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. Thanks so much for joining us on the MS Australia Raw Nerve Podcast. And our guest today is Felicity Perdue who’s based in Hobart. Felicity has MS. We’re going to hear her story and also about her participation in The May 50K. Thanks so much for your time, Felicity. How’s the training going?
Felicity Perdue:
Ah, look, I probably should be doing a bit more, but it’s going all right. I am a fairly avid walker, which is why I kind of took up the challenge that I did. It’s not too bad. I’m feeling nervous, but ready for it.
Phil O’Neil:
Is this your first 50K?
Felicity Perdue:
No, I did the May 50K a couple of years ago, just doing the usual kind of walk, which I shouldn’t’ talk bad about, that’s fantastic. But I just kind of did it as it was. I didn’t focus too much… I did a little bit of fundraising, but I didn’t really put a whole lot of energy into it the last time I did it.
Phil O’Neil:
And you’re doing this not just for yourself, but for your mum as well, and your mum also had MS. Could you tell me about her MS journey?
Felicity Perdue:
Yeah, yeah, of course. My mum had MS. I don’t actually remember or know the exact time that she was diagnosed. My mum was a pretty fit and healthy person. We had horses and we’d go on bush walks and things like that. And the way my family was set up is it was joint custody, and I was with my grandparents most of the time. And then I was with my mum every second weekend and my sister and I would stay there. And then half of all the school holidays.
I just remember mum, she used to come to school and stuff and do a lot of craft stuff. She stopped coming and the office person, “Oh, your mum’s not well, your mum’s not well,” kind of thing, “she can’t make it.” And then I remember going over to stay with her and stuff and she just wasn’t herself. She was on crutches and then all of a sudden we had to stop staying there. And I think it was about 2004, so I would’ve been 10 that I realized what it was and realized that it was multiple sclerosis.
Phil O’Neil:
She didn’t discuss it with you then?
Felicity Perdue:
Not that I can recall. That’s the thing. I was so young. She started kind of deteriorating quite badly, and then it was struggling to walk crutches. And then within probably six to eight months of crutches, she was in a wheelchair.
But I never remember anyone in my family really sitting down to discuss it with me. So yeah, it’s kind of complicated when I look back on it because I didn’t know what it was. I had never heard of it. I didn’t know anything about it. And then within, well, by the time I was in grade seven, she was in a bed full time and she couldn’t speak or see or move or eat. So she was on full-time, round the clock kind of care.
Luckily she got to stay in her home for a while, but carers would be in and out. She passed away in 2013. It was one of those things that when she did pass away, it was obviously different complications she was in and out of hospital and respite and things like that. It was obviously devastating, but at the same time, we really grieved her as a family when MS took her ability to be a normal person, to be able to communicate and move.
Phil O’Neil:
Then for you, when did your first MS symptoms happen, and did you have any idea? Did you have an inkling that that might be what’s going on?
Felicity Perdue:
Mine happened really rapidly. I remember being at work on the Monday and I was selling cars at the time, and it used to be really cold out in the dealership. And my hands, my fingers in my left hand, they just felt numb, pins and needles numb, like you’d been out in the cold all morning.
And then I just remember throughout the day it going down my arms. And then I think towards the end of the day it was in my side and then in my left leg. And I just had this really weird feeling. And I think as anybody does, you Google a little bit, “What’s going on?” And I didn’t think too much of it. And then it got worse. And I think it might have been the Tuesday, the Wednesday I called an ambulance because I couldn’t drive. I really didn’t have much grip in my leg. It wasn’t great. And so I couldn’t drive. And I called an ambulance and I went into the emergency room and they were like, “Look, don’t really know what it is.” And my partner at the time, he said, “Oh look, her mum had MS. Do you think it could be that?”
Phil O’Neil:
Did that cross your mind at any stage as well that you might have it yourself?
Felicity Perdue:
It did. I hadn’t really thought much of it then until he said it. And then the guy in the emergency room was like, “Oh, no, MS wouldn’t really present like this.” And then it kind of got worse and my doctor sent me back into the emergency room. She called the registrar, and I just remembered being called into emergency, and it was really bad at this stage. And she was doing these tests and I had to touch my nose with my finger and my right hand was fine. And then my left hand, I just went bang, and I whacked myself in the face. And it was that mument I just knew.
I was like, “I know exactly what this is.” And I had an inkling the whole time as it started to get a little bit worse and a little bit of Googling. But it was at that mument that I was like, “This is what I think.”
Phil O’Neil:
And how long was that period, Felicity, from you going in when the first symptoms presented themselves till eventually…
Felicity Perdue:
The first symptoms presented on a Monday. I ended up in the hospital, I think it was the Friday, the Thursday or the Friday. And then they diagnosed me with transverse myelitis, which is the inflammation of the spinal cord. Then they said, Look, it’s…”
The first doctor was like, “Oh, it’s unlikely MS would present like this, but it can be MS, et cetera, et cetera.” And then the head of neurology came in and she’s a gun with MS. She’s amazing. She’s my neurologist at the mument, and I love her to death, but she’s very straight down the line and she comes in and she goes, “Felicity, it’s a 5% chance it’s not MS, so you should just pretend like you’ve got, act like you’ve got it now. We’ve got some more tests to do, but it’s most likely what it is.”
It was probably said in a bit nicer manner than that. It was four or five days within onset of symptoms to being diagnosed.
Phil O’Neil:
I have no history of MS in my family at all. Absolutely none. So like a lot of people that have MS, when we first get our symptoms, we don’t immediately get it diagnosed. You go through a lot of tests, you have a lot of possibilities. You never actually have somebody, certainly within the timeframe that you had, to be diagnosed right away. In some respects, to be able to get a quick diagnosis would’ve helped you with the next steps?
Felicity Perdue:
I’m really, really thankful for that. And I think as soon as the neurologist kind of knew who I was and she actually knew my mother, she was part of my mum’s treatment team and my dad’s best friend who was pretty much like an uncle to us, he actually had it as well. And she knew him, so she knew them both.
So I think for me, she knew that I kind of knew what was up and I knew what was going on, but with mum’s history, she just took it so seriously from the get go. And I’m so thankful for that because I know that when I first went into that emergency room, someone just straight away was like, “Oh no, it wouldn’t be this.” But just shows you how it’s one different person could be so different.
Phil O’Neil:
And you have such a good relationship with your neurologist as well, which is so important, isn’t it? Because you want that human aspect to everything as well. And if you feel that you’ve been treated from a clinical perspective, it’s very difficult to, I guess, conceptualize what’s going on?
Felicity Perdue:
Definitely. And she said to me, and this is when I was in the hospital, she said, “Felicity, you’re probably one of the worst people to get it because you’ve seen two of the worst cases.” At the time that mum had it, it was the worst case that they’d ever seen in Tasmania. It was horrible. It was just so quick and so fast. And my, may as well be an uncle, who had it as well, he was primary progressive, really, really bad.
And she said, “You’re probably one of the worst people to get MS because you’ve seen just two of the worst cases.” It was so nice for someone to have known two people that I know with it, and to be able to tell me, “That’s not what it’s going to be like for you. We can do this and we can do that.”
Phil O’Neil:
And to humanize it as well, to actually speak to you on that level, but at the same time wants to be reassured.
Felicity Perdue:
I couldn’t be more thankful for the treatment team and the treatment course they went down as well.
Phil O’Neil:
So are you relapsing remitting?
Felicity Perdue:
Yes, I am relapsing remitting. I’ve been stable since my diagnosis.
Phil O’Neil:
And how long ago was that?
Felicity Perdue:
2019.
Phil O’Neil:
Did you have an idea of what you wanted to do in terms of medication and the way you were going to take things forward?
Felicity Perdue:
I went in, I think I left hospital and then I had to go and get a lumbar puncture, there was the final thing to tick off to say, “Yes, it’s definitely MS.” And then I turned up to my neurologist, which was actually her fellow at the time. He starts talking about treatment. I was like, “Oh, so I’ve got it.” And he’s like, “Oh, yeah.” No one had actually said to me.
I was like, “Well, look, I’d assumed I had, so don’t worry.” We’re going with that. And he kind of sat me down and took me through a few different treatment options. I’ve been really good ever since.
Phil O’Neil:
How often do you get your scans? You mentioned you were stable. So I take it there’ve been no changes from the initial MRIs in 2019?
Felicity Perdue:
So I’ve had no changes. I have them six monthly.
Phil O’Neil:
What are the plans going forward with your neurologist and also with your medication?
Felicity Perdue:
With the Lemtrada, it’s two lots of the treatment. So a year apart, one five days, one three days, and then if things stay stable, then hopefully I’ll never have to have it again, but you can have three, four things sometimes, people have had five rounds, but the idea is that it’s two rounds and you should stay pretty stable. So for me, I have to have monthly blood tests for five years.
Phil O’Neil:
For someone that’s absolutely petrified of needles I’m probably the worst person to have to have monthly blood checks. People go, “What are you doing?” “I’m going for an MRI.” “An MRI?” “Yeah, yeah. It’s only a 90 minute one, this one.” “A 90 minute one?” “Oh yeah, that’s fine.”
Felicity Perdue:
It’s just the brain today.
Phil O’Neil:
Yeah, that’s right. When you go in there, you go, “Is this going to be the spinal cord as well?” And they go, “No, no.” “Oh, that’s okay then.” They’re little victories.
Felicity Perdue:
I got a letter in the mail with my next MRI, which is in May, and usually every MRI I’ve had has been at 6:00 AM and it’s at 11:40 morning. And I looked at it and I said to my partner, I said, “Look at this,” I said, “it’s an MRI that’s not first thing in the morning.” But it’s just a way of life.
Phil O’Neil:
And when I first had the MRI I was petrified. You feel like you’re sort of caught in something that you don’t really understand and you’re looking at everything that’s going on around you from the outside in a lot of ways too. So when I first had the MRI, I was petrified, but then I got used to it.
The first time I got in there, I really had the whole claustrophobic feeling. And then I came up with the technique of not having my shoes on so I could feel the cold air on my feet. And it kind of made me realize that it was just out there.
Felicity Perdue:
I think for me, the first few times that I had an MRI, my first, kind of got diagnosed and I was going through that and I’d gone through the symptoms and I was going through all the fatigue and things from the treatment, and I’d often think of my mum and just would make me think of her a lot. And I used to really hate that.
I think just knowing that she’d been in that exact same place and position probably with the same feelings, if not worse, she would’ve never heard of it and had kids, young kids and things like that, and a single mother. So a lot harder. But now I can fall asleep in an MRI.
Phil O’Neil:
When I’m going in, I usually say to the people putting me in the technicians, I usually go, “And what’s the movie I’ll be watching today?” I think it’s very selfless of you too to be able to look back at the situation with your mother and feel that kind of empathy as well. I think I congratulate you on that because you do have a tendency to think, “Woe is me.”
I was amazed at how resilient and strong I was. Did you find that as well that you had all of these reserves of strength that you didn’t realize you had?
Felicity Perdue:
Yeah, definitely. I think for something so big. Now I look back and I still look at myself in the way that I deal with it. But I think particularly when you’re first diagnosed, I think that’s the hardest part. Or you go through your first kind of attack or serious symptoms, and I was so, so strong.
I remember obviously being sad a couple of times, but it just didn’t stop me from doing anything. It didn’t stop me. And if anything, it pushed me more to do more and it made me more grateful and thankful because I looked at my mother and Matt, who was the gentleman I was talking about before, and what they went through, and it made me so thankful. I just didn’t want to waste anything.
Phil O’Neil:
I’ve heard of the stages that people go through, including grief and anger, but most of the people I’ve spoken to go to the next stage of acceptance. For me, it was a complete lifestyle change. Did you have a big transition, a life transition?
Felicity Perdue:
Yeah, I did. But to be honest, Phil , it probably wasn’t until about a year after. So when I first got sick and I had the Lemtrada treatment, I didn’t get the feeling back for quite a while. It took, I think, a month or so to get it back in my hand, and I was working at a car yard selling cars at the time, and I was like, “You know what? I can’t work full time at the mument. I need to recover. I’m so tired all the time.”
And so I left my job and I started working at a pub, and then I was just kind of overworking myself there 12 hour days. So I was just helping out there and partying a little bit too much, ignoring everything for a while. And then it wasn’t until, I think, it was just after my second Lemtrada treatment, and I remember coming home every day after the steroids and the treatment itself, and I was like, “Oh, gosh.”
It made me so thankful for when I felt well and made me realise how much I don’t want to have to go through that’s just treating it, let alone have things to do that. That was kind of when everything changed for me. And when I started, I used to exercise a bit, but I got really into my exercise and going to the gym a lot and running. And I got a dog and I hadn’t had them for a while. And I got a dog during COVID, this toy poodle and her and I’d get out every day. And it was just this whole new lease on life.
Phil O’Neil:
And it’s funny with a lot of people that have MS, when you try to explain you’ve got this chronic condition, they’ll go, “I can’t see anything at all.” I imagine you get that a lot too because you’re probably the healthiest looking person with MS I’ve ever seen.
Felicity Perdue:
I get it a lot. And it’s funny now because one of my symptoms, I get Botox injected into my trapezium muscle and my neck because they just spasm and they just seize up. And I’ll get stuck with wry neck really quite badly. And my boss, she’s got a chronic illness as well, completely different. But it was good when I started working here and I told her about it and she can tell now, I’ll walk in and normal person wouldn’t tell, I look great. And she’s like, “Oh, you’re a bit stiff today. When’s your Botox due?”
Phil O’Neil:
When you were first diagnosed, did you find it hard to tell your friends and people around you that you had MS? And was that because you were worried about how they would react to you?
Felicity Perdue:
Yeah, definitely. Actually with my dad, because he’d obviously known what had happened to mum and his mate and stuff, I probably didn’t tell him for a couple of months. We just didn’t bring it up. He knew that when I was in hospital that it could be MS, and I was like, “Oh, I’ve got to have more tests, I’ve got to have more tests.” And I just couldn’t kind of bring myself to tell him, because I knew where his head would go.
Obviously I had to tell him, and that was really, really hard. I think that was the hardest thing was to tell him and to tell my grandmother on my mum’s side, my grandmother who raised me was going through kind of dementia at the time and not chronically, but I was like, “You know what? She just doesn’t need to know. I’m just going to let that one slide.”
But yeah, it was really, really hard because I just didn’t want the people that I know that love me the most that had also seen what I’d seen to think, “That’s what’s going to happen to her.”
Phil O’Neil:
So the May 50K’s coming up, how’s the training going? Are you ready?
Felicity Perdue:
Look, I’m going to say I am totally ready. You’ll appreciate this, Phil. I did a charity walk, it was probably two and a half weeks before I was diagnosed and it was 32ks’, the charity walk was. It was for the Red Shield. It was from one church to the other church. So in Hobart it was from one suburb to many suburbs away. It was a six hour walk. And this obviously is a whole other level for the May 50K, but I have been working really hard and getting out there every day.
Phil O’Neil:
It’s really great to talk to you, and thank you so much for sharing your story as well because it helps so many people.
Felicity Perdue:
My pleasure. Thank you so much for having me.
Voiceover:
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