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.
Rohan Greenland:
Hello. I’m Rohan Greenland, and welcome to The Raw Nerve, the podcast of MS Australia. Today, we have a very special episode for you. We’re introducing our new co-host, Phil O’Neil. Phil may be known to many of you as Ugly Phil. He’s a veteran Australian radio broadcaster and currently hosting Mornings on WSFM in Sydney. Phil was diagnosed with MS back in 2016, and last year, spoke publicly and very openly about his MS journey. Phil has very generously agreed to add his voice and his vast wealth of broadcasting experience and his unique and very personal insights as a person living with MS to The Raw Nerve podcast.
Rohan Greenland:
Phil, we’re really delighted to have you join us. And Phil, as co-host, you’ll help us with interviewing our guests and in particular, some of the superstars that are out there who have MS. But for today’s episode, we have you in the hot seat, and I’m keen to hear your story and your journey as someone living with MS.
Rohan Greenland:
But also on today’s episode, yeah no, it’s fantastic to have you with us. And we’ve also got with us Dr. Therese Burke from MS Australia. She’s a registered nurse and an MS certified nurse. And Therese worked over two decades at the Westmead Hospital as a clinical nurse consultant where she divided her time between clinical care and treatment of patients living with MS, and as a research manager for the MS and motor neuron disease teams. With her vast clinical care and treatment experience and knowledge and her passion and enthusiasm, I can think of no one better placed to talk about what really good MS treatment and care looks like and how we can best support Australians living with MS.
Rohan Greenland:
So Phil, over to you. I’m really keen to learn about when you were first diagnosed with MS, and what were those very early signs that you felt that something was wrong?
Phil O’Neil:
Thank you, Rohan, and hello, Therese. It’s nice to see you. Thank you so much for your time and for letting me on your podcast. My journey was probably similar to everybody else’s journey, and that is that initially, it was very hard to find out what was wrong with us and to actually diagnose this as being MS, which seems to be the case with a lot of people’s journeys. You have increments where you lead up to the eventual diagnosis, which usually comes by way of an MRI.
Phil O’Neil:
But going back to March 2016, I woke up and my face seemed to be pulling a little bit and I had a bit of a tremble on my lip, and I was concerned about that. And I went to see the doctor and we had a CAT scan and nothing turned up. A couple of days later, that went away and I didn’t think anything more about it. And then in August, I had a really unusual pain, a band across the side of my head which was both painful but unusual. Again, that lasted a couple of weeks. That went away. And again, nothing else happened. And then going to October, I woke up and the side of my face had gone numb, and I didn’t know what was wrong again. I thought maybe it was a pinched nerve so I went and saw a chiropractor. He did some work trying to manipulate the nerve and that didn’t make any difference.
Phil O’Neil:
And then bit by bit as the month progressed, it moved further and further down my shoulder, down my arm, until the left side of my body started to become quite paralyzed. And I went to see again another doctor. The doctor said, “Okay. Well, we’ll do an MRI.” And that was when I got the results. As a result of the MRI, I eventually then realized that this was MS.
Rohan Greenland:
Therese, that’s, as Phil said, quite a common course for people. I think it was similar for my cousin. But what are the important things when people find those symptoms that they can have in the very early stages of MS?
Dr Therese Burke:
Yeah, and that’s why it’s so hard. It’s really challenging for the diagnosis in the early days because, as Phil has alluded to there, so many of the symptoms can very easily be attributed to something else, particularly when you’re dealing with sensory symptoms like a bit of numbness or a bit of tingling. Most people think, “I’ve just slept wrong.” Or you’re dealing with people that are managing careers and kids so they put it down to being tired. And that can be, it can take a long time to build up to that diagnosis.
Dr Therese Burke:
Thankfully, Phil, it didn’t take too long. I guess six months is a long time, but the journey can be very frustrating for some people because I call it piecing together the puzzle. Those early days, it’s just such a difficult thing. And that’s because the symptoms can be vague. They can be sensory in nature for some people. For others, they can be really hard-hitting, like an episode of blindness with optic neuritis or losing your balance on walking. And that’s going to step you up a lot quicker, isn’t it, and get you the help faster. But they can also be intermittent, as Phil said, so you can put it down to things and then if they settle down, you forget about them and just get on with life because you’re busy, right?
Phil O’Neil:
Mm-hmm.
Dr Therese Burke:
And I think the other thing too is that symptoms can be brushed off by the person themselves, but sometimes also by healthcare practitioners. And we hear that story a lot too. So it’s important if you feel like something’s wrong to keep going back. And it’s fine to get a second opinion from somebody else if you feel like you know something’s wrong and you’re not getting the attention you think it deserves. It’s really important to know that second opinions are perfectly okay. It’s okay to keep going back and asking for help.
Rohan Greenland:
And Therese, I think it’s an important point here that I noticed that you were the author of a very good piece in the Journal of General Practice last year now. But how important is it to help GPs make sure that they can recognize early symptoms of MS and get a fast diagnosis?
Dr Therese Burke:
Yeah. Really important, Rohan. And I think that the profile and awareness has definitely increased over the last five years, and access to MRI machines is now much greater. So we’ve taken the first step in trying to educate GPs just to be aware and to have MS on the radar as something to consider and to refer on early because we know the earlier, the better.
Rohan Greenland:
And we are grateful to the College of General Practitioners for supporting initiatives to raise awareness amongst GPs and other healthcare practitioners. Now, Phil, what did you feel when you first got that MS diagnosis? How did that impact you?
Phil O’Neil:
Well, as Therese said, it was the journey of putting it all together for the doctors as well. So once the MRI diagnosis had come back, I went back to find out what was going on and I said, “Look, I’ve had this MRI. Nobody’s got back to me yet. I’m concerned about what this might be.” But I didn’t really think it was anything that was that concerning. I thought, “Well, this is something that I’m going to have to get checked out,” but at no stage did I think this was anything like MS. And then the doctor rang up, got the results of the MRI and said, “Okay, they found lesions on your brain, and I’m going to get a proper diagnosis when they call me back in a couple of moments.” And I just went and I froze because I had no idea.
Phil O’Neil:
And it was, I guess, the gravity of the situation was quite frightening because I’d no ways been really ill. I’ve really, well, I should say my entire life, I very, very rarely went to the doctor. And then suddenly to find this out was quite frightening. And then she got the call back and she said, “Okay. Well, the diagnosis is MS.” And I went… And I’ve mentioned to this to you before, Rohan, as well, that you may as well have said to me that I had kryptonite poisoning or something because I really didn’t know what MS was. I’d heard of it, but I wasn’t at all aware of what the repercussions were, which is the great thing about being able to do something like this, is we can make people aware of what MS is. So once I got told that I was diagnosed with MS, that afternoon was quite confronting and obviously very scary because I really didn’t know what to do or what to expect from that next point on.
Rohan Greenland:
And what was the next point on? Once you had your diagnosis, were you referred quickly to a neurologist?
Phil O’Neil:
Yep, yep, to a neuro. My wife and I went home. We were a bit shocked. And I mentioned this one, and I got drunk because I was petrified. I cried for about 10 hours. And I’m not much of a Googler. I am now, but at the time I wasn’t and I didn’t because I never had need to Google symptoms. So I didn’t go immediately and Google it. I sat at home, tried to process what exactly was going on, and then the next day, I woke up the next morning and I went, “Right. Well, this is it then. This is day one.” And the journey literally began that next day.
Rohan Greenland:
It must have been for a lot of people, I know it was true for both my cousin and my niece’s partner who both have MS, that they experienced very similar shock really at the diagnosis. But where did you turn for help, I suppose, while you’re waiting to see the neurologist? Or once you had your confirmed diagnosis, did you talk to friends or people you knew had MS? Or…
Phil O’Neil:
No, I didn’t. Well, the thing is, when you get, and this is another part of the diagnosis journey and the MS journey, is you don’t know who to talk to. You’re afraid to talk to people as well. You’re afraid of what people are going to think of you because you’ve got MS. And I’ve learned a lot of people have this as part of their journey. They initially go, “Well, I don’t want to let people know because I don’t know how people are going to treat me, whether they’ll treat me differently. I don’t know how my employer’s going to treat me.” I thought I was alone in these thoughts, but it turns out I’m similar to everybody else pretty much that’s had this journey. So I didn’t really speak to anybody about it.
Phil O’Neil:
And I trusted in the process, but the process itself was quite frightening because you’re going to see people that you don’t ordinarily see. You go to see a GP. You go and see a dentist. But I’d never seen a neurologist before so I had no idea what to expect. And then I was at the hospital having steroid treatment for three days in a room with other people who had MS. I went to see an oncologist. I went to see a skin cancer person. So one by one, I was going and seeing all of these experts who for them, I was just a patient. Not just a patient, but I was a patient that was coming into their office. For me, I was in a world of completely the unknown, and I didn’t know how to take the journey upon myself in terms of finding out what I should do.
Phil O’Neil:
That came later on when I decided, “Okay, I’m going to actually see if I can take control of whatever trajectory I possibly can.” But that was six weeks, I think, into it before eventually I went, “You know what? No. I’m going to find out exactly what’s going on here and what I can do.” And I think that’s the same for a lot of people. A lot of people initially, you don’t want to know. You don’t want to think about what’s going to happen to you.
Rohan Greenland:
And Therese, your research has very much been in this space of the consumer’s journey. And what are the most important things for people who are newly diagnosed with MS? What are your observations and recommendations?
Dr Therese Burke:
Like Phil said, there can be, there’s almost two different camps here. There’s people who go into the mode of they want to find out everything they possibly can about MS, and that can be a really tricky journey because as we all know, there’s a lot on the internet that isn’t true and might be misrepresented. So that can be an incredibly hard path. It’s almost like you want to gather as much information as possible to regain control of the situation. And some people do that. And other people do spill into where they just think, “Look, I’m just going to step away for a minute. I’m going to try and process what’s happening. And I’m going to, step by step when I’m ready, start to get a little bit of control back and find out information as suits me.”
Dr Therese Burke:
And there’s not a one-size-fits-all. So it’s really important to consider what type of information the patient needs, particularly at the beginning, and advise on that. And advise of what really good resources look like. Because Phil, I’m sure you had no idea at the start what was trustworthy, what was a reputable source. And it’s also a really hard thing, as Phil also said, to receive all of this information for the first or second time. It’s all new words. Like Phil, you never would’ve heard of what an MS lesion was before you had that-
Phil O’Neil:
No.
Dr Therese Burke:
… first MRI. And that would’ve been just the start of all of these medical words and terminology, lesions, relapses, MRIs or CT scans. Having all of these things, you’ve never heard these terms before because we’re dealing primarily with a young population here when they’re first diagnosed who may have never been in serious medical care before. Everything’s new. So I think just taking a deep breath, slowing down, asking for information as you need it, and hopefully you have a healthcare practitioner that’s really receptive to helping you with what you need and when you need it.
Dr Therese Burke:
I think becoming a really good self-manager is important. You need to be able to do that to gain confidence and to really feel empowered moving forward. And that takes time. That’s not going to happen overnight. And I think time is going to be your friend, particularly in those early few months, just to take things slowly and do things at your own pace rather than being forced into a box of this is what you must do and this is what when you must do it.
Rohan Greenland:
And Therese too… Oh, I was going to ask Phil first. Have you had access to an MS nurse?
Phil O’Neil:
Well, yes, I did. Initially, yes. And as Therese said there, it’s the initial journey is very confronting and frightening because Dr. Google, when you start Googling at first, the things that come back are terrifying. But then as you want to try and take control of all of your own situations and the journey as it eventuates, you go and try and find anything you possibly can that is going to be a cure. And that’s the top of your mind is, “Okay, I’m going to cure myself. I don’t know how, but there’s got to be a cure.” So you jump through a lot of hurdles. You go through a lot of websites. There’s a lot of snake oil salesman options out there on the internet. And it’s, I guess, trying to find out what is going to work, but also realistically, what’s going to be something that’s going to help you. So you’ve really got to get that out of your head that somehow you’re going to find your Lorenzo’s oil on the internet and you’re going to cure yourself.
Phil O’Neil:
But having said that, it’s very important to go and find out as much information as you possibly can and to make yourself aware of exactly what’s going on within your body so that you can therefore take the next steps. But I went… It was really interesting for me, my journey, because I’m just, I’m a disc jockey. That’s all I’ve done. I can tell you about Jimmy Barnes’s new record. That’s the extent of my skills in the outside world. But then I started reading all kinds of things about diet, about MS. I went to Norman Doidge and I read about the brain, how the brain can heal itself. It’s a fascinating book. I read about neural pathways and neuroplasticity all the way through to all kinds of different things. And I think that as long as you’re making yourself aware that the information is helping you, that it’s not snake oil-related, that the information that you’re learning and you can process it, will help you more understand exactly where you’re at. That’s the most important thing.
Phil O’Neil:
I think you can also get too much information, and you can get to a stage where five years down the track, you’ve driven your wife mad and you go, “Well, you know what? Now, there’s nothing more I can do. Now, I’m going to sit back and see what happens next.”
Rohan Greenland:
And Therese, there’s obviously your healthcare professionals are so important. But we released a report last year about the MS nurses, and the MS Nurse Report shows that as really someone to turn to help coordinate your care, the MS nurse can play a really critical role.
Dr Therese Burke:
Yeah. Absolutely, Rohan. I think, and I call MS nurses conductors of care, a little play on the nerve. But it really is true because like we said before, they can help you navigate the healthcare system. They can walk beside people, especially when they’re first diagnosed. This is when I think MS nurses are crucial. It’s not further down the line if that’s what you’re thinking. It’s right at the beginning. Because if the MS nurse can help you become better educated, give you the sources of support, help you situate hope in your situation, because everyone’s different. So as Phil would’ve remembered from the beginning, there’d be so many things going through your head. What do you think it’s going to look like for me? What will it be like in a few years time? And situating the hope appropriate to your situation is really well done by nurses, I think, because they take such a holistic view.
Dr Therese Burke:
And they can also really help particularly with drug selection, with choosing the appropriate treatment for you for your drug treatment if you’re eligible for treatment, and helping you realize what’s going to work with your lifestyle and with your beliefs. Because the ultimate thing is we want you to stay on your therapy and we want you to be able to manage side effects and look at the safety options. As Phil knows, there’s just such a barrage of information around the drugs in MS. We are very fortunate we have so many to choose from, but that can be also a curse sometimes because it’s just so much to choose from. And a nurse can really help you conceptualize that and help you become empowered and educated.
Dr Therese Burke:
And also even helping you, like Phil said in the beginning, you’ve got to go home after you receive this diagnosis and tell people that you really care about that this is what’s happened to you. And it’s that a time when you’re just, you have no understanding either and you’re just trying to come to terms with it. Often, you’re pumped through full of steroids like Phil mentioned, and particularly if it’s after a relapse, and that’s the time when you’re least well equipped to be making good decisions. So sometimes, it’s good to have someone to bounce things off. I used to sometimes rehearse with patients how they might tell someone else that they have any MS, particularly if it was someone they really cared about, or it was early in a relationship and they were really frightened of that. And just to help give them some words and some resources around doing that well-
Rohan Greenland:
That’s fine.
Dr Therese Burke:
… and at a pace that suited them.
Phil O’Neil:
And can I-
Rohan Greenland:
Okay. Where… Oh, sorry. Phil.
Phil O’Neil:
Yeah. I was going to say, Rohan, and sorry. And just to answer your question about my reliance on the MS nurse, it was absolutely, it’s great to have that person that you can speak to as well. And because you can’t get access to your neurologist, but you need to know what’s going on. I noticed that Therese, you probably have had so many patients call you and going, “Look, I’m sorry to be a pest.” But because I realized that I could ring them, and I thought, every time I rang I thought, “Oh, I’m going to be a real nuisances.” But the MS nurse always had time to speak to me and to talk me through the process and to allay any fears that I had, so that’s terrific to have that friend there too.
Rohan Greenland:
And Phil, when we… Oh, sorry. Therese, you’re going to add another point there?
Dr Therese Burke:
I’m just going to add in there too that I think that’s really important at the beginning, Phil. Because if they can help you understand what’s going on and help you detect a new relapse or… Because we send you away saying, “You may have a relapse. Again, this is what you should look for. We can’t tell you where or when or what it might look like, but just be alert for it.” Oh my God, how are you going to do that? And sometimes just to have someone to ring just quickly and say, “Look, what do you think?” You can run it by them. That also teaches you to be able to manage it yourself in the future because next time you’ll be thinking, “Ah. Now, what did she say about stop and think about what’s going on?”
Rohan Greenland:
And Therese, where would people go for information? Obviously our own website, MS Australia, but also our member organizations, MS Plus, MS WA, MS Queensland, MS South Australia/Northern Territory have wonderful resources that can assist people living with MS or newly diagnosed with MS, but also their families, friends, and carers, and even employers too, to understand the disease better. But what other sources of information are available?
Dr Therese Burke:
Well, a lot of the MS clinics, the bigger MS clinics will have dedicated education programs and things like that. But as you mentioned, our member organizations for people that don’t attend a neurologist or a clinic with an MS nurse, our member organizations have nursing staff so that you can talk to them if you don’t have your own MS nurse about issues that you’re dealing with. There’s also some of our affiliated MS organizations overseas, like in the UK. And the MS also have very good information packs and resources that are available to help people. But there’s plenty on our website as well to point you in the right direction.
Rohan Greenland:
And Phil too, when you were first diagnosed, obviously you had… Everyone’s MS journey is different, but you had a range of symptoms. But today, a few years down the track, what are your main challenges in terms of symptoms and how are you managing those?
Phil O’Neil:
Well, it’s funny, and this leads back to something Therese said a moment ago as well. When you’ve been advised after you’ve got the initial diagnosis that you may get a relapse, you start to think that everything is MS-related. And that’s one of the most important things to remember, is it’s not always MS and chances are it probably isn’t an MS-related thing. But for the first five years, that’s all you think about, is any simple little thing that’s happened to you, you think to yourself, “Well, this must be MS-related.”
Phil O’Neil:
So once you get on top of that, it’s really a case of keeping yourself as fine-tuned as you possibly can, which was my health and diet. I’d gone to the gym a lot beforehand, but my diet was pretty terrible. And I just did a complete overhaul of my life, complete overhaul, trying to keep my food as natural and as whole as possible. I keep my meditation up, my stress levels down. I go to the gym five times a week. So it really is so important that once you accept that there’s nothing that you can do about this, that it’s going to take its natural course, try and make sure that you can keep on top of it as much as you can so you’re giving yourself the helping hand that you need, because that’s so important. It’s the obvious things like food, diet, and exercise. But they are so important to somebody with MS, to keep yourself as active and as healthy as you possibly can and give yourself a really good fighting chance.
Rohan Greenland:
And Therese, we know that when people are living with MS, these lifestyle factors are really critical in terms of improving quality of life. There’s a range of advice I think we have on our website. Would you like to talk about that?
Dr Therese Burke:
Yeah. So as Phil said, it’s about also regaining some control over your life. And these are things that you can control. You can’t control what’s happening with the MS per se, but you can control what you eat, how you exercise, and what you do about your lifestyle. And our adaptable and modifiable lifestyle guide which is on our website gives really great evidence behind all of this. So things like Phil’s alluded to have eating cleanly, eating well, making good choices, maintaining a stable and good weight for you, exercising regularly, and doing something that you love. If it’s going to be a punish, you’re not going to keep it up long term. So try and explore things that really appeal to you and that you enjoy doing within your capabilities. Getting enough sleep, managing your stress and mental health, all of those things, stopping smoking, are really important.
Dr Therese Burke:
And they’re really mainstream lifestyle factors, but there’s some, also a little left field that I also think are valuable, things like harnessing a sense of humor. Now, there’s been some evidence that in neurological diseases this can be really helpful. So I’d like to hear if Phil had a story on that. But just things like that, getting really good people around you, people that are good for you, and not just in socially in your relationships and in friendships, but also with getting a really good team around you of healthcare practitioners that work for you. So that might be a dietician, it might be a life coach, it might be a psychologist, but get the very best that you can and ones that work for you.
Dr Therese Burke:
I also think that different people have different values within faith and religion, spirituality, but most people have something in that realm that really helps them and speaks to them. And so I think finding that too can really help you regain that, I used to call it purposeful positivity. It’s that feeling of waking up in the morning and thinking about, “Okay, what can I do to really change this and to maintain optimism and be positive?” And it’s doing that with purpose. And they’re all the things that Phil mentioned that he did in the early days and continues to do.
Rohan Greenland:
And Phil, obviously we don’t recommend any particular diet because the evidence isn’t there, but generally MS societies say the Mediterranean diet appears to be one that has benefits in terms of being an anti-inflammatory diet and full of legumes and nuts and seeds and fruit and very light on processed foods. Have you found a dietary eating pattern that suits you?
Phil O’Neil:
Well, probably everything that I wasn’t doing before because everything that was bad for you, I used to have. But it’s all common sense, isn’t it really? Somebody said to me, if it’s got a label on it and a whole bunch of numbers on it, then it obviously can’t be that good for you. And going back to what Therese said a moment ago as well about just keeping a really positive message, you’ll run into a lot of people who will say to you, “Well, that’s not going to help,” or, “Your situation’s not going to get any better.” That has no place in my life. I can’t and won’t adopt that philosophy or that way of thinking because that’s not going to help me. What’s going to help me is to remain as positive as I possibly can.
Phil O’Neil:
Because what other option have you got? You can’t lie down and go, “Well, I’ve got MS.” And I have this saying, that I have MS but MS doesn’t have me. And that’s exactly how I feel about that. I’m not going to allow this thing to dictate my life. I’m going to take control of it as best I possibly can and in the most positive way. And once you start thinking about the positive direction that you can take with this and you get rid of the naysayers and all the negativity in your life, then that will make a big difference as well.
Phil O’Neil:
And I’ve noticed it really does. It’s just with spirituality and things like that. It’s really, really important to keep that positive message in your life every day. But the diet, for me, again, it’s common sense, isn’t it really? If you’re eating processed food, it’s not going to do you any good. And I know people that won’t give up smoking and who have MS, and they said, “Well, why should I?” And I said, “Well, probably not going to do you that much good.” There’s so much common sense involved in this.
Rohan Greenland:
Well, I even got a running shirt on preparing for The May 50K, a big fundraising for MS research event every year. And I’ve bought a new running shirt and it’s got “Movement is medicine” on the back of it which I love that slogan. Therese, also about the importance of adherence to medications and working closely with your healthcare practitioners to ensure you’re getting the medication that’s going to work best for you, what comments do you have about that?
Dr Therese Burke:
It’s so important, Rohan. Australia’s one of the only countries in the world that has open access to a lot of these disease-modifying therapies as a first line, meaning you can start them from as soon as possible after diagnosis for people with relapsing forms of MS. There’s not many countries in the world that have that, and most of our drugs are subsidized by the government at a very cheap cost compared to the thousands and thousands of dollars that they actually do cost. So we’re in this incredible situation and we want to make the most of it. But no drug’s going to work if you don’t take it properly and you don’t take it regularly. That’s where side effect management and managing the safety, the long-term safety issues with some of the drugs is really important, to be honest, to report side effects early and see how they can be managed. And that can be done with your MS nurse or neurologist. And to report what happens so that there might be a really easy tweak that can be made just to make it more comfortable for you.
Dr Therese Burke:
Nurses are also really good at helping with the logistics of starting some of the drugs. Some of the medications need infusions, for example, and they can help you get set up and get you into a system that helps you manage that. But like I said, if it’s not taken properly, it’s not going to work at all. So we want to do everything we can to enhance that.
Rohan Greenland:
No, thank you very much for that too. Now, Phil, there’s a question I’m really keen to ask you. What would Phil of today tell Phil of 2016 when he first was diagnosed? What would you tell yourself? What messages would you have for yourself when you were diagnosed in 2016? Now, you’ve in the few years on have got some hindsight and advice to give.
Phil O’Neil:
I think the first thing I’d say is don’t be scared. The very first thing, because I was petrified. And don’t preempt what you think is going to happen because you don’t know what’s going to happen. It could go one way or it could go the other way. You just don’t know. So to start thinking the absolute worst is the worst thing you can do because it may not happen. And that was a message I wish I’d known back then. Here I am now six years down the track and feeling a lot healthier than I was six years ago, more active and more aware. So I think make yourself really aware, that would be my message back then, would be don’t sit around and wait for something to happen. Try and change the future as best you possibly can.
Rohan Greenland:
And what are the symptoms you are really managing on a day-to-day basis?
Phil O’Neil:
It’s the joy of MS, isn’t it?
Rohan Greenland:
Yes.
Phil O’Neil:
What time is it?
Rohan Greenland:
The unpredictability of it, yes.
Phil O’Neil:
And that’s it. That’s with MS. You could get anything. Again, don’t automatically assume that what you’ve got is MS because it may not be. You might just have a calf pain or a hamstring strain or something like that, or it could be in that way related. It’s funny because I’ve just had COVID and somebody said to me, “Oh, something you’re going to get with COVID is all these unrelated pains.” And I went, “Well, that’s just Tuesday for me.” Then they’re, “Really?” Because that’s with a lot of it, it’s just unrelated pains, shooting pains through the head through to a numbness of the foot, numbness of the groin. That’s always a fun one. But these things pass. I haven’t had a relapse, thank God. So it’s the surprise of MS because you just don’t know what’s going to happen next. And half the time, maybe nothing will happen.
Rohan Greenland:
Nd Therese too, as someone who’s looked after many, many people with MS, how do you find people with this unpredictable disease? And how have you helped them as an MS nurse?
Dr Therese Burke:
I think that’s the hardest thing, Rohan, is living with the unpredictability and the uncertainty because there’s no certain answers about this, as Phil has said. So I think learning. I usually advise people at the beginning that, “You can do this. A lot of people have been through it, and you start to share stories and ask your health practitioner for stories that can be helpful to you.” Just knowing that someone’s been there before and come through it, like Phil is doing today, can be incredibly helpful for people. And I think just telling people as well that time can be their friend. So those first few months can be really daunting, but over time, you’ll start to develop your own skills. You’ll get to know your own body with MS, and you’ll get some self knowledge, and you’ll develop knowledge about treatments and about the disease itself. And then you’ll start to share that with other people too, and you’ll start to gain confidence over time.
Dr Therese Burke:
But that’s not going to happen overnight. So just go easy on yourself because you’ve really got to navigate this course. And once you learn to do that, actually some really wonderful things can come in, can’t they, Phil?
Phil O’Neil:
Mm-hmm.
Dr Therese Burke:
You’ve probably got some wonderful stories as well of things that might never have happened if you hadn’t been through this. And I think people who really concentrate on that positive side of things really harness that, and they use it to their favor to really get through this.
Dr Therese Burke:
The other thing, the thing I’ll leave you with, Rohan, is just to really put your hand up if you’re struggling and let your healthcare practitioners know, because so many of these symptoms are invisible. Sometimes if you don’t point them out, they may not realize. And so always ask for help. They’ve heard these things from numb groins to tingling fingers all before. And sometimes, there’s some really easy things that can be done to help you manage that better. And if that greatly improves your quality of life, what a wonderful thing to do. So don’t be frightened to speak up and ask for help.
Rohan Greenland:
No, thanks very much, Therese. And Phil, we are so happy to have you join us. And I guess this is something that led you to us, is your MS. And it’s just wonderful to have you help us and support us to help get the message out and help educate people living with MS, their family, friends, and carers, share their stories, help employers understand the impact it might have on employees, and understand that in fact, they can be wonderful contributors despite the fact they have some challenges with MS. One last question for you. It’s a wonderful, wonderful podcast when you spoke publicly about your MS on the Jess Rowe podcast in September last year. And what motivated you to reach out to us and to, I guess, take that next steps in taking a wider journey to talk to people about MS?
Phil O’Neil:
Well, and it’s going back to what Therese said again about how your life can just change so much as a result of this. And I’ve probably ironed out and saved myself an extra 20 years of life because of the MS diagnosis and because of the way I changed my lifestyle, my outlook, my diet. All of those sorts of things have in a lot of ways have helped me. I wouldn’t call it a blessing to have had MS or to be diagnosed with it, but it certainly has helped me in a lot of other areas of my life where I’m a lot healthier now than I ever was, which I wouldn’t have done if I hadn’t got that kickstart and that awakening jolt.
Phil O’Neil:
When I went to Jess, because I was very, very worried about talking about it because again, I didn’t want people to go, “Well, that’s Phil. He has MS,” and that would therefore be the way you would identify me. But I did notice when I first was diagnosed, I went on to see who else had it and to see what sort of celebrities had it so I could see how they were going. And more often than not, the people that you find out that have MS are doing okay with it. And you think to yourself, “Well, if they’re doing okay, well then there’s maybe a chance I could do okay as well.”
Phil O’Neil:
So for me to be able to have a platform where I could come out using the job that I’ve got and to say to people, “Look, I’m doing okay. You could be doing okay as well. Don’t be scared. You’re not alone in this,” then at least it’s given me something that I can give back and a positive message that I can pass onto people through the fact that this is what I do for a living. I talk about things. So in that respect, that’s why I came out with Jess and I said, “I’d like to talk about it,” because I thought, “Well, maybe I can help somebody else out as well not to be as afraid, and also to know that things could be all right and probably will be all right.”
Rohan Greenland:
That’s fantastic message and a great, great point, I think, to wrap up this, our second Raw Nerve podcast. So to Therese and Phil, thank you so much. And thank you, Phil, for joining me and being a driving force between the future of The Raw Nerve as we go forward. Thank you both.
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.
