S2E25 A personal experience with MS – In conversation with BBC Radio Presenter Erika North

Geoff Allix  00:00

Hi everyone, Geoff Allix here, your host of the Living Well with MS podcast. To all our listeners. I hope you and your families are staying safe and healthy during this COVID 19 crisis. While social distancing and other restrictions may seem like a drag, in the long run it will prove critical to stemming the tide of this epidemic and returning to a sense of normality. I have faith we will come out of this stronger, smarter and a bit more enlightened as a result. In the meantime, we at Overcoming MS and the whole team behind this podcast are here for you, to keep you informed and help you keep on track with your personal journey to a healthier you. Now on with the show. Joining me for this episode is Erika North. Erika started her career in the music industry at the tender age of 16. Working for a PR company representing the Rolling Stones, U2, Prince, the Spice Girls and many more. One of her earliest highlights was when Cher sent her flowers to thank her for finding her favorite brand mineral water when she ran out in the middle of the night. She fell into the world of radio by complete accident in the mid ’90s, co hosting a show on London’s Heart 106.2, a job she performed happily for 14 years. Since then she has presented national breakfast shows, broadcast at the top of Sydney Harbour Bridge during the 2000 Olympics opening ceremony, and can now be heard on the airwaves of BBC Radio Kent. Erika was diagnosed with MS in 2008 and is now happy to put a spotlight on the trials and tribulations her condition brings with a trademark sense of humor her listeners will be very familiar with. So Erika, welcome to the OMS Living Well with MS podcast.

 

Erika North  01:40

Thank you, Geoff.

 

Geoff Allix  01:42

Just to start off with, could you tell us a bit about yourself, for the global audience. Just about your life, family, where you live and so on.

 

Erika North  01:51

Certainly, I’ve worked in radio in the United Kingdom now for more than half my life. Certainly over 25 years and I’m really just in my 40s. But MS has also been part of my world for the past 10 years, but my career is something I’ve always been exceptionally proud of. I used to be on the London breakfast shows with radio luminaries, I think it’s safe to say such as Tony Blackburn, which many Brits will know he was the king of the jungle in the first series of “I’m a Celebrity” for younger members of the audience. I’ve also worked with people like Rick Dees producers, if you’re in the United States, you know Rick Dees, who is very much Tony Blackburn’s AmErikan equivalent. He used to work with us on on the Heart 106.2 breakfast show that I worked on for 11 years in the UK. I’ve also worked with Jonathan Coleman—Jono— who Aussies will know and be very familiar with. And I’ve had an absolutely great time doing something I love, paying the mortgage, for, as I say, 25 plus years. Although that makes me feel very old to say that, I also look back with a great big smile, because I’ve been very lucky to do some brilliant things in that period. And I love my job. Well, I’ll go on doing it for as long as they let me and currently I’m working on the BBC, in fact, on BBC Radio, Kent.

 

Geoff Allix  03:10

So you’ve also got MS. You mentioned. So when were you diagnosed with MS? Or when can you tell us a bit about your own MS journey when you started to have symptoms and diagnosis and so on?

 

Erika North  03:24

Well, to be honest, it was when I was working on breakfast radio, which I have done for a large chunk of my career and getting up in the middle of the night. So when the symptoms started, and it was really fatigue that kicked in first, I’d make an appointment to go to the doctor, I’d go in and see him, I’d explain what was going wrong. And he’d say, are you still getting up in the middle of the night? And I’d go yep. And he’d say, well, why don’t you go and get a job that starts at eight o’clock in the morning, and then come back and tell me you’re feeling tired. And to be honest, I genuinely think that my work position actually masked the symptoms of MS or certainly gave the doctors permission to put it to one side and ignore them. For a long, long time. I’m talking about 15 -16 years and gave them permission to not really explore any further, because of the fact, they looked at the fact I did breakfast radio, looked at the time I got up and basically went, there you go, that’s what it is, we’ve diagnosed it and no problem here. So it’s one of those things in one way it was good because it meant I wasn’t scared by what was going on in my body. And I knew my body was behaving rather strangely. It wasn’t like other people my age. And I certainly knew that I was rather clumsier than other people. And I’d get up to go and pick a piece of paper out of the photocopier and fall over and people would laugh and say, well there she goes, grace of a gazelle, Erika North ladies and gentlemen, and it was all a bit of a joke. I’ve worked on radio, I was used to lots of banter in the studio. And that became part of my on air character, I suppose. I certainly wasn’t fearful that it was a sign of something more serious because if the doctors didn’t think it was more serious, how could I know it was something more serious? Even so much to the point that when I was actually diagnosed, I was having dizzy spells, because a lot of my demyelination is on my optic nerve. And when I finally went for more research, the gaps between the dizzy spells were getting shorter and shorter. And so I did get it investigated. And the neurologist did an MRI and he said to me well I think it could be MS. I laughed at him and said, well, it’s definitely not that, I had a friend diagnosed with MS 20 years ago, and I know a lot about it, I probably laughed in a very condescending way to him unintentionally, and said, I’ve read every book there is on MS, I’m sure it’s not that. And then, of course, went back for the results three weeks later. And to be honest, no one was more gobsmacked than me. When he said, this is multiple sclerosis we’re looking at, in fact, the friend that I was working with at the time, this was before I worked in radio, he ran a music PR company. And together we used to manage the careers of the Rolling Stones, and U2. So this is a man who has traveled the world and done all sorts of amazing things. And as I say, I only found out about his MS because I was the girl who was going to the meetings with him, with those big celebrities, with those big stars, at huge events, when all of a sudden he couldn’t drive his car out of the car park and he had to throw the keys to me. And obviously, in those journeys, and in those years I worked for him, it came that it was MS that was causing him to not be able to do that. So out of a love of him at the time, I did a lot of research about the illness. And little thinking that it was going to be something that was going to bite me on the bottom as well. But that’s life, I think the things that you worry are going to happen are the things that don’t happen, and the things that you don’t think are going to happen are the things that come along and blindside you. And it was a bit like that for me with the MS. Although by the time I was diagnosed, to be honest, I was so glad to be able to put a name to the dizzy spells and put a name to the fatigue and be able to turn around and say, see, I knew something was wrong. I knew there was something wrong with my body. And all these medical people I’d seen over the years had said, oh no, it’s the time you get up in the morning. I had one doctor say it was because I’d washed my hair in the shower and I was getting water in my ears. You know all these crazy things, who told me to wear cotton wool balls in my ears every time I went swimming, so I’d go on holidays with my girlfriends at that age, with bags and bags of cotton wool balls, and they’d all take pictures of me swimming in the pool with these cotton wool balls sticking out of my ears, which still exist on fridges around the country. They delight in reminding me of that.

 

Geoff Allix  07:35

That’s the first time that one’s come up. But there’s been, I think it’s quite common to have that initial skepticism though maybe not the right word. But doctors saying that they think it could be something else. And I’m sure that there are many people who don’t have MS who don’t have anything major wrong with them. And actually, there is a simple explanation. And so for all of us it’s like well, actually, those things early on were something more major.

 

Erika North  08:05

It all falls into place doesn’t it, when you know, but until you know, there was no way. The jigsaw puzzles weren’t big enough to put together and go, oh, this is multiple sclerosis. You know, when my neurologist did diagnose me, he said, how’s your bike riding? And I said, I’ve never been able to ride a bike. And you know, my parents bought me every, My Little Pony, Barbie bike that was you know, popular at the time, whatever was age appropriate for me. And I could never stay on it for more than two feet before I fell off. And my father, you know, running along behind and as soon as he’d let go at the back of the bicycle, as many dads do, the bicycle would fall over. Now, of course, there are lots of people who can’t ride a bicycle, who don’t have MS, I don’t want to worry people. But at the same time, of course, balance is integral. And that’s why I went on to spend the next 40 years of my life 20 years of my life, whatever it was, in my 40s now, falling off things, falling over no matter what it was, I’d have a scratch or a scrape. You know, and you know, when you look at it all now with hindsight, I go, gosh, why didn’t I notice it sooner? But as we know, there are so many variations of MS and so many different things and too many different things that present before diagnosis. And after. It’s one of those things, you’ve just got to laugh and smile and go, “oh well, the signs were there.” And luckily, by the time I got in front of a neurologist who did know what he was looking at and what to look for. Obviously, you know, the jigsaw pieces made more sense to him than they had to me for all those years. But certainly when he looked at my MRI, you know, I think he said a positive diagnosis for something like five plus lesions. And I had something like thought 30 odd in my brain and he said you’re very lucky to have carried on at the level you have for so long without support and help because he said, looking at this, this is quite an obvious indicator, certainly a big indicator of multiple sclerosis or something neurological being wrong. But I was very lucky before diagnosis and lucky after that I am able to carry on at the level I am,  which I’m immensely grateful for and thank, thank the heavens every day, every week that goes by that I’m in the situation I’m in.

 

Geoff Allix  10:09

And so you work in a very public role, but bringing up to your employers, because that must have been worrying, because, I think it’s worrying for everyone. If you’re with a job, you think, what should I tell my employers? How will they take it? How will it affect my career in the future? So how did you come about deciding to tell your employers? How did it go basically, telling your employers about it?

 

Erika North  10:42

I’ll be honest Geoff, I didn’t have the best experience, I won’t say who I was working for at the time. But I did keep it secret for a good six, seven years when I was first diagnosed, because I was freelance. That’s what everybody is in my industry, predominantly, you know, and I was concerned that you know, someone not knowing about MS and not knowing as much about it as I did at that time, might look at that on my CV and think, oh, hang on a second, is she going to be someone we have to worry about, is that someone who’s going to need a lot of time off work, I’m proud to say I literally hadn’t taken a day or a minute off work for the previous 11 years, because of my MS or because of anything else. But I hoped that an employer would look at that and say, wow, this is a girl who likes to work hard. And she’d be a great employee. But of course you can’t trust people are always going to look at that same set of information and come up with those decisions in the way you’d like them to. So purely because I wanted to keep paying my mortgage, I’ll be honest, I did keep it to myself for as I say, a good six, seven years. When I did come out, they were very nice about it. And they said, oh, why didn’t you tell us, you shouldn’t have worried at all, that doesn’t make any difference. And a week later, I lost the job I’ve been doing, as I say, without taking a day off work. I’ve been doing it for many, many years. And they said, it was the day before Christmas Eve and they said don’t bother coming back in the new year. I can’t say that was an easy time in my life. And I genuinely thought I’d had wonderful people around me who were supportive. And you know, my employers were very much on board with helping me through it, and then the rug was pulled, but I’m still in touch with some people at that company. And I do believe I’m told that things have changed since then, because that was around 2010, I suppose that those things happened. And they were still very much allowed to happen at some point, with one manager even saying, you know, at one point when I was diagnosed, this is another company. But before I was diagnosed, I’d had the MRI. And because the MRI came about because I’d collapsed at a tube station, underground station on my way into work in central London. And the ambulance took me to a hospital to get investigated. And that MRI meant, I wasn’t late, rather than being an hour early for my shift, I only turned up half an hour before my shift. And they use that as a bit of a reason that, oh, you’re not showing the dedication that you once did. And of course, when it turned out that the MRI had resulted in the positive MS diagnosis, I’d spoken to a friend of mine at the company and said, well, this is actually what’s going on in my body. And he reflected it back to the manager and said, “I spoke to Erika today. And you won’t believe it. It turned out that when she needed that MRI scan, and when she was taken to hospital in an ambulance, it was because she had multiple sclerosis, and she has multiple sclerosis.” And his quote was, “gosh, I’m lucky we got rid of her when we did then, because if we hadn’t and we’d have known about that, we would have had to have paid her a fortune.” Which obviously broke my heart on many different levels. Having worked at the company for such a long period. But as I say at the time, these things were very much allowed to get by. And it did and it’s one of those things you’ve just got to chalk down to experience and go, do you know what, I’m really glad the world has changed as dramatically as it has in the past 20 years, because hopefully things like that wouldn’t happen anymore, wouldn’t be allowed to happen anymore. And as I say, I believe from the people I’m still in touch with in those businesses that that’s not the case anymore. And that’s good.

 

Geoff Allix  14:11

And subsequently that your employers now, that’s obviously completely open now about your diagnosis. And that’s not a problem with work.

 

Erika North  14:22

Do you know what, I genuinely made a conscious effort because when I was diagnosed, there weren’t many examples in the press. I hadn’t heard of Overcoming MS. Obviously, organizations like yourselves, spreading the word. And hopefully through something like this podcast, there weren’t many positive examples of people living with multiple sclerosis and just getting on with it in the best way they could. When I was diagnosed. It was very much doom and gloom and I remember calling up a charity on the day that I’d had the results from the MRI. And I was very emotional. I was very distressed because I said it was the first time anyone had mentioned the letters MS to me. And I spoke to a lady on the helpline. And I said, I’m a bit emotional because I had this MRI and they think it could be MS. And she said to me, Oh, don’t worry dear, not everyone ends up in a wheelchair these days. And of course, that was the last thing I needed to hear at that moment. And I put the phone down and burst into even more tears. And it took a while to pick myself up from that. Having said that, I then went on quite quickly to educate myself about MS and what was in my control. And once I was able to do, and felt so empowered by that I very quickly moved away from that mindset of, you know, that potential negativity, not that being in a wheelchair doesn’t need to be a negative thing in this day and age. As I say, there are so many differences even in that short period of time of how the world has changed and is trying to be so much more inclusive. And, you know, continuing on a day to day, week to week basis of making these things no more the things that might at one point have closed your world slightly. It doesn’t have to be that case anymore. We can work from home, there are amazing advances in computers, technology, the fact that you and I are having this conversation, Geoff right now over the miracle of Zoom, you know, that wasn’t something that I’d even heard of, or existed when I was diagnosed, I’m sure the person who invented it probably wasn’t even born.

 

Geoff Allix  16:21

I think most people hadn’t heard of Zoom before Coronavirus, to be honest.

 

Erika North  16:25

Let’s face it. Do you know what, all these things make it so much easier for people to carry on, in ways that we couldn’t have imagined 20 years ago, let alone 40 or 50 years ago. You know, so isn’t it brilliant to be born now? Aren’t we lucky that there are all the research that’s going on, all the medications that are available. Everything, the fact that the world is so much more open to people with all sorts of conditions and disabilities, disadvantages don’t need to hold us back in the way it might have done for my parents’ generation or my grandparents’. And that is something again, we are exceedingly lucky. And I think we should all, you know, remind ourselves of when we’re able because quite frankly, it’s a great time to be alive. And it’s a great time to be fighting MS.

 

Geoff Allix  17:14

And so you told your employers, but then you have a very public role. So was it soon after or a long time after that you actually told the listeners as well, of your condition.

 

Erika North  17:29

I’ll be honest, I can’t even remember the first time I mentioned my MS on air, I certainly do it quite a lot now. If we have people call up. You know, we have some regular callers on the show I work on, some first time callers obviously, if someone’s not aware that I have MS, I’m more than happy, if someone says “oh I’ve been diagnosed with multiple sclerosis,” I’m more than happy to jump in and say, “oh, me too.” Because I genuinely think people become fearful not only people who have it, that the people around them become fearful of these things when they’re not talked about. And that’s one thing. If there’s anything anyone can say about me, whether you love it or hate it on radio, or in all the jobs I’ve done, I’ve done quite a bit for television as well , for the BBC. Things are only feared by people be that a color or a condition or a disability or a disadvantage, when people don’t talk about it. And as soon as you start having that conversation, you realize that we’re all the same and we’re all just as fearful as the next person, of cancer or of our child being ill, or a grandchild, heaven forbid, you know there are no new things in the world. Sadly, that’s true. Whether you were born 100 years ago, 200 years ago, these things only, I believe were fearful and things that people had a stigma attached to. Because people didn’t have the media now or Facebook or whatever it may be. That made the world a bit smaller and made those conversations audible to people, made people hear my voice now at whatever point you are on your MS journey. I’d like to think someone hears it and goes, Do you know what? She’s right. Let’s stay positive about this. We’re lucky, although the drugs can’t do everything yet, and hopefully there will be a complete cure one day, and hopefully it will be in my lifetime. But if it isn’t, do you know what we are exceptionally lucky that there are so many things in the pipeline. So many things available. Now. My Tysabri that I’m on, I believe, has taken away those relapses for me. I’ve been like for 11 years now. I went on it quite soon after it was approved by NICE. I started at Charing Cross Hospital under Dr. Malik, who was a wonderful doctor, who I miss seeing as regularly as I used to do when I lived in London. I’ve now moved up to Kent, I have more brilliant neurologists who see me now. And, do you know what, it’s the best time, although it’s not great to have that MS diagnosis. I’m not saying it’s something that someone would necessarily celebrate. But at the same time, everyone has something to deal with in life. And now is a great time to have a condition like MS because there are so many different things that can help us. They know so much more about it, there is so much more research going on, I genuinely hope from the bottom of my heart that COVID doesn’t hold up those investigations for any longer than it has to be. Because obviously COVID has put a great big kibosh on lots of things happening in the world. And you know, the medical world has suffered more than many aspects of our lives. But you know, I have a lot to feel positive for, there are so many great things happening. And I would like to think now, if someone was diagnosed today, when it happened to me 20 years ago, there wasn’t so much positivity being spoken about. But now there is. So let’s talk about it. And let’s remind people, MS, yes, it will change your life, but it will also bring so many positives into your life. I’ve made some great friends. I think my appreciation of life is much broader, because I don’t, I don’t sweat as many small things. As we’re all you know, it’s a curse that happens to a lot of us in this day and age. And I used to worry about all sorts of things that now I look at and go, why did I waste so much time thinking about that, when actually, there are so many bigger things to look at in life and so many bigger things to be very appreciative for and I hope I put that into practice every day.

 

Geoff Allix  21:22

And I think, you were mentioning the impression people have when they’re told that they have MS. That sort of mindset of that fear. My father had MS. But he wasn’t in a wheelchair. And I thought and this is in sort of ’80s-’90s, I thought he was a complete outlier. I thought it was that. You know, he didn’t have normal MS if you’d like, because I knew another friend whose father had MS and who was in a wheelchair. And I kind of took that in my mind that was normal. MS meant you were in a wheelchair. And even having a father with MS, I thought that was a freak occurrence that he wasn’t in a wheelchair. And that was a public impression. And there were no celebrities. There was no one famous at all that had MS as far as I was aware. And I think now you’re starting to see that actually, yes, there are some people in wheelchairs, but there’s a whole broad spectrum. Because there’s also people I now know who are running marathons. There was someone broke the record, a female broke the record for a marathon in the Antarctic, there was some crazy race in the Antarctic, which is crazy by anyone’s standards anyway. But the woman who won it had MS. And it was like, okay, so there’s these extraordinary things so that I mean, that’s extreme, another end but the fact that now at least there are people like yourself. There’s celebrities like Selma Blair, and there’s Mitt Romney’s wife has MS. And there’s a few other people. And you’re thinking actually, it does take away that sort of fear, I think, because if you just only show people the extreme cases, then that’s what’s in their head, and they will be terrified.

 

Erika North  23:29

Absolutely. And as I say, I think that’s genuine. A lot of people moan about all computers, kids spend too much time on their laptops, on their iPhones and things like that. But genuinely, they’re also the tools for us to say, You know what, this doesn’t have to be a scary diagnosis. And much as, yes, you’ll find those stories on the Internet, there’s always going to be the person’s worst case scenario. But now, in this day and age, which this podcast is a part of saying, “do you know what, there are also millions of people around the world, who are able to live with MS and adapt their lives in the smallest way.” And actually are carrying on as normal in their families as mums and dads and, and sons and daughters. And actually, you know, MS and lots of conditions because of where we are in the world in 2020 is very different to the world when I was diagnosed in and I hope in the next 20 years, it comes on in leaps and bounds in the same way. Because that could mean we have a cure to MS. So maybe one day you and I will be talking about that. I’d love to think that we will be, but as I say that’s one thing where I think computers and all this technology, really help people spread the word that, do you know what, yes, it’s okay. It’s a condition that you maybe wouldn’t have chosen. And I know there are many people who are diagnosed at a different point on their disease path than I was and I was very lucky that you know, the drug was there to hopefully keep me at this level where I can function very normally for a long, long period of time and I will always be begging the doctors to keep me, if not medicated on this, medicated on the next best thing, to try and keep me at this level and keep me as able to carry on performing and just functioning at the level I do for as long as I possibly can, isn’t it great, we have those options now. And that’s what people need to be aware of. You know, it’s not the world it was 30-40 years ago, thank goodness, certainly into terms of illness and diseases like MS, or whatever you want to call it, you know, it’s, I don’t like to think of it as a disease, because then I think you get into that mindset. And that’s not the case, it doesn’t need to be the case, this is very livable with, there are lots of options open to you that haven’t been previously. And you know, as I say, OMS, I think is a wonderful, wonderful way of saying to people you have the power, you have the control, this is in the palm of your hands, this isn’t something that has to be prohibitively expensive, it’s not something that is going to have massive side effects. This is something you can do, you can take control of. And you can genuinely make a difference in your day to day life living with MS. And isn’t that at the end of the day, what we’re all trying to achieve?

 

Geoff Allix  26:09

And so you mentioned Overcoming MS there. So could you tell us a bit about adopting Overcoming MS, how you discovered the program and how you found adapting your lifestyle to Overcoming MS.

 

Erika North  26:25

Well, a lot of the mindset of Overcoming MS and the positivity that I think comes out of every page in the book, and you have to, if you don’t have a copy of the book yet, well, why not quite frankly, you need to be writing to them. And getting that done, sending them an email and asking for a copy. Because it really is wonderful. And a real handbook, I suppose a guidebook to carry with you every day on your MS journey, because I think it’s looking at your diet, it’s looking at your mindset, it’s looking at your attitude to life and saying, do you know what, let’s take the power of the MS away. By thinking about this logically, and treating our bodies in the way your body is asking to be treated, I genuinely think it’s something that can benefit people who haven’t even been diagnosed, because it’s about boiling down your diet to say, is this thing that’s going to go into my mouth, is this going to be the best way for me to, you know, put my body in the best state to fight whatever is thrown at it? And I genuinely think Overcoming MS are on to something, I really do. And I think that, you know, whenever I meet up with any of, either other people following OMS, or some of the staff there, I was very fortunate to be one of my big listeners when I was on a breakfast show radio station in London actually worked at OMS. And he got in touch with me and said, oh, here’s the book, have a read, see what you think not long after I was diagnosed. And I was exceptionally lucky. His name was Gary and Gary, I’m so appreciative to what you did introducing yourself to me and the way you did it. Because I just, as I say, I read this and I thought I knew I was onto something thinking that diet was going to be important. I knew that mental attitude and that positivity could only help me through. But seeing it in writing, as we all know, see some writing does make it more real for your brain to always gives it permission to believe it. Did that make sense? You know, when you see it written down you go, there you go. There it is. And I say I genuinely urge anyone who hasn’t read it. Or if you have a maybe a partner who has MS. And it’s not actually you or a family member, a mom or a dad or a son or a daughter, get yourself a copy because it will only help you understanding and themselves as well. Because I think even down to basics, like a lot of the language we speak in our heads about the condition and the attitude that we have towards it. I genuinely think OMS, and the positivity oozes out of the pages. And I guarantee you it will cheer you up on many levels.

 

Geoff Allix  28:48

And to give it a plug it’s, it’s freely available in most countries. Some countries as a print book version and other countries there’s an ebook, but it’s yes, it’s widely available. It’s not, this is not something with selling a product, it’s mostly sent out for free. So if you go onto the OMS website.

 

Erika North  29:11

I’m very lucky. I’ve had a couple of copies sent to me not because I’ve lost them, but because of friends who have actually had an MS diagnosis. And I’ve tried to impart everything from myself. And I said, do you know what, the book will tell you so much more than I can, given them the book and then had to call up Gary and the team at Overcoming MS and saying, can I have another copy please? I’ve given mine away to someone who’s just been diagnosed. So it’s spreading the word and it’s just getting that network together of people who are similarly minded, similar thinking, you know, there may be people who have an MS diagnosis and say, well, this is my permission to give up on life and I’m going to introvert into myself and not going to want to open my eyes and see how I can change things. In fact, I do have rather frustratingly, a friend of mine who has been diagnosed with MS longer than I have, who refuses to take any drugs until there’s a complete cure, refuses to follow Overcoming MS, or learn about it. And his attitude is very much, until there’s something that completely gets rid of it, I don’t want to know, because it’s not a cure. Now he’s absolutely committed to that mindset. That’s absolutely fine. I’m not questioning that. But I personally think I benefit, and I’m able to hold on to more of my capabilities. And certainly that positive mental attitude is so crucial. And I think they’re offering your hand and saying this, this can help. No, there’s no guarantees with anything in life. But this is something we think will help. We’ve thought a lot about it. We’ve spoken to a lot of people with MS who have tried it. And if there’s 1 chance in 100, you might be one of the lucky ones. Why wouldn’t you, as you say, it’s completely free? And it’s something I’ve availed myself of on more than one occasion, which I thank them for. So I think it’s a wonderful charity. And it’s a wonderful way of looking at people with MS and going, do you know what, so much can be done. Isn’t what we want, when we’re diagnosed with anything, the power to take control and go, I can actually steer some of this. Isn’t that what we’re all looking for in every every pill we pop, every drug we have, every time a nurse sticks a needle into my arm? Isn’t that what we’re looking for, a little bit of power to go, do you know what, I’m, I’m in control of my MS. I’m in control of my body?

 

Geoff Allix  31:16

Yeah, and I think that’s crucial actually, the fact that  you are taking control as part of the whole thing, you can drive it yourself.

 

Erika North  31:27

Couldn’t agree more, couldn’t agree more.

 

Geoff Allix  31:28

And so how did you find it, actually adapting your lifestyle? You know, particularly things, the obvious things like diet, you know, did you find that a big issue with your lifestyle?

 

Erika North  31:42

I’ll be honest, I’m not as good on the diet aspects as I could always be. And I’m also not as good on the exercise aspects as I could always be. Having said that, I am sometimes and sometimes is better than nothing. I can sometimes tell in my body. Well, I haven’t been as good as I should have been. And that’s really a sort of a built in alarm going, hang on, Erika, come on, get back to the gym, get back to doing what you need to do, get back to pounding the pavement, whatever it may be that I’m doing at that time. And I just think that internal conversation with your body and listening to your body, that’s something we all have to do a bit more when you have an MS diagnosis, or certainly should be doing it. But to be honest, we’re probably doing beforehand, when you were going hang on a second, why is my body behaving in this way? This isn’t like my friends’ and relatives’. When I look around what’s going on here. I think we’re more tuned in to our bodies, we’re more predisposed to be you know, listening and looking for things when they’re not going the way that we want them to go. And I just don’t see any negatives and why someone wouldn’t want to at least read and find out more. That’s you know, what we’d love to invite people to do I suppose with a podcast like this is just get more people available to benefit from it. Because I genuinely think you will, as I say, if worst case scenario, you don’t, you know, you get a free book that’s very, very heavy and you can use it as a doorstop. I personally think there’s a lot more to it than that.

 

Geoff Allix  33:06

I think the other thing is, it’s just general, good health advice as well. I’ve come across a few other things. One particular one was there’s a guy called Rangan Chatterjee, who does BBC stuff. He’s a doctor on some BBC programmes. And he’s got a book called The Four Pillar Plan. That’s just general health advice. And I read it and I thought that is Overcoming MS. Most of Overcoming MS. I’m obviously not taking the disease modifying therapies, but in terms of the diet, exercise, stress release, stress reduction, it’s all exactly the same. And that’s just general health advice for everyone. And you think, okay, it’s it’s not, you know, it’s not specific thing. This is just general healthy advice to live by.

 

Erika North  33:59

I definitely believe that. I think you’re absolutely right. And I think that’s why I say if even if it’s not you, who’s the patient, I don’t want to use the word patient again, because it puts you in that box. If you’re living with someone with MS, if you’re a relative of someone with MS. If you wanted to follow the OMS Bible, as I call it, you will definitely benefit as much as the person with MS as a condition. I do believe that because I think it’s a lot of, it is just basic. I won’t go as far as to say common sense, but it’s just basically wisdom that when you read it, you go, yeah, I can understand why, you know, having that mental conversation with yourself and using those words rather than the doom and gloom this is all bad. Of course, that’s going to make a difference to the way your body behaves over the following days. Because you know, that’s such a crucial little thing. And that’s nothing to do with having MS. That is literally how the internal conversation we have with ourselves. If you’re using positive language that is going to benefit your body more whatever you’re trying to overcome. Nothing to do with MS. Just being a human being, Isn’t life going to be easier if we all talk to ourselves with kindness? Not you know, oh, I hate myself because my body doesn’t do this. I hate myself because I’m not thin enough. I hate myself because my hair isn’t long enough. I hate myself because I got those color eyes, whatever it may be, change that language and go, do you know what? What is in my control? What can I change? Well, I can diet, I can eat healthily, I can give my body what it needs. I can grow my hair, I can put into my body the things that will make that easier to do. Okay, I can’t change my eyesight, I can go and get coloured contact lenses. Actually, this color is a really great color. This is a more unusual color. Why did I think I wanted the same color that everybody else has, you know, if you’re using positive language, I think that is something that everyone on the planet could genuinely benefit from, I think there will be fewer wars and spats and you know, people in power, I’m not gonna mention anybody. You know, if they maybe spoke with a bit of thought and a bit of kindness and thinking about other people. And obviously, in the present moment, there are huge conversations going on about the color of people’s skin. But of course, it goes without saying, you treat people as human beings and the same way you’d want to be treated, and spreading hate, be it over someone’s illness, or the color of their skin, or whatever it may be, a disability, you know, is never going to be the way to make progress. I genuinely believe that from the bottom of my heart, and it frustrates me that things are changing so slowly, but you know what they are changing. And that is a great thing. So let’s look at what we can do, which OMS is all about looking at what we can do, rather than looking at what we can’t do. And of course in COVID times. It’s scary. Of course it is and you wouldn’t be human, if you didn’t say the past few months have affected the way you look at the world and look at your life.

 

Geoff Allix  36:51

And do you think, mentioning COVID. Do you think that has that affected how you can live healthily and affected getting hold of healthy food, affected being able to do exercises that affect you and how have you dealt with that?

 

Erika North  37:11

I won’t lie, it takes a little bit more thought and a little bit more planning. Not so much now, because we’re coming out of lockdown. But the first few months, there were challenges there, you know, some of the shops that I shop at weren’t necessarily open. The Internet, again, is a wonderful tool, when it’s used properly. You know, the world doesn’t have to be quite so cut off if you, you know, get creative and try and track down some of the things that you want or need. Exercise again. You know, it’s thinking outside the box, it’s going to okay, I can’t get to the gym. But what I can do is I can go out walking, and I can go out running. And I can do those things if you can motivate yourself to do so. Not always easy at the start of lockdown, but certainly feasible, certainly doable. And hopefully now as things start to return to at least the new normal, more of those avenues or more of those aspects of our lives are open again or reopening soon. And so it is a case of, do you know what. Let’s do this, let’s let’s make this a positive, let’s do what we need to do to get back to as normal as we possibly can. And yes, again, that’s about control. That’s why Covid was so scary, because the control was suddenly taken out of our hands. And all of a sudden, there was this scary virus around and we all had to change things to accommodate it. But do you know what, it doesn’t have to be a deal breaker, I don’t think it’s something that, you know, completely stops us doing anything. And again, if you think it does, then you need to look again, because there are so many, you know, shops and things that you can find, maybe you can’t go to your favorite shop down the road. But I bet you someone selling it online, I bet you if you travel a bit further it is there somewhere. And I bet you there is exercise you can do even within your own four walls, maybe not the exercises you were doing 12 months ago. But hey, it’ll exercise different parts of your body. And maybe you’ll benefit from that in ways that you couldn’t have imagined before COVID started. And hopefully as long as we’re all sensible about it. You know, I know obviously, many people have been affected far more deeply by COVID than I have. And again, I thank my lucky stars. But I’m not one of those people who has had the virus and it hasn’t taken any of my loved ones yet. But that’s not saying that I don’t think it will at some point. The only reason is because the elderly people in my family I’d sadly lost a few years before, I lost my mom in her 80s, 3 years ago, and she was the last one of my family that I lost and that’s very, very sad, immensely sad. My Auntie Shirley, I lost not through COVID, earlier this year, again COVID made her diagnose at the end of her life more difficult. I couldn’t see her. That was heartbreaking. So I say, I’ve been fortunate that it was just my Auntie Shirley who I lost during that period and thankfully it wasn’t COVID-19 it was to something else. You know, so I’m not saying 2020 has been a great year for anybody. But as I say, I think if everyone is sensible about this and thinks, quietly takes a step back and thinks about these things, what that’s not talking about what you can’t do, what can we do? Again, it’s that power again, isn’t it? And that’s what Overcoming MS is all about. Hopefully, if you’ve read the book, and you’re involved in, you’re on that, on that, that ride already, you’re you’re with the team, and you’re trying to introduce it into aspects of your life. Hopefully, that will affect you looking at COVID? Because you’re looking at it positively going well. Okay. I can’t do one thing. But that doesn’t mean everything’s cut off to me, What can I do?

 

Geoff Allix  40:38

So thanks for that. To wrap up, do you have a nugget of advice that you could give to people who are newly diagnosed with MS.

 

Erika North  40:50

Please, don’t let it upset you too much. I know, that’s a crazy thing to say. And of course, you’re going to go through periods of time, I did it, it was years before I actually got my head around it and came to terms with it. But, do you know what, there is light at the end of the tunnel, and it’s not a tiny prick of light, it’s a lot of light. There are many things coming along at the moment, there are many medications, there are many options. OMS is an option. This is a fantastic way of actually, you taking the power and tackling not only your illness, but actually maybe an unhealthy lifestyle that you have previously, that you can make yourself, your body healthier than it’s ever been by following the diet and the advice that OMS can give you and by getting on board. And I just would like to take anyone who’s newly diagnosed even with COVID-19 and give them a big hug and say it’s all okay. Don’t worry, there are many things that you can do. There are many things available now. And if anyone wants to reach out to me having heard this and would like me to hold their hand and would like any particular pieces of advice as to what happened on my disease path with MS. My long journey with MS. You know, I’m more than happy to enter that conversation with anyone because at the end of the day, we’re all human beings. Let’s get through this together. And I know you don’t want to be diagnosed with MS. Neither did I. But it doesn’t have to be the end of anything. And there are so many opportunities out there for you. Yes, it means you have to look at life a bit more creatively. Yes, it means you might have to stop doing something unhealthy, things that you used to love doing. But it doesn’t have to be this ghastly sentence that maybe it was 40-50 years ago, when no one knew an awful lot about the illness. Thank goodness, the doctors are there doing all sorts of research. They’re incredibly clever. And do you know what maybe as I said to you earlier, I’d love to think in 10-20 years, we’ll be having this conversation about a cure for MS. And I think that’s certainly more possible today than it’s ever been in any point in our history.

 

Geoff Allix  42:51

With that, thank you very much for joining us on the Living Well with MS podcast. And I very much look forward to listening to you on the radio sometime in the future.

 

Erika North  43:01

Thank you. Well, I’ve just made you my friend on Facebook. So there you go. We can meet cyberly again. It’s been great talking to you, Geoff, thank you very much indeed for listening to me for an hour because any listener of my radio show knows, it can be quite heavy going at times. Normally they have songs in between to lighten the mood, but you didn’t have that Geoff, I do apologize. Thank you.

 

Geoff Allix  43:29

With that, I would like to thank you all for listening to this episode of Living Well with MS. Remember, there is a wealth of information at overcomingms.org, including show notes, and an archive of all Living Well with MS episodes. Once again, that’s overcomingms.org. There you can also find OMS friendly recipes and exercise tips. Connect with other OMSers in your local area. There are OMS circles program, and learn about the latest research going on in the MS world generally and related to OMS specifically, I encourage you to register on the site, and stay informed about the latest news and updates. I also encourage you to subscribe to this podcast, so you never miss an episode. And please feel free to share it with others who might find it of value. Let us know what you think about the podcast by leaving a review. And if you have ideas for future episodes, we’d love to hear from you. So please contact us via our website overcomingms.org. Thanks again for listening, and for joining me on this journey to Overcoming MS and living well with multiple sclerosis. I’m Geoff Allix and I’ll see you next time.