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.

Today we’ll be speaking with Evie Boven. Evie  was diagnosed with MS just last year  in May 2024.

Evie works as an Occupational Therapist at Grafton Base Hospital in New South Wales where she works with patients living with MS and other neurological conditions.

Evie, thank you for joining us today. Welcome to the Raw Nerve.

Evie Boven

Thank you for having me, Jeremy. I really appreciate it. So excited to be here.

Jeremy Henderson

Evie, I understand you’re an avid listener of the Raw Nerve podcast

Evie Boven

Yeah, I am. After my diagnosis last year, I am searched for any sort of resources. And the Raw Nerve podcast is one of the big ones that came up. So avid listener, and I’ve recommended it to lots of, my patients and clients. So, yeah, thank you for everything that you guys do. It’s great.

Jeremy Henderson

Now, I should add, we haven’t asked you on as a guest to the Roanoke podcast because you’re not just a listener, but somebody that’s giving us, you know both thumbs up, but we were really, really keen to talk to you about your diagnosis story. That’s something that we do quite regularly on the Raw Nerve, obviously early diagnosis is really, really important and not everyone is diagnosed with MS goes through that same diagnosis journey. For some, it can be quite smooth and straightforward. For others it can be very different. Your diagnosis journey was difficult. I wonder if you happy to talk to us a little bit about that.

Evie Boven

Yeah, absolutely, absolutely. So as I said, actually this is the anniversary of my diagnosis day last year. So, pretty recent diagnosis still, but, essentially, I’ve probably about six years ago started getting some, numbness and pins and needles in my arms.

I started having some continence changes, which isn’t really normal for someone who’s 25. But a lot of it was sort of fobbed off and going, you’re just stressed. Everything looks fine. So I’ve had. Okay, I guess it’s just me. And then lots of little things along the way that didn’t quite add up. At one point I was diagnosed with celiac disease and thyroid issues and lots of things, but no one really scanned my brain.

Anyway, I had some visual changes a couple of years ago, but again, it was put down to stress. And then last year I was on family, on the visit, to my family in Perth, and I actually, started gradually going blind. And again, I thought it was because we’d just done some fibre glassing and maybe I had some fibreglass in my eye, and I’d scratched it and saw optometrists. I saw an ophthalmologist while I was over there too and they  said, ‘’well, nothing too big’’. And I thought at that point I was probably having a stroke behind my eye, once I couldn’t see. I ended up paying for an MRI on myself, did a lot of online doctor’s consults. And they said, no, it’s probably not too much to worry about.

I said, just please write me a referral from MRI. I don’t care. I’ll pay for it. So I got on the morning that I was due to fly back from Perth and, I knew as soon as they said, working in a health background, ‘’we got to put contrasts in’’  and I knew it was going to be tumours or lesions, so I didn’t find out the results until, the following day when I was admitted to my own, emergency department, where I live in Grafton.

And yeah, I looked at the scans and it was pretty obvious and definitely a surprise. No one really…well, I didn’t really expect it, so that’s pretty well the journey.

Jeremy Henderson

What was your understanding of MS, prior to that diagnosis?

Evie Boven

Look, we all did probably the MS Readathon. think that’s probably the most common answer. But I knew like I work as an occupational therapist and I have for some time in health. I know about MS. I’ve worked with, clients with MS, patients, with MS. And yeah,  I knew about it and other sort of changing factors. I’d looked into it, but I didn’t have I don’t think anyone really has a proper understanding of anything unless you’ve gone through it. So I knew about it, knew some of the effects, but not quite to the extent of some of the signs and symptoms that or the flare ups that I get as well. So a reasonable understanding, but definitely not a professional or anything like that.

Jeremy Henderson

So you mentioned you you’re working in the health field. How do you how valuable do you think that was for you going through that diagnosis journey and recognizing that at the end of the day, it was so important for you to be your own best advocate, that you had this sense that there was something wrong, that it wasn’t being diagnosed correctly, and actually the only one who could be there in your corner and talk about what you were experiencing, what you were going through and, and asking for that, those referrals or those second opinions. How important do you think your own background and health was in sort of informing, the way you navigated that process?

Evie Boven

Yeah, I think working in health and navigating that process, it was a blessing and a curse because we do say I work with a lot of neurological patients, and we do say a lot of things, like a stroke was one of my first thoughts. And then it goes, oh, is it a brain tumour? And then, well, maybe it’s something else. So I knew something wasn’t right. And I’ve known something wasn’t right for years. But I suppose I always go off the medical advice, pushed and pushed and at one point I got a cortisone injection in my neck because I couldn’t feel my arm, which luckily that seemed to relieve things being a steroid.

But I really had to push for things. And it’s it is really tricky when medical teams and all those kind of, people are saying this, we can’t actually say something that’s physically wrong, particularly with my eyes. And yeah, that was really frustrating just knowing that, well, I’m not making myself. I’m blind, I can’t see and you’re telling me I don’t need to go to emergency?

Okay. So that’s that was really frustrating, knowing that something’s wrong. But I think again, knowing that something wasn’t right there, I could really push for those things. I said, I just I want an MRI, and I want an MRI with contrast. I want this and this and this, and I could ask for and luckily that gave it.

But I think that would be so hard to navigate if you were someone who wasn’t in that field. And it really was. I mean, for me to, just really appreciate the privilege that I had working in health, and being able to understand, those things. So definitely, amazing to be able to do that, relating to the patients and the clients that we see now, really hard at the start, I had a lot of time off work, actually.

I had a really heavy, really heavy medication initially. So I did about four months off work, and then one of my first patients I had when I came back with end stage MS. So that was really confronting. But it was one of the best things as well, because I could actually relate on that level and that ability to develop that therapeutic relationship and actually make a difference and really understand and advocate, it’s a unique position that, I mean, that I’m grateful to be in that position as well.

Jeremy Henderson

You talked about that, that diagnosis journey being frustrating, but I also imagine very frightening at times. How did you manage that and what kind of support did you have as you’re sort of working your way through that?

Evie Boven

Yeah, yeah, it was definitely, very frightening. My husband, I was dating him for a lot of years before he became my husband. But he’s always been a constant support for me, and some of my friends as well, along the journey of celiac and then hypothyroidism and then stress and all these other odd little diagnosis that were never true. I always knew something was off. So when I did say I’m really just not feeling great. They were just amazing to be able to go, okay, that’s fine  If you like, let’s just give you some time. Well, I’ve got an amazing work, amazing colleagues at work as well. So they’ve got that empathy and just being there in health like I. Yeah, you don’t look right. Something’s not right. Get yourself sorted. So I’ve had an incredible support network which has helped me navigate those things. And even when I got the diagnosis, initially emergency (department) in my hometown that some of the first people there  were my work colleagues and just couldn’t do enough, my husband and my family, of course, as well. So I’m incredibly lucky to have the support that I do.

Jeremy Henderson

Thank you Evie.  I wonder if you could talk to me about the day-to-day impact of your MS. and how you manage that?

Evie Boven

Yeah, I’m pretty good at the moment. I’m on a pretty good, DMT – a disease modifying therapy, but I do, at the end of the day, I will lose my vision. I do get a little bit fuzzy. So right now I do have a little bit of a patch here because it’s been a big day in hospital. But one of the trickiest thing or two of the trickiest things; I do have word finding difficulties. It’s only a Monday, so I should be pretty good today.

But I do stammer a little bit. I do find that I do use similar words, but generally I can be a little bit wrong. And I can’t feel my hands at the end of the day, when I’m really tired or it’s been a stressful day. So that’s really hard for when it’s time to type all those notes that I’ve delayed all day.

So I’ve got, little warming gloves that I bought off. I think that was Temu or Amazon or something like that, that I’ve got on my hands at the end of the day. Well, I, try and do as many notes as possible. And then the fatigue, of course, at the end of the day. But I feel like I manage it reasonably well, but there certainly are little reminders every time I’m feeling good that there is something there still.

Jeremy Henderson

And you touched upon this earlier, this, in terms of your role in your professional role and, and now living with MS, and, and what that gives to you in terms of your understanding of the patients that you’re treating, and the way that you’re working with those clients. How has that changed?

Evie Boven

I think just really understanding it more. I think as health professionals where we’re very empathetic and particularly occupational therapists, like we do look at the holistic view of people. But I can I really do understand now when someone says I’m fatigued and it’s what we call as OT’s, the walking wounded. But not everyone necessarily has something visible that’s, disability or impairment. A lot of the times it’s  those hidden things that could be fatigue. And, you know, you can’t feel your hands and you stammer and those kind of things. And I think that ability to advocate for those that’s walking wounded patients is what I’ll say again, always had it, but it’s definitely there a lot more. And the ability I’ve had to educate my colleagues on that and what to look for, we try and get a lot of people in the NDIS. We support, clients in the community. We see lots of patients, in the hospital just to pass on that information is fantastic. And all the resources I now have as well, because I know a few years ago you could ask me and I didn’t have great resources to provide people with multiple sclerosis, but now I’ve got a little handout that I’ve made, you know, the Raw Nerve podcasts,  like I’ve got the MS Australia website. I’ve got so many resources. So I really think I can provide a much better service. And our district as a as a whole is able to do that because we’ve done that education and said this really does matter and we need to do it right.

Jeremy Henderson

And that relationship with your patients, has that sort of changed now or do you feel that you your interactions are different now or you mentioned before and it’s very, very true that health professionals, already have that degree of empathy, or you’d hope that the majority of them do. And that was something that you brought to the role already. But I’m just wondering in terms of the way you interact, do you feel that it’s different now?

Evie Boven

Yeah, I do, I do, I just look back at my new graduate days nearly ten years ago, and when I first had someone with MS, I look back and said, yeah, I followed all the evidence, did all that, did all those things, but I didn’t have the experience that I do now and the ability to relate and understand how that can affect their daily function and just the emphasis to get them, you know, particularly in the hospital,  people are here because they’re sick and people with MS. sometimes are immuno-compromised as well. Like we want to get them out quickly. That the ability to say, well, actually this patient she’s having a flare up, she can’t use a hands right now. She’s a wheelchair user. You can’t be sending her home. That’s completely inappropriate. Even with supports, we need to get her through this stage, and make sure she’s, well, back to baseline. So I’m definitely more of an advocate for my patients and quite vocal about it. I think my colleagues would agree with that as well.

Jeremy Henderson

I wonder if you can, maybe this is a difficult question for you to answer when it’s I think you just, you made mention of the fact that it’s the actually the one year anniversary today of your diagnosis. I feel like you should be doing other things today on such a such an important day than talking to us here on the Raw Nerve. But one of the questions we often ask is, you know what? What have you learned since that diagnosis? And what do you wish you know now? Or what do you wish you would have known then that you now know? I what you’ve, you’ve learned or what you would have told yourself if you could go back in time to 12 months ago.

Evie Boven

Yeah, yeah, that’s a good question. And no better way to spend my one year anniversary time with you guys really, I think  what I know now and what I reflect on, I suppose, is again, brought to me by a lot of the patients, really just get out there and do the thing. Like, I wish I had done a lot more traveling. I wish I had gone on all those trips. Because it’s really hard, you know, I get really, really exhausted. And that’s just because I let those flare ups happen for long, not that I let them, but the flare ups were happening. Happening for so long before I actually was on treatment that now, they are  sort of permanent. When I become tired, when I become stressed, they just rear that ugly head. All things that probably could have been stopped a while ago. I really wish I had advocated harder, particularly when it was happening six years ago. When a 25 year old woman can’t feel their entire arm. That’s pretty rotten. And I wish I had have taken that further than because that was nine months of not being able to feel my arm, and I don’t even know how I got through work and typing and manual handling and everything else.

I wish I had been more of an advocate for myself back then, but now it’s very. I opening to live life to the fullest and just go do the things that you want to do. Because you see my beautiful and like, quite old, MS patients, some of them are 80s and, you know, that particular age generally we do have, you know, sometimes people in wheelchairs and things and that’s their biggest thing. Like go and do what you want to do now.

You just don’t know. Retirement’s not guaranteed. But today is.

Jeremy Henderson

Evie, tell me a little bit about your community, where you live and work and, and what that support network looks like, you talked about your husband and the wonderful support that he provides. Are, just curious about sort of that maybe that larger community then in your own hometown.

Evie Boven

Yeah, yeah. Yeah. So, Grafton, which is a small rural town in northern New South Wales, sort of three hours from Brisbane, six hours from Sydney. So quite, quite rural. But it’s really quite beautiful. My husband’s family were initially from here. My family moved up here. And then I went away to uni for years, went and worked in other places, Newcastle, Orange, all that kind of thing.

But coming back, it was really, really beautiful. It was one of those places I thought I’d never come back to. But I did, and it was only meant to be for a year. And anyway, six years later, I’m still here and I’ve bought a house  with my husband. We’ve set up a hobby farm and everything else, and through work and, met some really like minded people who are some of my best friends now.

So, yeah, very, very grateful. All the supports we’ve got around. Yeah. I really love living in Grafton. I love, living rurally and. Yeah, that’s. Yeah, I love Grafton.

Jeremy Henderson

Excellent. You mentioned the hobby farm. So in terms of your leisure pursuits and your hobbies, how do you how does MS, your MS diagnosis impact your ability to do those sort of, those other things that you love to do to unwind and to relax?

Evie Boven

Yeah, I definitely have to practice energy conservation. And anyone from health and most people diagnosed probably know that quite well. But a lot of the pacing and prioritizing what I’m going to do, those big jobs like I sear we’re always fencing, there’s always something to do with fencing. We’ve got sheep, which are some of the stupidest animals I’ve ever owned but I love them.

But they’re always just pushing fences down and other things. So really got to think about where are we going to do things? How are we going to do things, how much work is involved and split those things up? But I think also on the flip side, it’s lovely being out, in the country, having that farm and being able to just; it’s so good for my mental wellbeing, be out there with the dog and the sheep and everything else and  just clear skies. It’s, yeah, absolutely lovely.

Jeremy Henderson

In terms of your, managing your diagnosis, in terms of access to a neurologist, access to an mRNA, for example, what kind of services do you have readily available in Grafton, and what services are you having to travel distances for?

Evie Boven

So there’s nothing in Grafton at all. I have to go to the, Gold Coast. That’s where my neurologist is. And I was really lucky with how quickly I got linked up with things in hospital as well. I definitely know my privilege of working here, too, and working with some of the doctors and just saying, I need this now. But I was also blind, so it wasn’t a small thing. So yes, my, I’ve got a lovely MS Nurse, her name is Jenny. She’s up in Gold Coast Uni and Kayla, my neurologist, they’re fantastic. Generally they’re pretty good. I see them face to face once a year. Generally my husband or my father, or one of my friends might take me, otherwise telehealth. That’s been great. And I’ve reached out to the MS Nurse a very few times over email or phone calls because I feel like I’m still in that, I’m certainly still navigating how MS looks and what’s just me being sick or something else versus what’s possibly a relapse or other thing. So yeah, very, very grateful for those guys.

Jeremy Henderson

Thank you. I wonder if I can ask you, two questions. Two more questions. And we touched upon this earlier, but I just wondering, do the people working in health, do they make good patients?

Evie Boven

No, no, we don’t at all. No. Yeah. I think we’re just a little aware of things. And I know, and my manager will definitely agree with this when she hears it. She walked into the wards one time and I was in a four bedroom room with other patients just doing assessments on them. I was just so bored. I’m just going through – you don’t need to see these ones, these girls are fine, but you just are quite aware. So I think you do your research on things and you can come up with things. Hey, like I’m thinking about this. Isn’t this with any of this work? Lovely. The doctors I had were absolutely fantastic, so they were quite open to it. But, yes, a lot of doing your own assessments, particularly when, I’m the senior OT in Grafton as well. So, a lot of time I just say, well, you referred to these people to do my assessment, which I’d already do myself. So I can kind of tell you how it’s kind of. Look.. so no, we’re not great patients!

Jeremy Henderson

Now, during the chat today, you’ve spoken quite passionately about your career as occupational therapist. So I’m, I’m guessing you’re very happy in the work that you do in your chosen profession. What’s your advice for those wanting to pursue a career in health?

Evie Boven

You should and you should definitely look into the Allied health sort of pathways, like we do so much stuff. If you’re not looking into nursing, doctoring, medicine, I should say, have a look into Allied health and have a look into what, what can be offered for those degrees. You can offer to volunteer at places, try and get placements on places. If you’re not sure if you want to go uni, just ask your local hospital. Ask your local practice and see if it’s for you. It’s such a rewarding career and we can really do a lot for our, our people out there. Like it’s it’s amazing. If you think it’s for you, have a look into it. Seriously, the so many jobs.

Jeremy Henderson

Now, one last question. Before we wrap up, and this is again, a question that we are so many of our guests that are living with MS. And again, acknowledging that for you, this is a relatively recent diagnosis. But, what advice would you have for people newly diagnosed with MS?

Evie Boven

Look into support groups? There’s, if you’ve got Facebook, there’s amazing Facebook support groups out there. People have lived this thing like this diagnosis long before you have, Everyone I an individual, but there’s some really beautiful people out there who will weigh in and give advice. And there’s all different ways of coping with things; health professionals will give you on advice. Resources will give you some too. But people with lived experience, that is the best thing. You know, you support groups, if they’ve got any  local, you know, Facebook. And your friends and family, just when you’re ready to tell them, you know,, because it did take me a while. Reach out and just say, I have these issues and then they can be really aware of things as well. And in retrospect, look back and go, yeah, you did actually have a lot of trouble with that. Just then being aware, and then when you say, I’m just not up for it today, it just really makes sense to them get.

Get some support around you, you’ll need it..

Jeremy Henderson

You mentioned those Facebook groups. Have you made some valuable connections that way yourself.

Evie Boven

Yeah. I’m well on a bit of a passive watcher. I read a lot of post, write a little post and sometimes will comment here and there. I think in early days, I didn’t even want to admit that it was real. So a lot of watching and reading and, yeah, just as also as I got older, but as, lived with it for longer, I was able to then weigh in and from that health aspect too, when, when people do ask certain questions, I never say I’m an OTA or anything like that on there, but just to be thinking like, well, have you thought about this and this, I’d be probably asking you, doctor, about these kind of things as well.

Just I think it’s really useful. We can all offer something and that they’re great groups. Those ones.

Jeremy Henderson

Evie,  maybe just one last question to finish up on. But just looking ahead to the future, I wonder if there’s any, sort of project or plans that you’ve, you’re thinking of, in the future. We’re all thinking about what we’re going to be doing next month and next year, and I’m wondering what you’ve maybe got in the pipeline and also maybe what you’re now thinking of doing or doing differently that maybe wasn’t on the cards before.

I imagine with the hobby farm and, and the full time job, you’re incredibly busy and don’t necessarily need to do any more, but I’m just curious to know what you might have in the pipeline.

Evie Boven

Yeah, well, we’ve got some big holidays. Coming up. We’re going back to Perth, actually, this weekend. So that would be the first time I’ve been back since this all happened, to see family. So it’ll be lovely.

But also, we’re doing a big holiday to Europe, so, at the moment, I’m navigating how I’m going to take my treatment over there. I’m on Kesimpta  so I’ve just got to navigate through all the planes and everything. How I’ll take that and time that. The MS nurses are really helping with that and how I can alter  my schedule a little bit. And then what countries link up with our sort of health system a little bit because there are some that do reciprocal health care. So really just looking into that. So there’s a lot more planning, but yeah. First huge holiday and the extra thing you’ve got to think about now.

Jeremy Henderson

Excellent. Well, all the best with your holiday plans Evie, thank you for being a listener of the new podcast, but thank you even more for being a guest on the podcast today. And thank you for sharing your MS diagnosis with us.

Evie Boven

Thank you so much. I really appreciate what you guys do. It’s amazing.

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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.