S3E14 Coffee Break with community member Rachel Knight

Geoff Allix  00:01

Welcome to Living Well with MS Coffee Break a part of the Overcoming MS podcast family, made for people with Multiple Sclerosis interested in making healthy lifestyle choices. Today you’ll meet someone living with MS from our global Overcoming MS community and our guest will share their personal perspective on the positive and practical lifestyle changes they have made, which have helped them lead a fuller life. You can check out our show notes and for more information and useful links, you can find these on our website at overcomingms.org/podcast. If you enjoy the show, please spread the word about us on your social media channels. Finally, don’t forget to subscribe to the show on your favorite podcast platform so you never miss an episode. So get your favorite drink ready and let’s meet our guest. Joining us on this episode of The Overcoming MS Coffee Break is Rachel Knight; Rachel joins us from New Zealand and is a keen volunteer for the Overcoming MS organisation. If you enjoy this podcast, please subscribe and leave us a review on your favorite podcast platform and also it’s well worth registering on the Overcoming MS website at overcomingms.org. Rachel, our audience wants to know a bit about you and your life, so could you share some background on where you’re from what you do, any snippets of your family or personal life or anything about you that would give our listeners a sense of who Rachel Knight is?

 

Rachel Knight  01:29

Thanks, Geoff. Yes, I am based in the Hawke’s Bay in New Zealand, but I grew up in Chester in the UK, and moved to New Zealand about 25 years ago with my husband; Paul and we moved to Wellington. I was working in the electricity industry at the time and we decided to have a change and ended up in New Zealand.

Geoff Allix  01:55

Okay, and how about your experience with MS? Could you provide some context on that? So when you were diagnosed and how initially you coped with that, and how did that go?

Rachel Knight  02:05

I had my first symptoms in 2014 and we were away from home, we were traveling in New Zealand and I suddenly realised I was seeing double and I couldn’t see where I was putting my feet. And I went to an optometrist and couldn’t work out what was going on and he said that I should go and see somebody when I got back home because I had what was called Sixth Nerve Palsy. One of my eyes wasn’t moving properly, so it wasn’t the typical optic neuritis, but whichever way I moved my eyes, one of them still stayed in the center, so that was giving poor vision. So when I got back to Wellington, I was referred to a neurologist and I had other symptoms such as foot drop and hot and cold patches on one of my legs. When I look back now, I was given an MRI, a couple of MRI’s over the next few months and when I look back now at the letter he wrote me he said, either it could be a one off incident or it is more likely to be MS, but at the time I just ignored it, I’m not going to do anything about this, so I’ll just carry on as I am and he offered me a visit to a dietitian, I think even mentioned the George Jelinek’s work, but I just totally ignored it and said no that couldn’t possibly be the case. So, I remember saying to him at the end of the consultation, what would convince you that I don’t have MS? And he said well if you’re not back here within three years, you probably haven’t got it. So at the end of three years having recovered from my symptoms from that attack and not had any more symptoms I celebrated, said I haven’t got MS, but almost three years to the day, I had my next exacerbation and had very similar symptoms, nothing in my eyesight, but foot drop and hot and cold tingling and that was when I got my diagnosis. So I went to a different neurologist but was diagnosed with MS with another MRI and a Lumbar Puncture.

Geoff Allix  04:38

And so did you discover OMS right from the very beginning and were you aware of it from day one?

Rachel Knight  04:48

Yeah, well, that was the first one and the neurologist I saw when I was diagnosed said oh no, no, nothing because I’d asked I specifically asked him; can anything you do in your lifestyle or diet make a difference? And he said, no, just don’t diet yourself away, was his expression. So fortunately, I found out about OMS and found out that there was a retreat sheduled in May, I’d been diagnosed in March, and I found out there was a retreat scheduled in May in Australia, at The Gawler Center near Melbourne. I knew a person who’d been to that center, who had adopted their lifestyle programme for cancer, and he had had great success managing his cancer through their program there. So yes, I was fortunate to get a place that short notice, there was a waiting list and they said, “Oh, it’s hardly worth putting you on the waiting list, but we’ll put you on it” and a place became free about six days before the retreat started. And they rang me and said, oh I don’t suppose you can organise flights or get time off to come and do it? And I said, I’m coming, I’m coming up. Whatever it takes, I’ll come and do it. And there are about 30 of us there and the only regret I have is that I didn’t think to take Paul, my husband with me, because quite a lot of people had support people, either sisters or partners, or mums and dads, there with them and I think that would have been a huge benefit. But it was amazing experience and after that I was all in.

 

Geoff Allix  06:39

I agree about the partners, I went to a retreat and my wife didn’t come. But partly it’s the cost, she was looking after the kids. It would have been, it would have been great for her to, because it’s, I mean, it was very inspirational and I think if she’d been there, then she’d kind of hear what I’d heard and see who I’d seen and but yeah, it’s expensive and, hopefully, with this sort of virtual world, I know they are looking into ways maybe it can be done more virtually and things. And also the Gawler Foundation is shut down, which is a real shame, so yeah, things will have to change. But anyway, so hopefully it can be more accessible to partners. And what challenges did you have in adopting OMS?

Rachel Knight  07:32

Well, the first one was that we came back on, I came back from the Gawler Foundation, first week in May, and we were going away for my 50th birthday, we booked to go away to a cottage on the coast, and it had no shops or supermarkets or anything nearby so we had to take everything we wanted to cook for the two or three days with us. So I took everything that I thought I had converted already and we took what I thought would be a suitable selection of things. And we did it and it was just a bit of a jumping in the deep end to go away and do it all at once. But after we’d done that, we came back and I think I’ve stopped eating out, I stopped eating out for quite a while after I’d converted to the diet, because it just seemed too hard, but now with experience, I can work around that. But that was probably the biggest challenge was going out in public, I suppose eating out in public.

 

Geoff Allix  08:40

I think it has improved in my findings, I think you know it’s got easier and it’s location dependent as well. I think some countries, it’s harder, definitely. But you know a lot of countries, they do have, there’s the vegan movement has made it easier. So then it becomes If it’s a vegan restaurant, then we’re just checking is it fried? And so if it’s something that’s not fried and a vegan restaurant, you’re pretty much there. And that seems to be pretty global, It’s pretty good.

Rachel Knight  09:15

We went to North Norway on a holiday and I did get a little bit frustrated but we made it work there and most places you do make it work. And Paul said, “but you can get what you eat anywhere.” And I thought yeah, he’s right. You can get into supermarkets you can get fruit and vegetables and rice and beans and everything you want but you have to have some way you can actually prepare that if you’re going to so that’s the other trick has to find places with a kitchen or at least knives and forks and spoons and bowls so that you can eat in if you’re traveling.

 

Geoff Allix  09:54

And when did you start to see benefits of following OMS

 

Rachel Knight  10:00

Well, I had my symptoms even after the second attack when I was diagnosed, resolved within about six weeks, I was put on a course of steroids. And most of the symptoms resolved quite quickly. But I think the main symptom, main effect I’ve seen is that I haven’t had any relapses in the last four years, or any worsening of any symptoms that are residual from that attack. And my overall health has been better than ever. No, I don’t think I’ve had a cold or a cough in three years, I haven’t had my blood pressure and my I’ve had a blood test and everything in that come back. As wanted by the doctors, so it’s just been a matter of giving me really, really good overall health.

Geoff Allix  10:59

That’s what I find whenever I get a checkup. They always say, “Oh, you’re you’re amazingly healthy, and everything’s brilliant.” It’s like, well, and apart from the obvious the reason I’m here, I’ve actually got a critical illness. You’ve got apart from blood pressures, brilliant, and all these things like everything else. Brilliant. But yeah.

Rachel Knight  11:24

Yeah, I apologize to going to the GP to say “Could I have my bloodwork done?” Because I don’t really feel very ill, you know, there’s nothing wrong with me. “Would you mind just taking my labs, please?” And yeah, it’s fine. Okay.

 

Geoff Allix  11:37

Yeah. Good. But I mean, it is apart from anything else. It’s a healthy lifestyle. You know, and actually, it’s not just MS. We also would probably rather not get heart disease and other cancer. That’s what my neurologist said. He said, It’s unproven for MS. But actually, there’s a lot of evidence, and it will certainly help you for all the other Western illnesses for heart disease, cancer, diabetes. So eating a plant based whole food diet is good for you.

Rachel Knight  12:12

Yes, can’t harm might help.

 

Geoff Allix  12:15

Yeah. And we’re talking this month about volunteering, and you’re a valuable member of the OMS community as the ambassador for the Hawke’s Bay OMS Circle. So could you tell us a bit about that, what that involves?

 

Rachel Knight  12:31

Yeah, after a year or so after I’d come back from the retreat, I felt I wanted to meet other people and keep in touch with other people who were following this lifestyle. And I looked around there were two other circles in New Zealand, but neither of them were close by. So I thought, well, I’ll volunteer to be ambassador. And even the circle in Hawke’s Bay is relatively geographically spread. So there’s a couple close spot a couple of other people in it close by, but we’re, we haven’t actually met as a group yet. Although when I visited the places that some of the other members are, I’ve kept met up with them individually. And we’ve got a WhatsApp group. So it’s, it’s a small group, and it’s there for people who want to join us. And we’ll build it as as it needs to build.

 

Geoff Allix  13:31

So quite apart from the Coronavirus thing, because of your geographical nature, you’ve always been a bit dispersed and that you’ve done a lot things.

 

Rachel Knight  13:40

Even with that, yeah, that but maybe it makes doing things on Zoom or WhatsApp, easier for people because we’ve got used to it doing everything by

 

Geoff Allix  13:50

Yeah. And the other thing you do is contribute recipes to the OMS. website. And you’ve mentioned food a couple of types of foods, obviously, of interest to you. So what does that entails creating all the recipes that you do?

 

Rachel Knight  14:06

Well, I do create some recipes for the website. I also test other people’s recipes, and I’m assuming somebody else tests mine. So basically to test, you make the recipe that somebody else has contributed, which is interesting in itself. For example, I’m part of a vegan potluck group locally and I made one of the recipes that somebody else had contributed. And it was the dish that I took to that potluck group and it went down really well. So that’s a tick, but also it’s about checking that you’ve got the right terminology for the US versus UK. Ingredients so eggplant or aubergine, cilantro or coriander or scallions or spring onions. So that sort of terminology. And also checking that it works, checking that all the ingredients that are listed, for example, have been used and describe it in the method. So and that it tastes good. But that’s a bit subjective, but at least that it works. So that’s the idea.

 

Geoff Allix  15:18

Pre COVID times I used to travel to America a lot with work, and which is actually America is typically quite a good place for dietary requirements. I think everyone in America has got some sort of dietary requirements. And so restaurants are absolutely fine with it. But yes, it’s the ingredients is that we speak the same language, but your ingredients I sometimes you think I’ve no idea literally, that could turn up and be beef or a green vegetable, it kind of sounds like it should be a green vegetable from what the dish has, but, but you have to check and you’re gonna go in, and it’s just something completely normal for a different name for everything. So another thing just to sort of finish up on a personal note, do you have any unusual interests or hobbies that you could tell us about things that you might do at the weekend or what

 

Rachel Knight  16:14

One of my first jobs at school was to work in a fabric store in Chester. And I’m still making many of my own clothes. So that’s an interest that has stayed with me over the years. And last weekend, we went to see Ben Elton, in on live in Napier locally. So he’s, you may be familiar with him. He’s a comedian from the UK, but now living in most Western Australia. And he was a screenwriter for Blackadder, and all those sorts of things. So and then the next night, we went to a dinner put on by a local cafe. It was a set course I would call it a banquet. So that was a wholey plant-based set dinner, and you sat at a table of 20 people, we didn’t know any of the others there. But you went and had a communal dinner, which was delicious. So that was two events for last weekend. Enjoyable.

 

Geoff Allix  17:20

That’s a foreign sounding experience to me in the UK.

 

Rachel Knight  17:23

Yeah. Well, I don’t want to brag about those things.

 

Geoff Allix  17:27

Being with 20 other people and actually going to see a comedian live or both happening. Yeah. My wife and daughter that she did go to a show last night in London. But it was all it was a live show. They just had to sort of spread out the audience. And it starts with slowly starting to get back to normality.

 

Rachel Knight  17:50

Have you been to can you go to watch soccer matches yet?

 

Geoff Allix  17:54

The reduced capacity? Yes.

 

Rachel Knight  17:57

Right. Because the Black Caps are just starting here. Cricket.

 

Geoff Allix  18:03

Yes, then people know exactly when we record this now. Well, that’s only a small part, a very small proportion of the of the worldwide audience will know what we’re talking about.

 

Rachel Knight  18:14

They had to delay the training start in Southampton due to rain. Yes. But hopefully there’ll be sun will shine on them all.

 

Geoff Allix  18:26

Yeah. And just as a final point. So if you could tap into your experience of MS and OMS, for any nuggets of wisdom to give to people newly adopting the program, what would that advice be?

 

Rachel Knight  18:43

Somebody told me early on to keep a symptom diary. And I’m really pleased that I did. Because it’s very easy to forget what happened, when and how long it goes on for. And some of the things that you think might be symptoms turn out just to be spurious. Things that happen and others are quite significant. But when you if you end up end up going to see a neurologist, it’s really helpful to have a record of what happened when, and sometimes you think things have been going on for a long time. And actually, they haven’t been going on that long at all. So it’s pluses and minuses. And the other thing, I think, is it’s as I’ve got further along with following this program, it’s to trust that it works and not be distracted by other things, but just stick to the basics because it’s, it’s quite boring just to take your vitamin D every day and your flex oil every day and eat the same what to stick to a diet that’s prescribed, but it’s very tempting to get to run off in all directions chasing the next new shiny thing that might work. it, but actually sticking to the pillars of OMS is probably all we need to do.

Geoff Allix  20:09

Okay, thank you very much for joining us, Rachel.

 

Rachel Knight  20:11

No, thank you very much.

 

Geoff Allix  20:14

Thank you for listening to this episode of living well with MS. Coffee Break, please check out this episode shownotes at overcoming ms.org/podcast You’ll find all sorts of useful links and bonus information there. If you’d like to be featured in a future Coffee Break episode or have any suggestions, please email us at [email protected] You can also subscribe to the show on your favorite podcast platform so you never miss an episode. Living well with MS Coffee Break is kindly supported by a grant from the happy charitable trust. If you’d like to support the Overcoming MS charity and help keep our podcast advertising free. You can donate online at overcomingms.org/donate Thank you for your support. Living well with MS. Coffee Break is produced by Overcoming MS. The world’s leading multiple sclerosis healthy lifestyle charity. We are here to help inform support and empower everyone affected by MS. To find out more and subscribe to our E-newsletter. Please visit visit our website at overcoming ms.org. Thanks again for tuning in and see you next time