S6E14 Following and supporting Overcoming MS as a couple

Overcoming MS  00:00 

Welcome to Living well with MS. This show comes to you from Overcoming MS. The world’s leading multiple sclerosis healthy lifestyle charity, which helps people live a full and healthy life through the Overcoming MS program. We interview a range of experts and people with multiple sclerosis. Please remember all opinions expressed are their own, Help others discover Living Well with MS. If you enjoy the show, please rate and review us wherever you listen to podcasts. And now let’s meet our guest.  

 Geoff Allix  00:36 

Welcome to the latest edition of the Overcoming MS podcast Living Well with MS. Joining me on this edition is Jane Ariey-Regardsoe who is a  joint member of the Southwest circle in the UK, which I’m also a member of. And she’s also joined by husband Ian. And what they’re going to talk about today is a charity challange they’re doing, so you can introduce it Jane, what’s the name of your charity challenge? 

 Jane Airey-Regardsoe  01:03 

The challenge is the OMS Door to Door challenge. 

 Geoff Allix  01:06 

They’re doing the OMS Door to Door challenge and so we’ll discuss more about that as we go on. So firstly, Jane, could you introduce yourself and tell us a little bit about your MS journey and your Overcoming MS journey? 

 Jane Airey-Regardsoe  01:18 

Yeah, absolutely. Thank you, Geoff. So I live in mid Devon, I was diagnosed with my MS in 2020. But actually my diagnosis journey was much longer than that as it is for a lot of people, I ended up getting the diagnosis because I had hearing problems. I’ve got tinnitus, but only in one ear. And that naturally leads you to have an MRI scan. So I had my MRI scan that went back to my GP and it sort of said something really weird in the letter, like, there’s some, there’s sort of some patches, you know, showing on the brain scan, it’s probably related to age, it was really badly written, it was very vague. And I sort of said to my doctor, you know, I’m really not very happy about that. If you’ve got something going on, I’d like to know a bit more about it. And your immediate sort of thought really is, you know, dementia, early onset dementia, you know, I’m I’m going to be 60 this year. So, you know, it’s not that unrealistic to sort of think when you’ve got some something showing an MRI scan that that might be something to worry about anyway. And alongside that, I went along to my optician, and they were really unhappy with my my range of field test. So did that couple of times that I’m still not happy, I want to send you to the eye clinic. I went along there and had a massive shock to be told that they believed I had had a mini stroke. So completely not expecting it. So I said to them, Well, can I speak to the stroke team then? And so she made a few phone calls. She says, Oh no, I’m sorry. We can’t put you in touch with the stroke team. Because you’re not having a stroke now. You know, it’s not acute. So back to the doctor. Anyway, so the doctor then obviously sent me to a neurologist and finally felt that I was on the right path, started to have the tests. Soon as the doctor saw me neurologist saw me he said that you haven’t had a stroke, he said, but there is something going on. And so he did an MRI scan, and a lumbar puncture. And I got the diagnosis actually during lockdown and as it was for everybody a very odd time. So I didn’t get my diagnosis in person, or by telephone. I just had it in it in the letter, which was a huge shock because he had steered me away from MS. And he’d said don’t start looking at MS because there’s all sorts of horrible stuff on the internet. And I don’t I don’t actually think it’s that. So that was a real shock for us both. So when I went to back to see the neurologist, and we talked about it, we identified that I’ve actually had problems with my eyesight in 2012. I call it a blind spot. It’s something much more complicated than that, where I actually don’t have the vision in one of the bottom quarters of my eye, which is related to my brain. But I could also remember back to back in I think it was 2002 actually losing the feeling in my fingers. So losing the sensation in my fingers. I used to make iced birthday cakes for my son every year. And I never did one after that because it was too complicated. You know that that fine. So it’s funny, isn’t it? You get your diagnosis. And it’s almost like the pieces of a jigsaw fall into place. So so that was what happened for me. The first thing I did was obviously I went on to the big MS charities I read about it. And you’re in a bit of shock. Then I thought, well, I need to reach out to some people. And I actually went on to some of the bigger charities, their forums, and I found them so depressing, that I just stopped doing anything. And then take us on a year to 2021 I was chatting to one of my friends, and her husband has Parkinson’s, and he had been on the internet. And he had found a chap who was following a healthy way of, of eating of living. I thought, yeah, I really do need to pull myself together, see if I can find something that’s going to help. So back on the internet, and that’s when I came across OMS went onto the website started listening to one of the podcasts which was which was you Geoff, I think you were talking to the George Jellinek back, Ben. And I thought this sounds really good. So got the book, the big, thick book and pretty much demolished it really read it really quickly then gave it to you to read, didn’t I Ian? And and, yeah, that was it. You know, since that time, that that was the big change for me. 

 Geoff Allix  06:16 

So, to touch on that, because actually my wife hasn’t read the read the whole book where I’d quite like her to but I know it’s a big book. There’s so much shorter ones, like the handbook which is easier and so, yes. As a partner of someone who’s got MS and is new to following the Overcoming MS journey. Firstly, how did it change your life? And and what do you do now to support Jane with her Overcoming MS journey? 

 Ian Airey-Regardsoe  06:49 

Obviously, it’s a major shock for both of us because we hadn’t been led to believe that it was MS. We immediately sort of looked at our lifestyle, what we’re doing COVID was obviously right in the middle of the COVID it was quite difficult period of time anyway, that at the end of it, we found the OMS program. And I did read the book. And I think supporting Jane in the program, there’s lots of different aspects of it is trying to lead as normal life as possible. Being a husband, not a carer, Jane doesn’t need a carer, doesn’t want a carer. But being there to help and support when, when there’s a bad day or when the fatigue comes in. I try and keep informed and up to date on the OMS program. And also encourage her to you know, to take part in to to adopt parts of the programs she finds a little bit more difficult. 

 Geoff Allix  08:03 

Ian do you implement some of it as well? 

 Ian Airey-Regardsoe  08:06 

We both enjoy cooking. So certainly the diet like we cook together, we eat exactly the same. It’s very rare that I eat meat. I exercise. Not not so hot on the meditation, but generally.  

 Jane Airey-Regardsoe  08:23 

You’re putting yourself down there because you know you can leave, follow the food plan at home different if perhaps we go out for a meal or we’re going around friends that you know you just stopped eating meat at home, stopped eating cheese which you absolutely love. It makes it a heck of a lot easier for me when Ian’s following it as well not having to think about two different types of food not having things in the cupboards that are real temptation. 

 Geoff Allix  08:55 

The more we learn, the more we find that it’s actually just a healthy way of life. It’s not just an MS thing, it’s a cancer thing. It’s a Parkinson’s, you mentioned, I’ve gotten friends with Parkinson’s and they have a very similar sort of encouragement to eat similarly and mindfulness and exercise and all these things. I mean there’s a few things which is specific like vitamin D. But again actually that’s sort of starting to become in the UK that’s now standard advice isn’t it to supplement vitamin D, so pretty much we are living a healthy lifestyle by any regards. And yes, it’s not good to anyone in the home. 

 Overcoming MS  09:26 

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 Geoff Allix  09:52 

The whole program I mentioned so we’ve got the diet — plant based plus seafood, vitamin D, meditation, exercise. So how long have you been following that journey? And did you find it easy to adopt the program? 

 Jane Airey-Regardsoe  10:07 

Well, that’s a real mixture. So yeah, I started. So I adopted it in 2021. Some parts were definitely easier than others. The diet side, I think was the easiest. I mean, as Ian was saying, we both enjoy cooking food, we both have an interest in food. So we were already experimenting with some vegan food, we still include the fish side of things in our meals. So that was the easiest, the vitamin D, well, I take vitamin D spray, but actually, I get my vitamin D tested, and I’ve really struggled to get it to the right levels. So I’m now taking a pretty, fairly heavy whack of vitamin D, every day, and I’m finally getting up to those levels. So whilst it’s an easy thing to do, reaching the level that was needed to fit in with the program was was actually quite hard. I’ve got a dog that fall on my lap here. So that’s what I’m moving about.  

 Geoff Allix  11:17 

So you take vitamin D, and it takes time, doesn’t it vitamin D? So you can’t just take it then tomorrow, your levels are up, you’ve got to get checked every six months or so because it will take ages. 

 Jane Airey-Regardsoe  11:28 

Yeah, well that’s what I do. I test in the spring and then in the autumn. And I basically just wasn’t really moving, you know, I had to keep increasing the the amounts. But then meditation. I found that quite easy. I found it quite easy to do. What I found hard was finding a routine so that I would do it regularly. The hardest bit for me, exercise, you know, really, really is. I get hot when I exercise, which is becomes very uncomfortable. As everybody with MS knows, I hadn’t realized that perhaps that was one of the reasons why I didn’t like exercise so much. So that’s been the hardest thing to incorporate. I do Pilates and my Pilates teacher is a neurological Pilates teacher have one to ones with her. That has been amazing. Because balance was a big issue for me. And she’s really, you know, I used to trip and I used to fall quite a lot. And that just doesn’t happen anymore. So that’s amazing. I also started doing strength work as well. And more recently doing some swimming because I was doing the Pilates but I wasn’t doing any sort of aerobic exercise, which is really important. Yeah, so definitely the exercise is the hardest thing for me to get fit in. And the thing that I really have to be pushed to do. 

 Geoff Allix  12:56 

Swimming is good, because it keeps you cool as well. 

 Jane Airey-Regardsoe  13:00 

Yeah, absolutely. 

 Geoff Allix  13:02 

And do you have any tips for someone who’s new to the program? What tips would you give them about actually starting the program and getting into the program? 

 Jane Airey-Regardsoe  13:12 

I think one of the biggest tips is to sort of know yourself, because you know, some people try to incorporate the whole thing straightaway. And that works really well for them. But for some people, they think that they should be incorporating every aspect of the program straightaway, it’s bit like going on a diet. And when they don’t do it, when they can’t fit it all in when they can’t make all of their changes, they sort of beat themselves up a bit, being really hard on themselves for actually, if you need to take it slowly, if you need to take it bit by bit, I think just understand that that’s fine. You know, it’s okay to do that. And I think that if you are the sort of person who needs to take it bit by bit, think about the easiest thing, the easiest pillar and turn that into a habit. So turn it into something you don’t have to think about, you know, going for instance, if it’s eating, if it’s the food side, one of the one of the things that we do now is we have sort of like we have a curry night, and we might have an Italian night which might be a pasta, so if on particular days of the week, I know what I’m cooking, but I might just need different ingredients in it each week. Or there will be things that will be in the freezer, you know, like we’ve got curries in the freezer. All things that just make it easier to do because I don’t have to think about it so much. 

 Geoff Allix  14:41 

We’re talking about diet on to the meat of this, sorry bad pun. So Ian you’re training for this amazing bike ride. So could you tell us a bit about the OMS Door to Door challenge? 

 Ian Airey-Regardsoe  14:53 

It’s 950 miles away. That’s something I’ve always wanted to do. I’ve always loved the Pyranees so did a lot of mountaineering down there, some trekking, and I started cycling to get fit for the trekking and cycling took over. And as we were coming back from France last year, and there was a book that detailed a route down through France from the north coast to the south coast. So I picked it up just to read and decided pretty much within an hour that I was going to do this cycle. 

 Geoff Allix  15:29 

You’ve got a place in the Pyrenees. 

 Ian Airey-Regardsoe  15:30 

We’ve got a very small village house, in the mountains. So it’s nothing special, nothing flash. So that’s where the idea came from. 

 Geoff Allix  15:42 

And what’s your rough route, you’re going down the middle of France or down the coast? 

 Ian Airey-Regardsoe  15:49 

Well, the first, the longest day distance, why is this from here to Poole down through the shared openings first through the Loire, then just Western Limoges. Skirting around Toulouse that’s roughly right down the middle. And the aim is it’s it’s not a race, it’s going through parts of France, we don’t know. So it’s as much interest to see France. 

 Geoff Allix  16:21 

And you’re seeing the length of France pretty much top to bottom. 

 Ian Airey-Regardsoe  16:26 

So it’s 18 cycling days is about 50 miles a day, which,  

 Jane Airey-Regardsoe  16:30 

But it’s not flat, though, is it?  

 Ian Airey-Regardsoe  16:32 

Some of it is, some of it isn’t.  

 Jane Airey-Regardsoe  16:34 

Yeah, but we get to the Pyrenees. And that’s pretty hilly.  

 

Ian Airey-Regardsoe  16:39 

The last few days will be the hardest. 

 Geoff Allix  16:43 

Well, you should be pretty fit by then I imagine. So there are quite a lot of charities, and there’s many MS charities as well. So why have you chosen to raise money for Overcoming? MS? 

 Jane Airey-Regardsoe  16:56 

Yeah, I think it was, for us, it was an easy choice, because quite right, there are a lot of MS charities out there. But Overcoming MS is the charity that’s made the biggest difference to our lives, isn’t it? Yeah, it’s the charity that’s given us hope of leading the best life that we can, the best life possible. Because as you know, you get to know my MS diagnosis. It’s not a diagnosis for me, it’s a diagnosis for the family. And so you know, it impacts on me, it impacts on Ian and it impacts on the things that we thought we’d be doing in the future. And the OMS program helps us to believe that we’ll still be able to do some of those things that we wanted to do. But but not only that, it gives you a roadmap to do it. You know, it gives you the program. And there’s so many resources, and there’s so much help out there. So, you know, you’ve got the program, you’ve got the route map. But in some ways, the biggest thing is the community, you know, meeting other people with MS who are like minded who want to make a positive difference. You know, you can’t you couldn’t put a value on that. It’s just amazing. I think so. Yeah, it was it was sort of an obvious choice. 

 Geoff Allix  18:18 

Yeah. How much preparation is this going to take? Are you doing a lot of training now? 

 Ian Airey-Regardsoe  18:24 

I am cycling on a regular basis now sort of 40 miles a day, two to three times a week, as well as shorter rides. Preparation wise as much if not more work has gone into planning it than the actual physical exercise. The route had to work for both of us, had to be planned in a way that made it as easy as we could for Jane, when she’ll be driving the campervan with the dogs. Most of the work has gone into that rather than the actual physical prep on a bike. 

 Geoff Allix  19:07 

Jane. So you and the dogs are the support team when it comes to them. So how are you? I mean, is it daunting for you that the physical side of it and the emotional support side? 

 Jane Airey-Regardsoe  19:20 

Absolutely. And I think there’s there’s a number of reasons for that. There’s obviously the fatigue, which is if you like the obvious one, so many people with MS have fatigue. And you can imagine that, you know, doing doing all the bits, all the support bits is going to be tiring. But then there’s also the stress of the unknown as well. And we know that stress is often a big part with MS that you know, if you’re having stressful days, you tend to you know, the symptoms step up a bit, don’t they? And it affects your sleep. Eat and so on. So there are various sort of aspects. So the days are going to be busy. Not only obviously, you know, sending Ian off on his bike, but then I’ll be packing up the campervan, making sure the dogs are walked, driving on to the next site, but also via getting any shopping that needs to be done making sure we stopped somewhere so that the dogs can be walked, finding the site, then setting up the campervan, getting any washing done that needs to be done, you know all that basic stuff that you know all has to be fitted in. And so I think part of the challenge there is going to be making sure I still am able to keep up with the program in the way that I want to keep up with it. So doing my meditation every day, doing some of my balance exercises that I do every day, perhaps doing some some weights exercises. And I think that a lot of that sort of comes down to planning, you know, the better planned I am the better routine that we have in the day, then the the better that’s going to be when it sort of comes to the stress side of it, you know. My French is not good at all. You know, I can speak. And I can be understood, I can speak in like the the current, you know, the present tense, but I can’t speak in the past tense or the future tense very well. And as soon as somebody speaks to me in French, it’s like my mind goes goes blank, and I just don’t understand what they said. So it’s sort of a bit of an a one sided conversation that I have. So that is a bit of a worry. So yeah, there’s there’s lots of things that I’m concerned about. It is huge challenge for me, definitely going to be out of my comfort zone. And one one of the things we have made a decision on is that for the sort of the beginning parts of that challenge, we’re actually going to bring Ian’s cousin with us as well. So that if anything goes wrong, there’s somebody on hand to help out. You know, if the van breaks down, please, can you tow my camper van with your tractor, I don’t know how to say that. Something awful like that. His cousin is is actually a fluent French speaker, which is going to take a huge amount of stress off me. Because even in spite of that sort of thing, it’s still going to be very demanding. I’m definitely going to be out of my comfort zone. But I mean, one of the reasons why I wanted to sort of chat to you is that I hope that people who listen to your podcast and listen to me talking about this, you know, I’m in my 60th year, and I stopped work because of my MS. So to be able to, you know, do something that’s putting me out of my comfort zone is a huge thing. And I’m sort of saying to people who are my sort of age, you know, if I can do it, you can find something to, you know, to, you know, be brave, go outside of your comfort zone, you can do it as well. 

 Geoff Allix  23:25 

No, can you kind of think, oh, it’s the distance. But actually yeah, if you’re driving, it’s not. That’s not a big thing at all. But as you say, then you start thinking actually, when you were saying all of the other things you’ve got to do, of course, you’ve got to do all the packing up. You’ve got to do all the washing up, cleaning, all that sort of stuff. There’s a lot to do a sport run actually, yeah, the driving is a smaller part of that. It’s the other stuff, isn’t it? 

 Jane Airey-Regardsoe  23:47 

Yes. Yeah, absolutely. Yeah. 

 Geoff Allix  23:50 

So if anyone’s thinking about fundraising, do you have any tips for someone who’s thinking about doing their own? Whether it’s physical challenge, or whether it’s something completely different? Do you have any tips about fundraising? 

 Jane Airey-Regardsoe  24:03 

Well, I think in terms of actually raising funds, I think it’s got to be, you know, make it really easy. We’ve got a JustGiving page, so all the money goes through JustGiving. So that means the admin side of it is really easy. You know, everybody gets thanked automatically and so on, make it fun, as well. So the things that we’ve done to to fundraise are things that we enjoy. So back in March, we had a sort of like a fundraising event. We called it Curry in a Hurry. It had been done in our village before. And basically, we live in a tiny village, there is no pub, you have to drive anywhere to you know, get to go to a shop or get to take away. So the curries were made, people pre ordered the curries they wanted and then they were delivered at a certain time to people’s houses and it was so successful, really simple idea. Good fun to do. We had friends helping us do this as well couldn’t have done it without them. And a team of our Deliveroo drivers as we call them. So that was really good. I’ve been doing a blog online. So every week, I sort of update people about our training, Ian’s routes, just what’s been happening, really. And that keeps people involved. So that’s really good. And then we have another fundraising event just before we leave. So we go on the eighth of September, and on the sixth of September, we have a pop-in pub, because our local pub is closed. And that is, that’s used to raise money for particular charities. So the one is September, just before we go will be for OMS. So all the proceeds from the bar and anything else that’s going on that night will will also be for fundraising. So those are the things that we enjoy. You know, they’re easy for us to do. Yeah, so make it easy. Make it fun, I think and, you know, thank everybody, and just keep updating people about how are you going.  

 Geoff Allix  26:04 

Firstly, there’ll be links in the show notes. So check them out, because there’ll be links to your JustGiving page, and so on. And definitely encourage people. It’s quite an undertaking. So yeah, good if you’ve got some support. And with that, firstly, good luck. And it sounds amazing as well. I mean, I think you have an amazing time. I’ve seen quite a few bits of France, but you’ll see the bits that you don’t normally see. I just think it’d be fantastic. Good luck. And thank you very much for joining us and telling us your story. 

 Jane Airey-Regardsoe  26:32 

Well, thank you. Thank you, Geoff, for having us. It’s been really good to chat to you and tell you a bit more about it. 

 Overcoming MS  26:39 

Thank you for listening to this episode of Living Well with MS. Please check out this episode’s show notes at overcoming ms.org/podcast you’ll find useful links and bonus information there. Don’t forget to subscribe to the podcast so you never miss an episode. And please rate and review the show to help others find us. This show is made possible by the Overcoming MS community. Our theme music is by Claire and Nev Dean. Our host is Geoff Allix. Our videos are edited by Lorna Greenwood, and I’m the producer, Regina Beach. Have questions or ideas to share? Email us at podcast at overcoming ms.org We’d love to hear from you. The Living Well with MS podcast is for private non commercial use and exists to educate and inspire our community of listeners. We do not offer medical advice. For medical advice please contact your doctor or other licensed healthcare professional.