Jeremy
Hello, welcome to the Raw Nerve. I’m your host, Jeremy Henderson. Today I’m joined by two extraordinary women from Victoria, both of whom live with MS and both of whom are planning to embark on inspiring adventures to raise awareness and funds for MS. Cate Green and Clare Riley, welcome to you both.
Clare
Thank you.
Cate
Hi!
Jeremy
Now, Cate, you’ll be familiar to some of our listeners. You were one of our early guests back in 2023, way back on episode 16. So, it’s a pleasure to have you back on the podcast. When we last spoke to you, it was ahead of your ride on the Camino Trail in Spain. And now you’re about to take on a challenge much closer to home here in Australia. And Clare, first time on the Raw Nerve, but I’ve read that you’re no stranger to podcasting.
Clare
Yeah. I’ve got a few podcasts under my belt, yes.
Jeremy
I’m sure I’ll have some questions for you later on that. But firstly, I’d like to jump straight into the adventures that you both have ahead of you. I’ve got so many questions about your upcoming trips, but I wonder if I could ask you each to briefly tell me what you have in store. We might start with you first, Cate. I wonder if you can tell me about your cycling challenge.
Cate
In 19 days from today, the 5th of April, I’m planning on riding around Australia on a push bike with my dog. Originally, hopefully it will be within a year, maybe a little bit longer depending on how much support we can get along the way. But yeah, going clockwise around Australia starting Central Victoria doing Tasmania first and then heading off west. See how far we go. So 20,000 k’s in a year is my goal.
Jeremy
And Clare, there’s a cycling connection here for you too. You’ll be traversing the world’s longest off-road cycling route, but you won’t be on a bike. What are you doing and where are you doing it?
Clare
Yeah, it’s definitely not 20,000 kilometres. So, I will be going on an adaptive bike. So, as a wheelchair user, a bicycle isn’t the best tool for me. So we, my husband and I and a bunch of supports we’ve got in place are going to be riding the Munda Biddi Trail, which like you said, is the world’s longest off-road cycling route in Western Australia and it’s 1070 kilometres and we expect that will take about a month.
Jeremy
So, Cate, coming back to you, so you’re only a few days out. How are you starting to feel with such an enormous challenge in front of you?
Cate
Now? Good. It’s been a hair-raising ride the last month or so. We’ve had some fairly significant hiccups along the way. But now I’m getting really excited. Now I’m starting to pack and get the final bits of equipment together.
We’ve had to adjust the plan along the way. The original plan didn’t come off, so we’ve learnt to be adaptive. So, I’m starting the ride on my own with my dog. I am taking my car to Tasmania and camping along the way and doing 50 to 60 k’s riding a day.
The hope is by the time I’ve got back to Geelong I’ve got a van and some support can take me the rest of the way. So, it won’t be linear to start with but we’re hoping that by the time I get to Geelong I can do it as I originally planned. But I’m very excited. Kobe and I are still doing some rides, we’re still at the gym. So, it’s getting really real now and very exciting. I’m so excited. Can’t wait to get on my bike.
Jeremy
What’s the genesis of these big plans, of these big ambitious, aspirational journeys? How do they start? How did this start for you, Clare?
Clare
So, well, my background is actually in outdoor education. So, I’ve led mountain bike trips, I’ve led canoeing, hiking, all of those kinds of things. And just before, sorry, just after I was diagnosed with MS, my husband, son and I went off grid and directed or ran an outdoor education centre for two and a half years. So, the outdoors and that kind of thing is kind of in our family’s blood.
But this particular ride, so each year I make a vision board. It’s something that I put on the background of my computer screen. And last year I had a picture of the Munda Biddi Trail next to a picture of ‘The Rig’, the ‘Not-a-Wheelchair’ wheelchair, which is what I’ll be using.
And I didn’t think anything much of it until one day I saw on social media, a friend of mine, man that I’d been to uni with, him and his partner were riding the National Trail with horses, so all the way from Healesville all the way north. And I thought to myself, I’m so sad I can’t do adventures like that anymore. And then in almost the same breath or the same thought process was, why not? So I turned to my husband and said, we should ride the Munda Biddi Trail. And he goes, okay, just straight out, okay.
And then I said, and we’re gonna raise $100,000 for MS, for MS research. And he goes, okay. And that was sort of the start of it. And so from there I, well, I’m sure we’ll get into it, but there’s a lot of planning and I’m sure Cate, you feel the planning part of it all too.
Cate
Yeah, planning is the fun part. Yeah.
Jeremy
Cate, I wonder if I can ask you, how long after the Camino Trail ride in Spain did you decide to embark on this next adventure?
Cate
I call Spain my comma moment really. It was a chance for me to go, what did I want the rest of my life to look like? I closed up my business before I left and I really wanted to ride to go, do I want to build it again? Do I want to do something different?
And I had a bit of a light bulb moment in the middle of Spain and the macedo (olive grove) I was riding through and I’d come to the conclusion that I just didn’t have the energy to build my business again. I’d burnt myself out and I was just like, well, what else can I do? And I remember the moment I was in amongst all these vineyards and I’m like, what can I do? And I’m like, I can ride a bike, I can write and I can talk. How do I turn that into something?
So I came home with those ideas but didn’t know what to turn it into. My allied health team were waiting in bated breath for some crazy idea that I would come up with next that they could train me for.
I had met somebody through this podcast the last time that turned up on my Facebook page while going through Spain and he made a comment and it sparked my attention and I looked him up and he was a cyclist that had MS that lived in New South Wales and so we struck up a bit of a conversation and he was planning to ride 1600 kilometres.
So I was very much of the opinion whatever he can do I can do. So I planned a 1500 kilometre ride around Victoria which I did last year. But when I started training for that, I googled how far is it round Australia? And so I went off to my team and I was like, do you think I could ride round Australia? And they were very supportive, like good, allied health people and went, “it’s not for us to say, but you’d have to train, agree to training.” I went; I’ll do whatever you say. So they said, you’re basically asking us to turn you into an elite athlete in 12 months. And I went, no, no, you’ve got 18 months. So I’m, I’m leaving on my birthday. So that was probably November 2023.and we’ve been training for this and planning for this ever since.
Jeremy
Indeed Cate, you’ve been practicing incredibly hard. So, I understand you rode 1500 kilometres around Victoria in September and October last year as part of that preparation.
Cate
I did that completely unassisted mainly because I couldn’t get sponsorship and so I was like, well stuff it, I’ll just do it on my own and see how I go.
Jeremy
So, Cate, I understand you promised your team originally that you wouldn’t attempt riding around Australia solo. And that you set a cutoff date of February 14th, 2024, to either secure sponsorship or push out the start date but then you faced an enormous hurdle; an enormous challenge – you’re facing homelessness. I wonder if you can tell me about that.
Cate
So, I was like, well, I am going to be homeless due to losing my business and the ramifications of MS and COVID. So I might as well turn it into something good. So I might as well just ride a bike and turn it into an adventure. So, I have been packing up my house for the last month. So that’s been hugely stressful, but the prospect of a ride and raising awareness about business owners with chronic illness and the lack of support. So my ride is called Help Me Mind My Own Business, which is very much about raising awareness for the lack of support for people with chronic illness. So, I’m very, very passionate about it.
Jeremy
Like MS Australia, you believe strongly in early diagnosis and early intervention at the start of an MS diagnosis.
Cate
See, if I had’ve known what I know now, seven years ago when I got diagnosed, I may have a home and I may, you know, COVID was a huge part of it, but the complications of not knowing what to ask back then. So, if I can help other people not end up where I am, then this ride is successful.
Jeremy
Thank you for sharing that with us Cate. Clare, for people that commit so much of their time, energy and focus to raise funds for others, there’s a huge degree of selflessness and dedication. I think Cate’s personal circumstances really speak to that at a time when nobody would bat an eyelid Cate, if you were thinking I need to put this activity on hold and focus on my own personal situation. Nobody would think anything of that and would completely understand. And yet you’re still pushing forward on this fundraising endeavour. I wonder, Clare, is that the same for you? That commitment to doing something so selfless for others. I wonder, where does that come from?
Clare
I’m really actually really grateful you said that because initially, this trip was pure selfishness. Something I wanted to do. I wanted to go on an adventure and I wanted to ride the Munda Biddi Trail with my family and go out and have a big adventure and putting the spin on it, I suppose, of fundraising means that I’m going to get people to back the trip. But now that I’ve got to this point where we’ve imported this wheelchair from America; we’ve got funding; I’ve been on in newspapers and on podcasts and that kind of thing…there’s no possibility of turning back now unless something pretty serious and MS-related comes up, which knock on wood, that’s not going to happen.
But yeah, I think that just what you mentioned before, Cate and like Jeremy, there’s so much of your story I’d like to hear more of. But you talked about how you thought about doing this 18 months before now, which is when you’re about to set off. And I think that people don’t necessarily think of or see the amount of time and energy that goes into something like this, particularly as a fundraiser or as a public kind of idea. So yeah, the amount of emails that I’m sending or phone calls I’m making or different things I’m trying to get.
So people recognise what’s happening for both the advocacy, trying to raise awareness for MS and then trying to raise funds in my case to go to MS research. But yeah, I think like I said, Jeremy, this initially was a purely selfish endeavour. I wanted to have a big adventure and this seemed like a good way to do it.
Cate
I would agree in that, in like, I can’t imagine not riding a bike now. Like for me, riding a bike is where I forget I have MS, mostly. It’s when I stop that I suddenly remember that I, because getting off my bike after riding my legs go, “we don’t want to hold you up anymore.”
So, for me, there was an element of selfishness because like running my business the cognitive fatigue of that was just exhausting and I’m like I don’t want to spend the rest of my life like that, whereas cycling makes me come alive and it’s where I can feel most normal if I can put it like that.
You know my passion is about the invisibility and like I’d like to compare/contrast with Clare on the difference between being in a wheelchair versus having like I ride a bike and I look. So, it’s not one is worse or better, but it’s different and so I feel my passion is very much about the invisibility of MS for me because that’s my story and
the challenges that more visible. I would suggest that it’s probably people make assumptions about your cognitive ability given that you can be in a wheelchair versus the other way around as I look so normal so people think I have a brain.
Clare
And I think on the kind of reverse of that is I’m not necessarily finding it difficult to get funding because of the wheelchair. So, I think, you know, people are like, oh, great, an off-road wheelchair. You know, that’s, there’s, you know, I’m looking at accessible accommodation. I’m looking at, you know, all of these things and as much as I don’t have the invisible symptoms as much, mine, my visible symptoms are exposed until there, but people see my symptoms a lot more and it’s really quite obvious. So, it looks different. It’s a different thing that we’re proposing to people.
Cate
Yeah, and I think both are important, I think…
Clare
100 % absolutely.
Cate
…it’s just, you know, I do a lot of writing and trying to get people. I mean, the classic thing that I have from particularly family is, “well you can ride a bike, so why can’t you work full time?” You know, so my my physios have given me some great answers to that line, which is a five-year-old can ride a bike, but he can’t look after himself. So, my one is, well you can work fulltime, so why can’t you ride for five hours? You know, like they’re completely different art forms, if I can put it like that.
Clare
Well, I mean, it’s this, yeah, and it’s the same as I use a walking frame at home, but a wheelchair and about or someone wears high heels when they go to work or runners when they go to the gym. Everyone’s using different tools for different things.
Cate
Yeah.
Clare
But I think like you said before, Cate, the idea of. I think. It’s. I don’t know the best way to say this, so excuse me if I say it incorrectly, it’s sometimes it’s easier for someone in a wheelchair to be advocated for or have support or whatever because like you said, you didn’t see it. People know that I’m disabled…
Cate
Yeah.
Clare
…without even having talked to me from afar down the street. Whereas it’s that invisibility, like you said, that’s difficult to kind of, which you should never have to do, but kind of prove to people.
Cate
I mean, it’s the annoying …I think also for me, like I’ve only been diagnosed seven, six and a half years ago. And I think one of the reasons why my business failed was that like now in hindsight, I can see symptomology probably five years before that. And so, it’s unlike a stroke or a car accident where there’s this definitive moment where I was able-bodied and now I’m not. There’s just this slow drip of degeneration. And so, for years I had blamed myself about my cognitive decline going, I just need to sleep better, I need to eat better, I need to get more organised, I need to…
…and then it wasn’t really until last year and I hooked up with an OT who happened to be a friend of mine and I was like, you know I’m so lazy and I need to do this and that and the other and she goes, you know that’s an MS thing don’t you? And I’m like, it’s not a moral failing, it’s actually a neurological issue and the relief of that was huge, which I then went, oh my god, like if I had’ve known back then and now my physio has gone, you know, we can train that cognitive fatigue and stuff. And I’m like, really? I didn’t know that five years ago. But trying, I think, just because it’s this slow drip, I call it the slow drip of decline. And because you can’t see it, like at least when my legs go, I know that like I can’t walk, right? Butthe cognitive stuff, the invisible stuff, the fatigue, the brain fog, the short-term memory, all of that, that people can’t see.
Like you talk about emails and phone calls, like they frighten me spitless. Like I go into absolute meltdowns because 30 minutes on, you know, computer program and they change all the time. I just get the…learnt and then they upgrade it and there’s all these other things. And so I have to re-learn and re-do, so which is why I’m barking about support for people like me. You know, the invisible side that is really hard to convince people because I sound, most of the time, sound quite normal.
Jeremy
Thank you both. Clare, your challenge in 2026 is an off-road trail in Western Australia. Tell me about the terrain that you’ll be navigating, the challenges, what that looks like and about the purpose-built wheelchair…the adaptive bike that you’ll be using.
Clare
Yeah, cool. So the trail is a, it’s not a mountain bike trail, but it’s an off-road cycling trail. So single track, four-wheel drive tracks, sometimes a little bit on-road. I don’t know much more than that about the trail. I do know, which is why we’ve got a team, my husband coming as well as we’re going to try and drag some friends along with us and other people if they’re interested in joining in.
So if a log falls over the path, they don’t necessarily remove it straight away. As it’s a bike trail, most people could just lift their bike over. So some of the logs that I’ve seen are as wide as a person is tall, so they’re quite large. There’s massive trees down in that area. It’s such a beautiful part of Australia. So, we’ll need people to help me get over these logs as well as the Adaptive Bike. And the Adaptive Bike that I have bought, it’s actually an American company, so I imported it and got it sent over here. And it’s a four-wheel, kind of like a really stripped-back go-kart. If people are interested in having a look, it’s not a wheelchair. I swear they should have sponsored me, but you know, we paid full price for that thing.
But the man who designed it is actually a YouTuber whose wife is a, I really need to check, pretty sure she’s paraplegic. She is a full-time wheelchair user. And so originally what they did together was fix two bikes together. And then they kind of adapted it to become what it is now. So it’s a power device. So we’ll have three batteries that we can interchange throughout the day. The batteries last for about 40 kilometres and we’re expecting to do 50 to 80 kilometres a day, depending on my fatigue levels, the weather, that kind of thing. Yeah, but it’s very cool.
So I started doing some training rides on that. Longest I’ve done so far is 38 kilometres in three hours. It was a big ride for me, like I think it was a month after having it. And I spent a good hour on a corrugated back road out of Drysdale, where I am on the Bellarine Peninsula. And I swear it felt like my brain was rattling inside my head by the time I got off. But I’m gonna have to get used to bits and pieces like that, so yeah, that’s what we’ve got.
Jeremy
Clare, you’ve mentioned your passion for outdoor adventure life and accessibility and you’ve touched upon that for someone without a disability, if they’re on a trail and there’s a fallen tree or another obstacle, that they can simply pick up their bike up and move around that. But that’s not possibly something that people think about very often.
You’re obviously really passionate about finding ways to overcome those kinds of challenges and to make sure that everyone can access the great outdoors and the incredible landscapes and trails that are out there to enjoy. Is that something you’ve always felt strongly about?”
Clare
Well, like I said, I have a background in outdoor ed. So I have a degree in outdoor education. I’ve been hiking since I was 16 with my parents down in Tassie. And I think it started with not so much kind of advocacy and getting it out there, but more, this is what I want to be doing. So, I need to figure out a way I can do it. And if I share that, then other people will be able to do that too.
And I use this example a lot, but I listened to a podcast with Sarah Wilson a while ago now, and she talked about how not everyone can access the whole 100 % of what’s on offer in the world ever. You know, we’ve all got things that we are busy, we don’t want to do that, whatever.
And so now instead of accessing a bush walk, which you can’t take a wheelchair on because there might be steps or big rocks or that kind of thing. I’m looking at bike trails because whilst I’m not a bike rider, I’m definitely at heart a long-distance hiker. But now I’m looking at bike trails and how I can access those with a wheelchair or this power wheelchair in this case. So, you just need to, I suppose I have just needed to look at things a little bit differently, which is, you know, that morning of me saying, I wish I could go on an adventure because my friends can do it on horses, well, I can still go on an adventure, it just looks different to what it used to.
Cate
I think that adaptability is a superpower of MS or disability; is that you get to the point where you’re like, well, how can I get round that? I mean, I had an interesting episode in the middle of my Victorian ride and I got off my bike in the middle of the Otways and my legs were dodgy. And so was like, I’ll just sit down and have something to eat and I’ll be fine. And so, I sat with my back up against a pole and my team had actually taught me to get off my bike with a pole or a tree behind me so that if I lost my balance, something would catch me. So, I slid down the pole, sat on the ground and ate my food. Felt a lot better in my head, but I went to get up and I couldn’t weight-bear. And I couldn’t, realised I couldn’t feel either of my legs and so I’m sitting on the side of the road in the middle of nowhere in Otways on my own with my bike and I’m like oops.
And I actually got out my phone to ring an ambulance because I was like well, they’ll get me 60k down the road. And I was like I’ll have to leave my bike behind and I don’t want to leave Sheba out here. So was like, I’ll just sit for another half hour and I’ll rest. So I did, I got to a point where I could actually weight-bear. I walked for about a kilometre, got my confidence back, found a flat foot for me to ride. So I rode about 10 k’s of gaining my confidence and suddenly my legs came back. And I think people looking on, when I tell that story, who were like, oh my god, that must have been scary. And I’m like, oh, you know – just part of life with MS.
Jeremy
Clare, that’s a great question. Cate, I know that you shared with me that you recently told your neurologist that you don’t want to give your life to this cause. Very sensible words. But clearly you’ve set some limits on what you’re prepared to do and how far you’re prepared to go.
Cate
I do it a state at a time. I reckon I can get to Western Australia on my own. But I won’t do the Top End by myself. And so, if I haven’t been able to drum up some support by the time I get to Western Australia…again, that adaptive thinking. I thought the other day I could send my car back on the train and fly to Cairns and then I’m happy to do the East Coast on my own. So, there’s sections that I won’t, you know, I’ve had to let go of the competitive nature of me going, I want to be the first woman or the first person with MS to circumnavigate Australia. If that doesn’t happen, so be it.
It’s more about the stories, it’s more about connecting, it’s more about giving hope to people that you can live well. My tagline for my thing is Small Change Helps. I started with three minutes in a rehab ward on an exercise bike and now I’m doing 100 k’s a day. But that’s taken five years to do it. So, I mean I think because I live on my own,
I don’t see it as any different. The Victorian ride, sorry?
Clare
It’s pretty different!
Cate
The Victorian ride was amazing. I could keep you entertained. I’ve actually almost got a book together on the Victorian ride of amazing stories of generosity of people that you meet. It restored my faith in humanity, my Victorian ride, even more than my Spain ride, where people yeah, absolute miraculous stuff where, you know, people would invite me to their place for, you know, they’d see me on the street and invite me back to their place for a meal, give me their house for the night, give me the keys, you know, just put the key under the door when you leave in the morning. You know, just phenomenal stories of people storytelling, generosity.
So, I think with that behind me, I’m a lot more confident going into, that’s why we did the practice ride. I did the practice ride thinking it was a physical challenge. Physicality is, I’ve got that down pat. It’s more the mental challenge and having some emotional support along the way and strangers are amazing. So I know that once I get down the road, I’ll be fine.
Clare
Just going back to the support because I, one of the reasons that I feel so confident and able to do it is that my husband, I know my husband will ride the whole thing. My mum and dad are coming over as road support crew with our son. My auntie and uncle are coming and talking about riding the trail with us. My sister and her husband are coming over for the end. I know that it’s not just me doing, I’m the face, sure. And I have MS…I called my mum that day and I was like, guess what we’re going to do? We’re going to ride this trail and you guys get to come along. ‘Get to’…’get to’ come along. And then when the wheelchair arrived in Australia, they’re like, this is really happening. We’re really going to Western Australia next year. And so that I suppose, you know, like, I can’t even express, but like hats off to you for being confident to do it on your own. Cause I don’t know that I would be able to do that.
Jeremy
You’re both doing these rides in very different ways.
Cate let’s unpack what you’re doing.
So, you’ll be in Tassie with a van, a dog and a bike but no support crew?
I presume normally you’re on the bike, your dog trots alongside with a support van following to make sure you’re okay, feeding you, ensuring everything’s fine. And then you get to a certain point on the trip, stop for the night and head off again the next day with a support van in tow.
But as a solo adventurer, yes, you’ve got the van, and you’ve got the dog and the bike, but you’ll ride a set distance each day with your dog and then go back and get the van. Is that right?
Cate
Somebody loaned me a van and I took it away for the weekend the other weekend and it was manual and I discovered that MS people can’t drive or this MS person can’t drive a manual car. I got outside Murchison and suddenly was like I can’t feel my right foot, not a good idea.
So we abandoned the, I also didn’t have air conditioning so heat intolerance, not good. So we abandoned the car, we abandoned the van. We’re still praying, I’ve got a few days to go. So I’m taking my car. So I’ve got a trailer for my dog now. So Kobe runs about 20 to 30 k’s a day. So the plan is that I, for instance, get to Devenport and park the car, whatever, somewhere and do a 50k ride, 50 to 60k ride. So, Kobe will run about 30 of that and then he’ll go in the trailer for the other 30 and I’ll do the other 30 and then camp somewhere for the night and then go to the next town and do the same thing around.
So, I’ll still get in the k’s that I wanted to do in Tasmania. It’s just that I have to do it all by myself. So, in an ideal world I would have a driver do that. So if I don’t have a driver I can ride 60k. If I do have a driver, I can do 80 to 100. So, it’s just a case of learning to pace. I’ve got a great allied health team that have trained me very well to recognise symptoms earlier and pace myself through the day and rest days and all of that sort of thing. I mean I feel very prepared in the sense that I’ve had a great team behind me. I mean as you said you’ve got your family and you’ve got, I don’t have that. My family is quite estranged in many ways.
So, I have got a great team. I’ve got some, so I’ve had a lot of training to recognise symptoms early and just some really strategies on eating, all of that sort of stuff, making sure everything’s really well organised, written stuff, reminders so that when my brain falls out, I’ve got some prompts to remember to… I mean my challenge is I’ve lost sensations like hunger and thirst, so I can forget to eat on a ride and I can forget to drink on a ride, which is not healthy for anybody let alone anybody with MS. So, I have reminders on my phone every 45 minutes when I’m riding, every 20 minutes in the afternoon. You know – eat, rest.
Jeremy
Cate, one quick question and one observation. The quick question would be, what type of dog do you have?
Cate
Yeah, I have a border collie with a little bit of kelpie. So he loves to run.
Jeremy
Wonderful.
Cate
He just loves to run. And actually, this was birthed because I got Kobe when I had a partner. And I was like, well, I’ve got somebody to help look after him. And then the partner left. And I was like…I’ve got a dog that loves to run.
I tried running and I busted my shoulder, I fell over, I thought I was lifting my feet and I wasn’t and landed on my shoulder and dislocated it. So I got a dog trainer in to say, do I need to give my dog away because he needs something much more than I can give as a woman with MS. And he was a great dog trainer and he was like, no, no, I think we can work around this. So, we discovered that he loves to run while I ride. So we’ve trained him to ride…to run beside my bike and he absolutely he was born to run and I was born to ride so we are a great pair so he yeah he loves it.
Jeremy
Wow. So I might just be speaking about me when I say this, but for a lot of people going camping and taking the family dog can be a huge, huge insurmountable challenge. The fact that you’re riding a bike around Australia and taking your dog with you is just, just amazing and incredibly inspiring. I wanted to ask you both about, and you’ve indeed, you’ve both touched upon this and spoken about this, but I wonder just in terms of the challenges you’re about to undertake.
What does living with and managing your MS look like at the moment and what are you going to need to take into account on sort of a day-to-day, hour-by-hour basis in terms of undertaking this activity? Maybe if I can start with you, Clare.
Clare
Well, for me, the first thing is that I’m a wheelchair user. So, we need to take over ‘The Rig’, which is what I’ll be using on the trip, as well as my…a walking frame. You know, I’m going to need lots of devices. So getting all of that over to Western Australia from Victoria, as well as using or having some of those with me.
So, we plan to have a lightweight walking frame on the wheelchair with our things that we need for the day or the night or whatever. But also, know, sort of like what Cate mentioned, we’ve got to also consider fatigue, heat. I’m also super heat sensitive. So heat. And then I’d said to my husband that he’ll need to get an e-bike because whilst he could ride the whole thing, I said, I’m really sorry, honey, I’m so glad you’re coming along, but this trip is actually not about you. It’s about me doing it. And we need him at the end of the day to still be able to cook dinner or help me shower or wash my hair or plait my hair, because I don’t have the arm strength to get my hands behind my head.
So there’s so much more than, I think, Cate, you were mentioning, there’s so much more than that we either don’t necessarily talk about or that people…I just take, it’s like the opposite of taking it for granted. I just do those things and not kind of think about them as being something that I need to, that other people don’t necessarily need to do.
Jeremy
Thank you, Clare. And Cate, you mentioned that you were very clear that you’re not going to do anything to jeopardise your health. So, if you recognise you’ve reached a point where it’s enough, that you’re absolutely comfortable with the idea of pulling up stumps and either resting or calling a halt. You recognise the importance of putting your health first and listening to your body.
Cate
Yeah, look, there’s been some like planning things, like I changed the drug that I’m on for my ride because I came up with the idea and I was on Tysabri and I managed to push that to six-weekly infusions and so I rubbed up to my neurologist who is used to me coming up with crazy ideas now and I said to her, I’m going to ride round Australia because you said I could do anything and could you organise for me to have an infusion every six weeks around Australia? And basically, she went no. It was just all, and logistically really, I don’t know. I mean, ideally, I want to be doing 450, 500 k’s a week, but when you get out on the road and there’s heat and there’s rain and there’s, it can vary.
So it’s very hard to go, well, I’m going to be in Adelaide in six weeks’ time. So I changed my drug to a six-monthly infusion. And so that I will be in Cairns in the sixth month. So I’ve had to rejig where my infusions are so that I can be in the right town. So, it’s those sort of logistical things for me that have been…I don’t necessarily need the visible assistive technology like you, so like your wheelchair and your walking frame. I will take my walking stick. It’s more the invisible stuff. So for me, it’s the reminders, it’s the plans, it’s the written plans, my stretching exercises before and after. I’ve got a list of things.
It’s more of those invisible things. It’s listening to my body earlier. You know, I can ride 15 k’s. When the weather cools down, I lose sensation in my feet to about 15, 25 k’s. I can ride with no feet. I just have difficulty stopping. It’s the heat. I’m also heat sensitive. So, keeping my core cool. The best way for me is to have a wet t-shirt and ride in. So, Kobe, I’ve just bought Kobe some cooling vests because he’s a fluffy dog and the heat doesn’t, we’re both heat intolerant, so he has a cooling vest and some boots to protect his feet.
So that’s been a challenge for me is working out what Kobe needs as well as what I need. So watching, he’s a very loyal dog. So if I run, if I ride, he will run. And so, I’ve got to watch for his fatigue levels as well as mine. For me, it’s not so much the physical stuff. It’s the stuff you can’t see that I’ve got to worry about.
Jeremy
A question for both of you. What interest have you had in your upcoming trips? I’m wondering, is it easy to attract fundraising support for your endeavours? Are people interested in what you’ve got planned? Clare, if I could start with you.
Clare
Yeah, it’s definitely up and down and like I said, I’ve sent a lot of emails and made a lot of phone calls and I think people are really interested in helping with specific things. So accommodation places in Western Australia seem to be quite happy to kind of get on board. People, you know, I’ve been on a number of podcasts and radio stations and that kind of thing. So people are loving the idea of helping…but financially hard to get that like, I need money to pay for the wheelchair and get us over there and that sort of thing. So, that has been not difficult, but definitely something that I’m working on. And at the moment I’m fundraising or trying to get sponsorship to cover the cost of the trip. And once that kind of bulk of that is done, we’ll start working on the…the $100,000 fundraising goal. With people in town, I’m in a small little town on the Bellarine Peninsula. My friends have organised a trivia night in October. So, we’ll be, like I said, people are really happy to donate prizes and that kind of thing. But it’s the big money that I’m really searching for. Yeah.
Cate
Yeah, I get that. Because I have not been successful at all. The general thing that I get when I tell them my story and what I’m doing and why I’m doing it, particularly going into business, businesses and going, I was a small business owner. I was finalist in the Bendigo Business Awards and everything was going really well. And then literally overnight I woke up and couldn’t move and then watched everything vanish. And then discovered that as a disabled business owner, there’s very little support for support. So, the way that I put it, if I’m a business owner, able-bodied business owner, and I want to employ a disabled person, the government will support that and fund it and…whereas the other way around as a disabled business owner, if I want to employ an able-bodied person to help me run my business, there is zip, zero, zilch. Well, there is, but the criteria is really, really weird. And so, I’ve gone to businesses and told them that, like, this is what, and they’re like, so get that, I’ve not thought of that. And then the line is, you what we think you’re doing is amazing. But in the current economic climate, there’s not a lot of money around. So, you know, sorry, can’t give you money, but I can get help. Right.
So I found, you know, getting out there and on the road, the help that I get along the way is amazing. You know, caravan parks have, you know, rocked up and they’re like, you can have a site for free or you can have a meal here. So that, as I said earlier, small change helps. My fundraising, if I got a dollar from everybody I spoke to around Australia, I reckon I can get $100,000 too. I think we tend to want the big solutions. Don’t get me started on the homeless issue. But we’re overwhelmed by the size of the homelessness issue or the MS issue or whatever. Whereas I’m really like, well, what can I do now to help…right now rather than the, yes, we need the big solutions, but the road towards that, we need some little stuff along the way. And so, I’m very much about getting help along the way and doing the little things and leave you know, raising the money, the $100,000 to help support, that would be awesome. And I think it just proves my point is that all those little things add up and suddenly you’ve got big change. You know, I mean, I’m the classic example, I went from, I mean, unlike you, I wasn’t, I was a musician prior to MS, wasn’t into fitness at all. So, from 52 years old, I went from zero to elite athlete now.
And that’s like miraculous for me, but it’s been very small incremental stuff. My team are already worried about what I’m going to come up with on this ride when I come back. But we’ll come back in a couple of years, Jeremy.
Jeremy
You’re certainly going to have a lot of time to come up with some great ideas as you’re out riding around Australia. Clare and Cate, how can people follow your journeys? I know that we’ll put some links in the show notes to your respective websites, but how can they follow your journeys? How can people support you, Clare?
Clare
Well, I have an Instagram account, so Clare.Riley or wheelchairmeetswilderness. You’ll be able to see both, most things on both of those, as well as a website – wheelchairmeetswilderness.org.
Cate
Facebook, I have Help Me Mind My Own Business is my Facebook page and Instagram I’m under, kobekate also help_me_mind_my own_business_…yeah they’re my main aspects at the moment to follow me around Australia.
Jeremy
Thank you both so much for coming onto the Raw Nerve today and telling us about your exciting projects. We wish you the very best and we look forward to hearing from you both on your return. So good luck and thank you so much for your time.
Clare
Thanks so much.
Cate
Thank you.
