neil: 

Had you been diagnosed by this stage or did you then go through the whole? 

Bronwyn Saunders: 

No, no, no, no. This was the whole reason for the diagnosis. 0.01 of the MS population, whose MS gave me nocturnal epilepsy as well. 

Phil O’Neil: 

And so then you went and saw a neurologist. They obviously found out about the history of MS in your family. 

Bronwyn Saunders: 

I had a neurologist here in Canberra before I had a GP. The person who met me at the Canberra Hospital ended up being my first neurologist. I actually had to find a GP that would open up its books so I could get a referral to be able to go and see him privately to get all the results. 

Phil O’Neil: 

A lot of hoops to jump through that a lot of people don’t realise. Did it become immediately evident to both him and you that this was MS? 

Bronwyn Saunders: 

Yes, we were able to get diagnosed fairly quickly. I’ve heard stories of it taking years, but three to four months. 

Phil O’Neil: 

But you must have had some idea that it may have been MS. No, you didn’t? 

Bronwyn Saunders: 

When he told me, he initially told me it was epilepsy the first, and I went, “Oh, thank goodness. Oh, it’s not MS.” I was like, “It’s all right. It’s not hereditary.” I went back a fortnight later after the MRI and he went, “Actually it is MS.” I don’t remember what else happened in that consultation, but I left his room in Canberra. There are these designed bus stops which are round, and they look like a bomb shelter, beige and orange. 

And I sat in the one outside of his offices, for about three hours crying, just not knowing what to do because that was my worst nightmare. I knew it was ahead of me and couldn’t deal with that. I wasn’t as strong as my mother. I was the first person in our family to go to university. Just finished my degree. This was not the life I was going to be living. 

Phil O’Neil: 

No, of course. 

Bronwyn Saunders: 

Nothing was going to stop me doing what I was going to do. So I get diagnosed, finished my graduate year because I’d started at the taxation office as a public servant and then enrolled myself into a taxation master’s just to prove that I could still do anything I damn well wanted to. 

Phil O’Neil: 

It’s 20 years down the track. How much has changed then, and what different direction has your life taken? 

Bronwyn Saunders: 

Wow. Well, when I was first diagnosed, I was told I shouldn’t expect to be employed for longer than five years. And that the type of medication we went on to first off, that I wasn’t allowed to get pregnant. I get to say I am so proud of the fact that I survived 17 years as a public servant in the federal government. 

I lasted 17 years and it was the MS that saw it come to an end because of my cognition. I wasn’t as fast as I was when I first started. And it’s not just because of my age. So there were cognitive issues, and that’s the big killer for me. That was the hardest thing for me to accept and still is. And I still have a large ego about it, and I’ll deny that I ever agreed that it was cognitive. 

And it’s been hard, but I’ve always had both the CPSU and MS Plus by my side when I’ve needed to fight for my job because of the MS, which is ridiculous. But the other thing that I’m really proud of is the fact that I was able to have kids. 

Phil O’Neil: 

And how many children do you have now, Bronwyn? 

Bronwyn Saunders: 

Just the two, one for each hand. And that’s enough. It was never a part of my overall life goals, but when I was told I couldn’t, I think it raised flags that, I’ll show you. My husband and I often joke about it, especially when they’re being little terrors as children can be. 

Phil O’Neil: 

That’s the thing that MS teaches you once you get over the initial diagnosis. It’s not so much what can’t I do, it’s what can I do and then you suddenly realise that the whole world opens up to you because you don’t have any excuses any more not to do something, especially something that you’ve wanted to do in a long time. 

Bronwyn Saunders: 

Yeah. I was asked by my MS nurse about whether or not I was interested in a Go For Gold Scholarship. The only dream I ever wanted was to finish my law degree at Flinders University and to be the best lawyer in the whole wide world. Well, that’s gone. My close girlfriend now, Karen, she goes, “Don’t you remember what you said at that first dinner party when I first met you? 

You said you’d be a children’s author. You were very adamant.” And I went, “Oh, well yeah.” Applied for the Go For Gold Scholarship for education to learn the craft of writing because I thought that’s something that I can do no matter how sick I get. I got the scholarship. I can now say I’ve reached my dream because in October this year, my first book is coming out. 

Phil O’Neil: 

Fantastic. What’s it called? 

Bronwyn Saunders: 

It’s being published by CSIRO Publishing. It’s called Diprotodon: A Megafauna Journey. It’s about animals. So dinosaurs die. The next really big creatures are megafauna. So about the time of the wooly mammoth. But here in Australia, we had our own unique creatures as always. They’re marsupials and they’re amazing. Andrew Plant is my illustrator. His drawings are just mind-blowingly beautiful. 

Phil O’Neil: 

Exactly what you were thinking it would look like. 

Bronwyn Saunders: 

Yes. We’ve managed to capture sort of, it’s a day in a life like adventure. There’s lots of information at the back. So there’s a nice story about the day. 

Phil O’Neil: 

Entertainment for the kids, but also educational obviously. 

Bronwyn Saunders: 

Absolutely. And I think they’re going to position it for between four and nine year olds. It will also be able to be put into high schools because it’s a reference book. I’ve just picked up my first paid author gig. I’ve retired from the public service and become a full-time author. 

Phil O’Neil: 

We say, you never know what’s going to happen or what MS will throw up as a result, but a lot of doors can open and a lot of extraordinary opportunities can open up for you that you might not have thought of. Thank you so much for being part of the MS Australia Raw Nerve podcast. 

Bronwyn Saunders: 

No, I actually wanted to do this to give hope that MS is just something you’ve got to deal with. Hopefully you can do it well. I’m an MS ambassador. It was time to give back. 

Phil O’Neil: 

Fantastic. Thanks for being part of the podcast, Bronwyn. 

Bronwyn Saunders: 

Thank you. 

Phil O’Neil: 

Which brings us to our next guest on this special MS Australia Raw Nerve podcast. Ordinary Australians are living with MS and achieving extraordinary things. It’s time to introduce you to Chris Morgan from Perth. How are you? 

Chris Morgan: 

I’m good, thanks Phil. Yourself? 

Phil O’Neil: 

From one MSer to another, how are your symptoms today? 

Chris Morgan: 

Symptoms are pretty good. I’ve been to the gym this morning. The biggest thing that’s been giving me grief probably for the last year is I’ve developed trigeminal neuralgia as a complication with my MS. We all have our little things to deal with, don’t we? 

Phil O’Neil: 

And that’s something that I’ve learned about MS as well is that there’s always a tendency to want to blame every little thing on MS and it takes you a while to actually get over that when you realise that, no, that could just be my body. 

Chris Morgan: 

Yeah, it’s very easy to put everything on the MS and then once you’ve been dealing with your diagnosis for a little bit, you start to work out, “maybe this is not MS, maybe this is just because I’ve been working hard, or something like that”. 

Phil O’Neil: 

So let’s talk about your diagnosis. When did you get diagnosed and what were the symptoms leading up to it? 

Chris Morgan: 

So I got diagnosed in 2016 and the symptoms leading up to it was probably as far back as 2010. I just started to trip over every now and then, suffering from a bit of foot droop. I just thought I’d been working too hard or maybe partying a bit too hard so I didn’t pay much notice to it. And then it got to a point where I was tripping over more and more and on the way to work each day there was like a joint in the concrete and three days in a row I tripped over it and banged my knees quite badly and I went, “I need to go and sort this out, otherwise I’m not going to have any kneecaps left.” 

So I found a good GP and he said, “I don’t know what’s wrong with you, but there’s definitely something up. Your gait’s not right.” And then got sent on this journey of being sent to a sports medicine guy, x-rays and everything. He went, “There’s nothing wrong with you skeletally.” So he sent me for an MRI and then I went back, I was doing FIFO at the time, so I went back to work, come back home and he said, “Look, there is something come up on your MRI, you need to go and see a neurologist.” 

And I sort of went, “Oh holy hell.” So I went to a neurologist, more examinations, more MRIs and then the doctors turned around and said, “Do you know much about MS?” And I went, “Well, I’d done a readathon once when I was a kid, but that’s about it.” And he goes, “That’s what you’ve got.” And I sat there pretty silent and he asked me if I was okay and I said, “Yeah, I’m fine. I now know what I’m up against and we can sort this out from here on then.” 

Phil O’Neil: 

And so from there, from that point on, what was your journey like? Did you go and educate yourself as much as possible about MS or did you think I’m going to let things happen as they happen? 

Chris Morgan: 

I was sort of in a bit of two minds. My doctor that diagnosed me said, “Be wary of Googling stuff and that there is a bit of misinformation out there.” I got referred to another neurologist, I got put onto treatment. I obviously researched what the treatments were like and stuff like that. Done a little bit of research but not much and started going to the gym and things like this. 

Sort of once I found out I had MS, it was more, all right, what’s going to happen to me? What’s the future looking like? How’s it going to affect my career? I slowly worked through those processes. I think anyone that knows me, I’m not someone to sit by idle. I am a Taurus so I’m quite stubborn and headstrong. I’ve probably used that to deal with my MS as well and to put me on the pathway that I’m on now. 

Phil O’Neil: 

What’s the one thing that you’ve really learned about yourself that you didn’t know before you were diagnosed with MS? 

Chris Morgan: 

That I really have that ‘don’t give up attitude’ and don’t let anything keep me back. I just keep going forward and if I can’t do something I try and find another way to be able to do it. 

Phil O’Neil: 

And of course if you’re going to do anything, you might as well get involved in drag racing, not just drag racing in a car but do it on a motorcycle as well. 

Chris Morgan: 

So I was riding bikes on the road before my diagnosis and then after my diagnosis I dropped a really nice Ducati at the traffic lights twice and decided to stop riding on the road and trade my bike in. And then we built this drag bike that I now race. It was a trade-off between not being able to ride on the road anymore and I still wanted to ride so I went, let’s go racing, which most people think is absolutely crazy. 

Phil O’Neil: 

I have always wanted to get my motorbike license and I’ve only just got it and I’ve just turned 60 recently. I’d wanted to do it since I was 17. But once I got diagnosed I thought, okay, I’m going to go and do a whole bunch of things that I’ve wanted to do. And getting a motorbike was one of the things. And I guess I appreciate bike riding more as well because I don’t know how long I’m going to be able to do it for, I don’t know how my balance is going to go, but to be able to go out and be able to ride a motorbike. 

Chris Morgan: 

I think bike riders in general talk about this sense of freedom when you’re on a bike and it really is true. I think you feel a little bit more alive like your senses are up and everything like that. It’s a really good way to spend some time. 

Phil O’Neil: 

So drag racing, I mean what an interesting thing to do as well on the motorbike. How are you inhibited by this? What improvisations do you have to make in order to compete? 

Chris Morgan: 

Not a lot. The bike is custom-built to me, the foot pegs are lower and probably the hardest thing is to actually get to the start line. Once I’m at the start line and I’m off, everything’s all good. But there hasn’t been a lot of modifications and changes. I’m probably just like a normal person that races except I have a little bit of issue with balance and I try to use my left leg more than my right. I’ve found a way to deal with it and manage it. 

Phil O’Neil: 

I’ve read an article that you were in where you get off the bike sometimes and the other competitors look at you and go, wow, this guy’s got a really bad limp. Didn’t even realise it when you were on the bike. 

Chris Morgan: 

Especially if I go and race at a track that’s not our home track in Perth. A lot of people just see me on the bike and don’t see me walking around and stuff. And sometimes I use a stick. So there’s not many people that would race a motorbike that walks around on a stick. 

Phil O’Neil: 

You don’t just race a motorbike, you’re a champion as well. Can you tell us about some of the things you’ve won. 

Chris Morgan: 

A champion’s probably a little bit- 

Phil O’Neil: 

No, no, go with it. 

Chris Morgan: 

… a little bit too much, but I’ll take it. Last year I won the Nitro up north modified bike meeting. I’ve placed a couple of second places in the state rounds as well. So I’m not just there to make up the numbers. I’m actually a fierce competitor. I love winning. 

Phil O’Neil: 

And going forward, what are the plans? 

Chris Morgan: 

So we’ll go back up to Darwin to race at the Nitro up North this year, which is a combined event, it’s called the Triple Crown. So we have the BH supercars up there and the Australian super bikes during the day, racing overnight. August we’ll go to a place called Benaraby, which is just down the road from Gladstone. A big old bike meeting there that we did last year. There was something like 250 bikes entered for that. And then later on in the year we’ll go to the Bend Motorsport Park and we’ll race at the new track there as well. At about that time, it’ll be time for our season to kick off back in WA as well. 

Phil O’Neil: 

The idea of The Raw Nerve podcast is to try and inform and help people who’ve just been diagnosed with MS. As you well know, when you first get diagnosed, it can be quite scary. I just wonder if you have any advice that you could give to somebody that’s just been diagnosed. For me, I would say to them that initially it’s scary, but you’ll be amazed at how strong you are and you’ll be amazed at how well you can handle this. What would you say? 

Chris Morgan: 

I would back up what you’ve just said, but the other thing is also too, yes, it is scary, I would say make sure that you surround yourself with good people. Listen to what the doctors say, the treatments these days are good. They do work. Maybe look at exercising a bit more. Ask plenty of questions and have a crack. 

Don’t make it something that stops you from doing something. At least don’t and have a go. And if you are unable to do it, figure out a way to be able to do what you want to do. So definitely don’t let it hold you back. Be true to yourself and get out there and definitely give things a go. And accept your diagnosis. The sooner you accept it. I actually relate to that movie at Shaw Shank Redemption. There’s a line where they say, “You either get busy living or you get busy dying.” And I think when you get diagnosed with MS, I think they’re the two choices that you have. 

Phil O’Neil: 

Well that’s it. And do everything that you’ve wanted to do, appreciate every day. It really is an awakening in a lot of ways too, isn’t it? 

Chris Morgan: 

In a way, I think my MS diagnosis was a good thing for me. It certainly brought me back down to ground a lot and probably changed my attitude too. When I was welding and stuff like that, if I walked into a gym, I would probably fall down, but now I’m in the gym four days a week and it’s really a big part of my life now. I probably eat better. I think it makes you focus on what your body’s telling you and live a lot cleaner, better life. 

Phil O’Neil: 

It’s such a positive message, mate. It’s so good to talk to you as well. Thank you so much for giving us so much of your time and for giving us so much faith in ourselves as well. 

Chris Morgan: 

Thank you. 

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.