S6E1 Motivation to follow the Program with Claire and Nev Dean

02:11 Nev: “When we got married, I was rather larger. When we started the diet, I did all the cooking. Obviously [as I was doing the cooking], I started eating the same diet as Claire because I had to cook food for her. Over the years I’ve lost over six and a half stone.”

12:25 Claire: “The year before we found Overcoming MS, we got married, and I was using a wheelchair. Since I’ve been following the [Overcoming MS] diet, I haven’t got any worse and my progression has stopped.”

17:17 Claire: “During lockdown, the MS Centre was closed, and I remember my uncle said to me I could do crunches. I just lay in bed, and I worked on my stomach muscles. I went from 20 [crunches] a day up to 300. I’ve continued to work on my stomach and my abs. Since then, I’ve started on the pull-up bar, and I do that every morning.”

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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  00:37

Welcome to the latest edition of the Living Well with MS podcast. Joining me today are Neff and Claire who are very interesting guests because they actually have written the song which is now outro music so you will probably have heard it already. But also are followers of Overcoming MS and have been to retreats and often play at retreats as well. So firstly, welcome Nev and Claire.

Nev Dean  01:04

Thank you.

Geoff Allix  01:05

And could you introduce yourself?

Claire Dean  01:08

Hi, I’m Claire. I’ve got MS. And I’ve had it since 1999. But and I was diagnosed when I was 19 when I was at university, but I probably had it for about three years before I was diagnosed. But I didn’t find OMS until about 2008 I think. And I’ve been following it since then. And it’s been amazing, because I just literally changed everything overnight. Yeah. Did the exercise, the diet, the meditation, everything. And since then I’ve had no relapses, and I’ve been just stable. So it’s pretty much really good.

Geoff Allix  01:51

And Nev who are you?

Nev Dean  01:56

Yeah. I’m a musician, songwriter, guitarist, performer and Claire’s husband. I do not have MS.

Geoff Allix  02:05

You do not have MS. Do you follow Overcoming MS to an extent?

Nev Dean  02:11

To be honest, when I first met Claire, I was slightly on the larger side. I was about 18 and a half stone. And when we got married, I was in a suit that had 54 chests and 48 waist. So I was rather larger. And when we started the diet, I do all the cooking and stuff. And so obviously I started doing the same diet as Claire because I had to cook food for her. And over the years I’ve lost over six and a half stone.

Claire Dean  02:42

It was easier wasn’t it for you just to rather than cook two separate meals. That’s why we did it.

Nev Dean  02:51

And I was a complete carnivore, you know, and I was a UPF-tastic eater. And now, it’s I feel I’m a totally different person. You know.

Geoff Allix  03:05

I think increasingly the amount of things that come out about different conditions. So like a cancer, you know, someone with cancer will speak to me and I go, Oh, actually, you know, the diet that I’m doing is almost exactly the same. It’s always, you know, cut out dairy, low saturated fat. Cut out red meat. Basically, you just think this is a healthy diet, isn’t it?

Nev Dean  03:31

Yeah, I carried on doing the meditation. You got me into that Claire got me into cold showers as well, which we’ve both found to be very beneficial. Vitamin D, flaxseed oil, you know, everything I’ve found has been of benefit. And that’s to me.

Claire Dean  03:52

We but we do everything sort of together. Because it’s just easier. We both get benefits from it.

Geoff Allix  03:59

But yeah, I’m constantly being told by doctors how healthier and when they do tests and things. Yeah, well, apart from the obvious that the reason I’m in here. Claire so you were diagnosed in ’99. And that, that’s that was a different time. I know. Because my father died he had MS died in 98. And so I’m, I’m well aware that’s a very different situation that I’m in then than what he was in. Yeah. So what was it like then when you got get diagnosed and especially sort of 19 year old?

Claire Dean  04:27

It was really hard in the sense because I gave up sort of dairy and soy but it was really hard because I was at university and so I was just carrying on just a normal life that trying to adapt it I sort of gave up a bit of dairy and change milk but there wasn’t there was nowhere near the food situation that there is now you can get so many different things. So it wasn’t easy to do anything

Nev Dean  04:51

The doctor basically just told you and said good luck.

Claire Dean  04:55

When I got diagnosed my doctor just said yeah, good luck kind of thing and there was nothing Talk about diet or vitamin D.

Geoff Allix  05:03

There was no treatment really to speak of.

Claire Dean  05:06

There was nothing.

Geoff Allix  05:07

I can remember my dad was they discouraged him from doing a lot of exercise. He ate red meat till the end. And I don’t know that I don’t know if he was ever told anything else. But I don’t believe he was ever told anything to change. And they just didn’t know. Did they know?

Claire Dean  05:11

They were like, Don’t do too much, because you don’t want to ware yourself out.  Because they didn’t know. No, I was gonna say even now, I don’t know that they tell people a lot more than that, then sort of in this country? I don’t know. The neurologists do say a little bit more now. But I don’t think diet is a massive thing. When someone gets diagnosed, they’re not sort of given.

Geoff Allix  05:45

That’s something Overcoming MS are really pushing to try and get out there to the MS nurses? And I think it is it’s just a lottery. It depends on what who your nurses. There’s certainly some I mean, I live in the southwest of the UK. And there are a couple down here who do routinely give out the Overcoming MS flyers, which is great. But what if you live somewhere else? And it’s just luck, isn’t it? Whether you find out it really.

Claire Dean  06:10

It is and but it’s also down to people as well, because I used to go to an MS Center. And I have told so many people about and given the book to so many people, I bought so many copies of the book. And just like giving it out to people, and no one will follow it because they’re like, I couldn’t give up that.

Geoff Allix  06:35

Just giving people the information. So Nev, if your partner, as a partner of someone with MS. So a lot of people worry about this, and they worry about telling their partner about MS. So how was it from your side of it? I mean, you’ve been together quite a long time. How did you learned Claire had MS?

Nev Dean  06:58

Well, basically, I met her about 18 years ago. And I joined a health club because as I said, I was somewhat on the rotund side and went and was doing some swimming. And I walked into a swimming pool and saw this girl in a yellow swimming costume with blonde hair having difficulty getting into the the swimming pool. And from the moment I saw her I had an overriding compulsion it was a voice in my head just saying you have to get to know this girl. And I don’t know where that came from my higher power, I don’t know. But it was something beyond my control. And over a period of time, I got to know Claire started talking and chatting to her. And she told me she’d got MS. And prevelly. previously to this, I’d worked on New Pathways Magazine, where I’d recorded talking books for them.

Claire Dean  08:01

New Pathways is an MS Magazine.

Geoff Allix  08:04

Yeah, it’s in the UK.

Nev Dean  08:08

So I had, it was almost like, I’ve got a bit of a grounding with regard to the latest things that were out it was the goat serum at the time. And you know, got a rapport with Claire. And then my big chat up line was do you sing or play guitar? And she says, Yes, I write my own songs. So I said, Well, you better get down the studio then. That’s how it all began when I was when I was initially when I initially met Claire. It was Claire with MS. You know, I knew Claire, it was Claire, and she had MS. After a period of time it became well there’s Claire. And then there’s also MS. And now, I can’t say the word I’d like to say that MS can do. But basically, you know, it’s just me and Claire. That’s it. And we live our lives together and do the best that we can for each other when we can you know, and I’m not saying there isn’t frustration and there isn’t anger and there isn’t all sorts of, you know, all the emotions that go with it. But we just get on.

Geoff Allix  09:13

I think it is difficult for us. It’s hard for the person who’s got it but equally it’s hard for the person whose partner

Nev Dean  09:19

Because there’s the one person you can take it out on really, you know. We get on okay, you know, and there were times obviously when I realized Claire can get frustrated. I mean, she’s always smiling. She’s an inspiration to so many people she does so much. She gives so much of herself, you know she does the Zoom sessions.

Claire Dean  09:46

Zoom sessions. I started cycling when lock down and everything closed, the MS Center closed. So I started I joined there was a kayak Club and the guy from there was taking these sessions and I joined them and they’re on a bike. And I’ve continued it since locked down. And now I’m just getting other people with MS to join me and do it. And I’ve got quite a community people. So it’s really good early, lots of OMS. Yeah.

Nev Dean  10:16

I was saying, anyone who’s interested in hearing this, if they want to join, I’m sure something can be done to put a link up somewhere.

Geoff Allix  10:23

We can put links in the show notes. Yeah, absolutely. I carried on and behind me is my, so I went for it with a trike, because I’m not sure if my balance is probably terrible anyway, but it’s the fact that I’m left side I’ve left so problems. So if I needed to put my left foot down, when I stopped a bike, it wouldn’t go down fast enough. I know what would happened. Yeah, it actually solved it for me because it’s stable. And then I can actually get out and about and so

Claire Dean  10:53

Mine’s a statick bike so yeah, I stay in the wheelchair and just hold on. Yeah.

Geoff Allix  11:00

So you could do like one of the under desk one sort of thing.

Nev Dean  11:04

It’s called a MOTOmed

Claire Dean  11:05

It’s like a bike, but without the saddle, the so it doesn’t have the back the backside of it. So it’s just like the front side of a bike.

Nev Dean  11:14

Okay, so you’ve got handle, pedals and driver sits in the chair and pedal.

Overcoming MS  11:21

Have you signed up to the new Overcoming MS app. If not, download the live well hub in your app store and join the Overcoming MS community, get support, find connections and feel motivated to live well with MS. Download the live well hub today.

Geoff Allix  11:38

So as mentioned, then you’re a wheelchair user. Now, and I use, I always use a stick and if we’re going any sort of long distance I use a mobility scooter and I certainly do feel like I’m not typical of someone following Overcoming MS. So it retreats and things get togethers. And there’s a lot of people there who are very, very active and running. There’s like a whole 5k runners club for people with MS there are people running marathons. But I do find I’m on the certainly the EMS, Overcoming MS groups are involved in I’m on the sort of less able end of the spectrum, certainly. So for somebody who’s a wheelchairs user, how do you find sort of Overcoming MS. As somebody found it a long time after diagnosis? How does it motivate you? And how do you find it?

Claire Dean  12:30

It just motivates me because I was going downhill at such a quick pace. And I really was sort of over such a short time. And I was in a wheelchair when we got married.

Nev Dean  12:42

So when I met Claire she was walking.

Claire Dean  12:44

And that was the year before. Yeah, the the year before we found OMS we we got married, and I was using a wheelchair then so. But since then, since I’ve been doing the diet, I haven’t got any worse. So and it’s just that I’ve just stopped all my progression.

Nev Dean  13:02

When we saw close neurologists about two or three years ago. He had a student with him and he said you won’t hear anyone say anything like this in your career. But this person here has actually she’s secondary progressive, but she’s actually improved. Claire had much improved core. Apparently she had cerebral speach that’s gone. Her whole awareness her whole physicality has changed. And he said that it’s very rare that you hear someone say that someone who’s had it for this long, has improved. And yet she has. Oh and there was a thing with her eye. Her eye used to sort of catch up with itself you know if she moved around or look and and that’s gone as well.

Claire Dean  13:52

And there was when we made a video, wasn’t it? And we could you could you that’s how I saw it. And you could like just watch and it was really funny because like I didn’t really realize

Nev Dean  14:05

it was a music video.

Geoff Allix  14:08

You mentioned me is music musician. So you’ve got the you’ve created the new theme music for this season of Overcoming MS that you wrote and produce that. So tell us about the process of that. What’s it like to write the theme music?

Nev Dean  14:21

Well, I was really pleased to be asked wasn’t I and I wanted something sort of bright and hopeful sounding but not to over imposing and I came up basically you will know a D shape and individually plucked the D strings, doing a couple of little additions and then synced it up with a delay, which then gave it that Dukka Dukka Dukka Dukka sound and that was the basis then once I’ve got that one thing I can then just listen and you know put some keys down and Just play around with it a little bit, just to enhance the whole thing. And I think yeah, I was really pleased with that I think it worked out quite well. I have a process of when I write, I literally record and play. And I don’t even know what I’m going to play sometimes. And, surprisingly, you know, amount of times it works, doesn’t it. And that’s what happened with that I came up, I had this just rough idea of this D shape, Capo showed up the neck, and I did it and it worked. And I was very happy with it.

Geoff Allix  15:35

So what sort of music do you play?

Nev Dean  15:41

I would just say it’s eclectic. Because of my age, I mean, it has been the production side of things I’ve been told is sort of like very sort of Pink Floyd, Led Zeppelin sort of sound. And I suppose I just can’t get away from that. I do try.

Geoff Allix  15:58

There’s no, no shame in that.

Nev Dean  16:03

But it’s over a very broad range of genres. So I’ve got some stuff that I literally make noises and sounds with my body and my voice. And there’s no instrumentation at all. It’s just what I create, to you know, very highly produced multi layered guitar, synth, bass, voice, whatever I can find, you know.

Geoff Allix  16:33

If people want to hear you, see you?

Nev Dean  16:37

we’ve got some videos on YouTube, and some audio on SoundCloud, which again, we can give you the links to and if people want to have a listen or a look, which we’d love them to do they can.

Geoff Allix  16:50

They can absolutely, yeah. So you’ve mentioned exercise bit there as well. So you run an exercise group for people with MS. How do you is that your only exercising management exercise? It was mobility issues. Because I think a lot of people worry about that. Because they can’t if they can’t run and stuff like that. Well, how do you actually do any exercise?

Claire Dean  17:17

Yeah, why? Because I’m not working anymore. In bed during lockdown. I started, there was nothing I could do. The MS center was closed. And I was like, What am I going to do? And my uncle, I remember he said to me, you can do sort of stomach crunches, kind of. So I just lay in bed and I worked on my stomach muscles. And I was doing about it went from 20 a day up to sort of 300. And I’ve continued to do 300 a day not full crunches, but just working on my stomach my abs. And yeah, and then since then I’ve been I’ve started in the pull up bar, and I do I bought myself a pull up bar and I do that every morning. After I’ve had a shower, and I then do the bike in the morning when I’m dressed. And I do a session on the bike in the evening. And I do yeah, so I do about 12 miles a day. And I do standing on foam for half an hour in the evening.

Geoff Allix  18:20

That’s loads.

Nev Dean  18:22

And Claire’s got a six pack. So there you go. There’s no excuse Geoff.

Geoff Allix  18:29

So yeah, no, I went from some very active. I was rock climbing, surfing, snowboarding on these things. And I did I used to have, like 1000s of situps but I think that’s the thing. Core is really important is it you underestimate you think? Oh, I can I got a six pack and we’re gonna do sales. But actually, you don’t realize how useful it is almost everything else because it’s so central.

Claire Dean  18:54

I used to talk off jumpers fall forwards. But I don’t do that anymore. I can like your heart. Or your mind can support my own weight and yeah, no, it’s good.

Geoff Allix  19:04

Yeah, that’s, yeah, we have

Claire Dean  19:06

So many things have improved. And yeah, just keep doing it. Because it’s really good. And it makes me feel good as well.

Geoff Allix  19:11

Well does apart from anything else get out of endorphins from exercising. So as a couple then what tips would you give to people as a couple who are navigating MS together?

Nev Dean  19:30

As Clair’s partner I think all I’d say is you’ve got you’ve got to bear in mind where some of the responses, especially anger or frustration is coming from and where it’s directed. Because it’s really just, you’re upset with my strategy, angry and annoyed with yourself. And I’ve got to take that into consideration. It’s not just Claire’s being horrible to me. And they’re not sexy. But obviously, we all have our moments, you know what I mean? Yeah. And it’s, you’ve got to understand and just be a bit compassionate and just be able to step back and take the “me” out of the situation. Because Claire isn’t upset or annoyed with me. She’s upset and annoyed and frustrated with herself, am I right in saying that? And I just think it’s to try and be able to distance yourself also

Claire Dean  20:33

Also communication as well. Yeah.

Nev Dean  20:36

God. Absolutely. I very often will sometimes say to Claire, I just want to talk about this. Um, yeah, I just want to bring this up, if that’s okay. And we gently chat about things. And they will do the same to me now as well. You know, if she feels like I’m not, you know, behaving in a way that is, you know, appropriate or whatever. We’ll chat to each other. Just talk to me and we’ll work it out.

Geoff Allix  21:04

So. Yeah. Yeah. That’s it’s good. Because I think the thing, MS actually, of itself makes it more likely for you to get depressed than I think any other condition. I think, I think they say more so than cancer or anything, actually. And I do. Yeah. I think what’s nice about Overcoming MS is they’ve given us a toolkit to with mindfulness and to deal with that, and that sometimes, yeah, you do you get caught out, but you like to get blindsided by something, and you just get angry. And it’s like, and it does,

Claire Dean  21:36

The meditation does really help. I mean, I did a meditation just before just before this. And I was like, Wow, I feel so much better. Because I’ve been sort of, like, why? Because I had a really bad sleep last night. But that’s another story. But yeah, and the meditation, just take some time out. And because we both do it together, which we do everything together, we do everything together.

Geoff Allix  22:01

That’s brilliant. I think that actually, the little mini meditations are things that are good for me to sometimes.

Claire Dean  22:07

I was talking about the one minute just like, just, yeah, just a minute. Last night when we were on the Zoom session, because again, it’s a lot of people with MS. And we were I was talking to a girl in Germany who joins. And yeah, I was just saying just even if it’s a minute, it doesn’t matter how long it is, however long you’ve got, just take to concentrate on your breathing and just.

Geoff Allix  22:31

So with that, so firstly, thank you very much for that. I mean, if you haven’t listened to the song, because it’s in the outro. But also check out the show notes because partly for more music, if you like music, and secondly, also for the exercise as well. So I think joining Claire on a cycling exercise would be a fantastic opportunity.

Nev Dean  22:55

People will use whatever they’ve got their leave. Yeah, people can lift a  tins of beans depending on their ability. So it doesn’t matter.

Geoff Allix  23:01

So it’s not specifically just cycling.

Claire Dean  23:04

It’s whatever works for you. But people who lifted weights or done yoga, do yoga poses whatever, whatever works for you. rowing machine. Yeah, whatever.

Nev Dean  23:15

So not to be put off thinking you’ve got to have a lot of equipment and stamina. It’s literally, you know, just even a band.

Claire Dean  23:21

A theraband, 10 beans, like whatever. Yeah, yeah. Yeah, you

Geoff Allix  23:25

You don’t need those equipment different. So that’s what you come to realize. Yeah, so yeah, a lot nowadays. You’re almost I mean, you can do even if you got nothing, almost you can do it. But yes, it’s simple things and then you can do plenty of exercise. Right. So with that, thank you very much for joining us. Nev and Claire and yeah, as again, encourage everyone to have a listen and check out the show notes. So thanks for joining us.

Nev Dean  23:51

Yeah, well, thanks very much. Cheers.

Overcoming MS  23:56

Thank you for listening to this episode of Living Well with MS. Please check out this episode’s show notes at overcomingms.org/podcast you’ll find useful links and bonus information there. Don’t forget to subscribe to the podcasts 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 [email protected] We’d love to hear from you.