Welcome And Accessibility Descriptions

Speaker 0:01

When some days get a little tough, we'll help you find that song and lift you up to get you through the sunflower blue.

Chantal 0:19

Welcome to the Sunflower Conversations. I am your host and my name is Chantal. And today we are going to be talking about motor neuron disease. Joining me on today's podcast is Pauline Matheson Marks and Joff Machel. Pauline is coming to the conversation from the MND Association, so lots of experience, and she's going to help to guide us through what motor neural disease is. And Joff is joining us from the perspective of lived experience. So thank you both for joining us on the Sunflower Conversations. I'm going to give a brief visual description for accessibility. I am a female with brown skin. I'm middle-aged. I have long brown curly hair. I am wearing glasses and I have a white sunflower, proud to support Lanyard on, and I have some plants behind me. Pauline, would you like to go next? Yeah, sure.

Pauline 1:24

So I'm middle-aged female, um, with blonde hair, green eyes, a pink t-shirt, and I'm in a green room. Beautiful, thank you.

Joff 1:37

Um so I'm 56, male. I've got a sort of gingery camera hair, glasses, lots of freckles, and a very flowerish uh blue and white room.

Chantal 1:55

It's actually the same colour that we're just decorating one of our rooms in, is that um is that blue. And the green that you've got there, Pauline, is what I'm thinking to decorate one of my other rooms in. So we have must have very similar taste in uh in colours. Okay, so let's begin. MND is the acronym or the short term for motor neuron disease, which affects the nerves known as

What Motor Neurone Disease Means

Chantal 2:25

motor neurons. These nerves are found in the brain and spinal cord, and they help to tell your muscles what to do. That's an extract from the MND Association's website. So, first of all, Pauline, please, I want to come to you. Could you expand a little bit more about what MND is and are there different types of it?

Pauline 2:44

Yeah, absolutely. So MND is a progressive neurological condition that affects the brain and spinal cord. Um so very similar to how you've described it, Chantal. Everybody with MND experiences it in completely different ways. Um, so initial symptoms for some could be mobility issues. So that might, you know, somebody might struggle perhaps to pick something up or find that their grip has changed, or maybe they're finding that they're tripping up more, or just tripping up, that's maybe something that they've not experienced before. Um, and for other people, it can be your speech that's affected first. So very different for different people. MND itself is considered to be an umbrella term for a number of diseases. Um generally, more than half of people diagnosed with MND will die within two years of diagnosis, um, but some people will live for longer than that. Um, there's a type of MND called PLS, um, and some people may live with PLS for 10, 15 or longer. In America, MND is known as ALS or Luke Gehrig's disease. Um, in parts of Europe, you also sometimes hear reference to ALS but not MND.

Chantal 3:58

Thanks for that, because this podcast is global and and so having that um difference explained is really helpful, and I'll make sure I'll use those terms in the in the description of the podcast so that when we have audiences from uh outside of the UK listening, that they they they know that this is the podcast for them if they're interested in this topic. I guess, Joff, if you wouldn't mind if I could just come to you, if I could ask you what were your first symptoms

First Symptoms And The Long Diagnosis

Chantal 4:30

at the beginning of we started the podcast, you said to me that your speech is is slurred now. So it'll be interesting to find out what your symptoms were at the beginning.

Joff 4:41

Yeah, well, first things first, Chantal, thank you so much to you and the Hidden Disabilities team for covering Emily and raising the profile of this really horrible disease. So I am extremely grateful to you all. Um, it was about a year and a bit ago, about February 2025, I was on a skiing holiday with lots of friends, and it did involve a bit of Abraski, a bit of fancy dress, a bit of dancing, and one or two little drinking booze. But if you both started saying, Joff, what are you doing in drinking? Your speech is so funny. And in my mind, I was finding it more difficult to form my words. Now that's called dysaphria. And then when I went back to work, those questions by friends continued, especially during phone calls with old friends that knew me very well. And then I worked where I worked as an orthodontist, straightening teeth. Whilst I could continue to do the fine most skills, say my work, I was finding it hard typing up my notes. My typing slowed down and I started making lots of typos, so I I sought help from my GP and there when we embarked on a long journey of discovery. There isn't a simple single test where the blood cells are you got MND. It's more of a ruling things out. Now, the cause of third speech are many, but none of them are very nice. It's things like head trauma, stroke, brain tumor, MS, maybe Lyme disease, or MND. And obviously, you do a bit of a research yourself. So I I have that list in the back of my mind, and as the journey went on, I had lots of blood tests, MRI scans, loads of points for different people, and they started to tick off the things that it wasn't. So I was very relieved it wasn't a brain tumor, and they said it wasn't a stroke because the scam was clear. But I started the spectrum of MND was definitely there in the back of my mind. Um I did get some hope at one point because I tested positive for Lyme disease. I used to keep alpacas and animals out some fields where I live. And I thought the blood test showed that I might have been by a tick, and that can cause something called Lyme neuroproliosis, which can cause slurred speech. But as the test went on, they did did a lumbar puncture and muscle conduction test, and then unfortunately in October they confirmed that indeed it was MND. And it was very important, Inshanta, because that same week um I turned on the news and Lewis Moody was there with his wife Annie on the BBC News saying that he had just been diagnosed too. So it was a very tough time.

Chantal 8:38

I can imagine. And you're you said you're 56. So that seems to me to be quite young. Pauline, is that in terms of each range of when it occurs? Is there any statistics around that? And is it a genetic disorder? Does it is there a prevalence stronger towards men or women? What do we know about it?

Pauline 9:02

Yeah, so I mean, we know that MND

Risk Factors Genetics Research

Pauline 9:05

affects people from all backgrounds of all ages. Um, there is more of a prevalence in men, only slightly more. And that's just based on on the information of about the people that we know living with MND. A person's risk of developing the disease increases as they get older. And when I think about the people that we're supporting, we're supporting more people over the age of 60 than under the age of 60. But as I said, you know, it affects people of all ages. Because you're increased because your risk increases as you get older, even though that would explain why we're supporting more people over the age of 60. But as I say, because of the fact it can affect anybody of any background of any age. You know, we see that whole spectrum, um, you know, sort of the late teens to you know, people living in their 90s and everybody.

Chantal 9:58

So t teen teens can also get it. And it's like not a genetic, it's not any it's not genetics.

Pauline 10:07

There are types of MND which are familial, um, so they are genetic, but that accounts for quite a small percentage of of total cases of MND. Um I mean, there is a lot of of research which is underway just in terms of trying to understand why it occurs. Um and there's lots of work to try and kind of unpack that, but you know, we still don't know exactly why it happens in terms of is it environmental, is it lifestyle, is it specific genes, is there a predisposition? Um it's just a really complex and difficult disease.

Chantal 10:47

That's something that MND Association is involved in with research.

Pauline 10:52

Yeah. Yeah. There's a lot of research and there's been a lot of progress made in research over the past 10 years to try and understand what some of the specific causes might be and to try and understand, you know, treatments, you know, what treatments might be available. Um, and the vision, you know, the vision which we're working towards is a world free from MNDs. So there's a lot of investment going into being able to realise that.

Chantal 11:18

Thank you. And Geoff, so you were an orthodontist. Your the typing was difficult, but you were still able to work. Are you still working now?

Joff 11:29

No, I stopped in um November last year actually, because um, you know, my balance is not quite as good as it was. Um, I'm a bit more um staircases I have to be very careful. And recently

Living With MND And Finding Joy

Joff 11:50

I have been having a few falls. So I took the decision, bearing in mind that there was unfortunately no cure. And in your use of words, your your time is limited, but I just thought I need to spend that precious time with my family and my two children, Emmer and Alexander, and my friends. Um, but I also thought I I was very lucky, I've got some lovely colleagues who looked after my patients for. So I thought this is a really good opportunity for me to try and do something positive to help the MND Association try to raise raise awareness. So in the future, hopefully, this isn't gonna be an issue for people. Everyone thinks MND is a very rare disease, but Jordan poured in earlier. It affects about one in three hundred people in their lifetime, and that is a very scary number because you know you go and watch a movie, could easily be 300 people in that room. You think, well, it could be me. So the good news is there is a massive community of people keen to fight MBD. There's been some very high profile cases. I mean, everyone knows the great anatomy at uh Eric Dane, who very sadly died recently, and there was an amazing Rubby D player, Rob Barrow, who was incredibly brave, and his best friend, Kevin Sinfield, is doing incredible things. He's raised 14 million pounds, marathons. But if you look around, there are so many people doing bike rides, walks. One of my past treated felt pretty sad when he heard about me. So he baked the cupcakes and raised quite a lot of money with his friends. And it's that kind of stuff that made you realize how strong this sense of love and community is, and how commissive people are to try and battle this disease. It really is horrible.

Chantal 14:36

When the symptoms first occurred was when you were skiing, which sounds like a fabulous experience. Um, you obviously worked really hard, you were able to participate in in really nice activities. Has this, what you're going through, taught you some things about yourself and your resilience, or have you been on one hell of a roller coaster journey?

Joff 15:04

I've always been really, really active, Chantaln. I love, I was very lucky, I love my job. Also, I love swimming. Two and a half years ago I swam the 11-length, 11-mile length of late winter here for a different charity, and that took six and a half hours. I always used to spend all my time at the beach surfing with my friends and um, you know, like all sorts of sports, you know, running, cycling, and um snowboard is my big passion. But I can't do that anymore, even if I wouldn't dare try and run, because I'd be like a scarecrow, I'd I'd fall over in a heap. So I thought rather than dwelling on what I can't do, let's figure out what I can do. And I can still spend lots of lovely time with family and friends. It's my birthday last weekend, we had a big get together, we'll dress up in Hawaiian outfits, and that was brilliant. I can go for a a slow walk with my wife and my family. Loved wildlife and nature nature, flowers and birds and being outside and going to the beach. And I can do little dips in the water. I can do a long swim. But I've been trying to do some chili dips in funny places to to raise money for the association, and that has been brilliant fun. So an answer in a very long window answer to a short question. I'm still having fun. Um enjoying life, and if I can put something back while I still can, then that will give me hope for other people.

Chantal 17:20

It's such a it's such a positive outlook and approach to living with this and the fact that your everyone around you is really supportive, your your clients, the patients, and obviously your family and friends. Um yeah, it's you must be such, I don't like to use this word, um, but you must be such an inspiration to everybody around you for how you have come to be living with this on daily.

Joff 17:59

Well, I mean I I just feel really privileged. Literally, I think the nature of the disease is such that everyone I know and people that don't know literally all gather around like a giant team. So where I used to work, it was called Exoorthorontics in Exo Endeavor. The manager of the practice, Terry Goldsmith, she's organized a massive break walk this weekend um from uh Exeter to Exmouth, and loads of people are doing bike rides and fun stuff. It is like an amazing community of people with one aiming in mind, and that's uh um until the secure, there's the there's you know, there's no finish line. Yeah.

Chantal 18:58

And um, and that's it, it's building a community. And um a lot of podcasts that I interview or chat with people about their disabilities, no matter what they are, one of the things that comes out a lot is um after diagnosis or even before diagnosis, but living with something that is impacting on a on a daily basis can be incredibly isolating. And that need actually to reduce the isolation, how that improves the outlook, you know, like three six sticks. So to know that you're not alone and you're bringing people together or you're connecting with other people who are living with the same challenges, is something that is incredibly important. And I think charities such as MND Association, who are able to kind of be a linchpin in helping to support patients and their families, are in are crucial, aren't they?

Joff 20:00

They're really brilliant charities. I can't tell you, Shandra. One of the things they do that I found really, really helpful is they have this um regular meetings where you can have Zoom meetings and face-face with other sufferers. And I really, really made a point of trying to meet lots of people with MND. And what comes across is the strength, the resilience, the humor, people from all ages or backgrounds, they're faced with this awful diagnosis, but they are laughing, joking, and doing their best, you know. And, you know, I will think you tell on the TV, you tell on the news, and you read about what's happened in the world and conflict and war, and you only overhear the bad things. What MND has taught me is the vast majority of people are really, really, really lovely, kind, loving, giving. And we only hear about the bad stuff, but I think letting go of toxicity and hate and focus on love. And I mean, I've had more hugs in the last six months than I've ever had. And um it's you know, a smile or a hug makes you feel so good. So I think turn off the news, have a hug instead.

Chantal 21:47

I think we both agree with that, don't we, Pauline? My goodness. That's uh we should have you as the you should you should be the anchor newsman, II. At lea st turn the fortunes of the whole world around. You are listening to the Sunflower Conversations. Remember

Fundraising And Everyday Matters Campaign

Chantal 22:05

to hit subscribe. We know another um another individual, um, his name's Kirk Gittens, who we're we have quite a close affiliation with at the Sunflower here, who's also got motor neuron disease, and we're participating in a bungee jump um to support him with fundraising efforts. Is an understatement. So, anybody listening to this, please go on to the MND Association website afterwards because they have a donate page and it all goes into the same pot. So, whether it's supporting Joff and his friends and colleagues on long walks and ski swims or whatever it might be, um the big reason that this is being done to continue with research, etc. So, one of the things I wanted to ask is about the everyday matters campaign and why can you explain why it's called that and what's the purpose of the campaign?

Pauline 23:06

Yeah, absolutely. And I have to say, having just um listened to you, Joe, I think you really embody everyday matters. You know, if there was ever a kind of bringing it to life, you absolutely, you absolutely have. Um, but I guess just in terms of you know the context behind everyday matters. So the brand hadn't been reviewed for about 10 years. So it felt like, you know, now was an opportunity to really have something impactful. Um, and you know, we heard from the community that we needed to be more urgent, bolder, and work faster. Because, you know, for people with MND, time isn't on their side. So there was a lot of listening to the community, actually. What do you need from us? And how can we be as impactful as possible? And through that process, it really came through how precious every day is. And and that theme was a recurring theme in terms of everyday matters. So that really is like the core of the new brand. Um, and it's a really good way of us as an association representing a community. So we've listened to what they've said, but I think it also holds us to account in terms of that commitment to making sure that every day does matter through you know the support we provide, the information that we provide. Um, you know, we're raising funds that are actually making a really tangible difference. So that's a little bit of the background and context.

Chantal 24:31

It's a great name. I mean, it's it's impactful,

Hidden Disability Sunflower In Public

Chantal 24:35

it's straight to the heart of it, isn't it? Um, and I want to ask what your views are about the hidden disability sunflower. Um, and I'd like to ask both of you about that because you're coming from lived experience and then also from professional experience of calling. What are your views of the sunflower?

Pauline 24:58

Yeah, I mean, I think it's really important for people to feel recognized and understood when they're going about their daily life. Um, and just, you know, reflecting on what Joff shared and also kind of my experience over the past 13 years of being at the association. Um, but some of the challenges that people with MND experience, you know, such as with speech. Um, you know, we've had anecdotally that people have been accused of perhaps being drunk or because because of their speech being slurred or being unsteady on their feet. And I think having something really distinctive, like the Son of Florida, because it's instantly recognisable, um, helps people who understand what that is. And I think it's become quite mainstream in terms of it being so recognizable. So seeing that on an individual, you know, immediately you understand it. They might need a little bit more time, a little bit more support. Um and I think it just opened your eyes to actually, I need to support that person in a way that is going to be the best for them. I think as a bit of an add-on, um, we signed up to the communication access symbol, um, which is an initiative for organisations to sign up to. Um in what it means, if an organization has signed up to the communication access um scheme, they're including an NR directory and we've got some information, sometimes it's displayed outside of shops. Um, not everybody's signed up to that. So I think with the Sunflower um lanyard, that really complements that because of it being so instantly recognizable.

Joff 26:32

Um I agree with you, Pauline. I mean, I think the lanyard is so valuable, it really is. I mean, I'm at the point now where I do sound very strange when I speak in shops and um on the telephone I'm having to try to explain why I'm speaking that way, because uh I do sound like I've been drinking, and many of the the signs that I'm displaying, I walk along and I'm tottering around and bumping into things, and um I have fallen over quite a lot of times, so I'm a bit bruised and sore when I'm at that stage where I'm still walking, I'm not in a wheelchair, but obviously it's a matter of time if I will need some additional support. So if I'm in a public place, if I can wear my sunfly yard, that is me so valuable to uh let people know this guy give me a little bit of room and the way he's walking and talking is due to something else. Certainly when I was working poorly, um I found it was really helpful, especially after COVID. Lots and lots of my teenage patients with lambs due to anxiety or autism or EDHD or that kind of thing. And it was so helpful for me as a clinician. Just think be kind, take a bit longer, be understanding. And with that, I would say, Chantalr, you're doing a brilliant job with hidden disabilities, but I think more could be done in terms of promoting what you're doing, letting people know more about the great work that you're doing to educate the general public, to people have more understanding and empathy.

Chantal 28:51

How it works, Joff, is that your orthodontist practice, they can join, become a member, then they get access to the training and resources. And the idea is that each business charity organization that joins shares our training with all of their colleagues and their volunteers. So then they then become a sunflower-friendly member. And then then obviously, because of the statistics of hidden disabilities, non-visible disabilities, everyone in some shape or form will be impacted, whether it's themselves, a family member, a colleague, a friend, a neighbor. So it then it just swells, and that's how knowledge and awareness of it is is growing and expanding. I mean, it's in over 340 airports globally now, where it's just started off at Gatwick in 2016, 10 years ago. We are on a mission with your help and this podcast, and the MND Association are going to become sunflower members as well. Um, so that everybody, when they see that little symbol, whether that somebody's wearing it as a lanyard with a big sign around their neck or they've just got a discrete pin badge, everybody will know this person has a non-visible disability. I'm not going to judge, I'm going to give an offer of support, I'm going to be give extra time, be patient and understanding. You know, it's it it it's not uh it's not difficult. It's really not difficult.

Pauline 30:26

And I think as well, so you know, as an association, we provide like prompt cards and a wristband, but you know, some people might not want to disclose the fact they have MND, they just want to have a little bit of extra space and a bit of extra time and you know extra support, you know, whether that's you know, they're in a shop or an airport or whatever the setting might be. So I think because it is, you know, instantly and globally, you know, recognized, it just means that you can kind of go about your day, you know, with the lanyard or like the pin badge without having to kind of explain yourself, I suppose, as I think that's really important for some people.

Joff 31:03

The logo's beautiful, it radiates positivity, and you know, it's a light, bright, easily recognizable symbol. Um, I think you've got to buy it in the right way. I think it's a really, really good thing. I've gone on to get one of these digital cards.

Chantal 31:27

Are you gonna get a digital one, the sunflower extra? Perfect. So then you it really does remove the need for doing any talking or explaining that they're excellent.

Joff 31:36

Um Thank you.

Chantal 31:37

So emotional and practical support must be crucial to the lived experience and outcomes

MND Association Support And Voice Banking

Chantal 31:45

for families. What type of support do MND Association provide, Pauline?

Pauline 31:51

Okay, so we provide support in a number of different ways through a number of different channels. And Joff, you've already shared a little bit of your experience of the support groups, um, which have been both in person and online. We also provide support over the phone through our helpline MND Connect. So we have a huge amount of information and literature, um, and you know, online isn't for everybody, so it's very much, you know, we can provide hard copies of information for people really quickly, really easily. Um, there's information for family members, for children, young people, as well as people who are living with MND. We've got our local support, um, as Joss alluded to. So we've got networks of branches and groups across England, Wales, and Northern Ireland. Um, in some areas, we've got association visitor volunteers who might provide some additional befriending support. So that could be over the phone, it could be, you know, Teams calls, it might be, you know, meeting in the garden centre, having a coffee. Um, we've introduced new groups. So, again, based on people's experience of living with M ⁇ D, you know, there's there was a new group introduced, I think it was year before last, for people with M ⁇ D who are still working. So a community that people can come in and meet and share their experiences of what's working and what's not working, and you know, get some of that peer support. We also provide financial support, so we've got an extensive financial support programme which covers well-being. So that might be contributions towards holidays, hobbies, um, it might be you know something in your garden, it could be complementary therapy. That support's available for people with M ⁇ D, but also their carers and children. We provide support for everyday living, so that could be equipment, it could be contributions towards adaptations. So it's really designed to work, um, I suppose, and complement what's available through the NHS. We also provide support through technology and innovation. So, again, designed to complement what's available through the NHS. So it could be um some funding if somebody wanted to be able to bank their voice. So banking your voice, you record a number of phrases, um, and then you're able to download that onto it, might be an iPad, and then the output is is a synthetic synthetic version of your voice, but the technology's moved on to a point where some of the voices are absolutely amazing. You wouldn't tell that it was synthetic. It sounds so good.

Chantal 34:19

You can use that as a communication aid. Absolutely that you can uh talk to people via the uh tablet or whatever the digital devices.

Pauline 34:30

Absolutely. And you're talking in your voice, and the technology's moved on to a point where some of the systems get the intonation and you know picks up your accent, and yeah, it's how that's moved on is absolutely incredible. So we provide funding towards that, and also cost of living, you know, has been and will continue to be, you know, a real challenge. So we provide support there as well. We've also got a benefits advice service. We've got the online forum, so that's available 24 hours a day, and you know, as a really good source of peer support and information. Um, it's really important as well to mention, you know, the support for families, for children. We've got counselling available through our partnership with Bernardo's. Um, the team will also work with schools to give them a bit of information and support. So if they've got a pupil whose family member has MND, they're able to, my team can talk to the school about some of the strategies that they might want to put in place, which can be really, really, really helpful. We've also got our memory boxes and treasure boxes for children and the team the support's also there post-bereavement. So you know, MND moves fast, it takes away time. So actually, for some people, there's so much going on that it's not until you know they lose their loved one that they think, actually, I need something for me. Um so you know, the support doesn't stop. Um, and some people, you know, like Joff, take comfort and actually take an action. So whether that's but raising money, campaigning, volunteering, you know, sometimes the support is not about what you receive, but what you give. Yes. Or, you know, a combination of everything. So yeah.

Chantal 36:11

There's a lot there. There's a lot there. And it's very comforting to actually hear how thought

Optimism Thank Yous And Next Steps

Chantal 36:20

well thought out it is to cover all aspects of the family uh for in the entire journey. Um, you're not alone uh with MND. Um, so that's really important. We'll include uh links to the MND association and uh associated uh similar charities in in other countries to the show notes so that people can seek support if they need it. Thank you both. Thank you for giving up your time to join us on the Sunflower Conversations. This podcast is going to be in existence from now until forever, whenever. So um, anybody listening to this, please share it because you're hearing it from Josh, who has lived experience. He's sharing with you what his daily life is like and why it's important that we all learn more about it and that we can all contribute to hopefully bringing an end to this disease and improving the the life chances and expectancy of people who are diagnosed with it. Geoff did you have a final word that you would like to end on?

Joff 37:36

I I wanted to say a couple of thank yous within mine. Firstly, to my wife, because she's been incredibly kind, and I think the impact on families can't be underestimated. It really truly is awful because you lose the ability to really care for yourself, which you know when you get married, don't expect that's gonna happen to your partner. So thank you to Aaron my family and to the British Orlando Society that's been incredibly kind and supportive for me and very generous in supporting the charity and supporting everyone that was the MNDA. Thank you. You're helping me say positive. And if I can help you while I'm still well enough to do so with fundraising and anything I can do, I'd love to do that. But Chantal, I'm really grateful to you for talking about MMND or ALS, putting it out there because the more conversation we can start, the more chance we got. The research is very, very exciting in MND at the moment. I went to a research day recently, and they are getting optimistic that we're gonna figure out for too long. So I think if we can lobby uh our politicians, our friends, try to really push for more funding for research, then I think in the future we will find a cure for them.

Chantal 39:31

Optimism, that's what we're ending on. Thank you, Joff. Thank you very much. Thank you, Pauline. Thank you, and thank you for the opportunity. If you enjoyed this podcast, please share it. Leave a rating and review to help raise awareness of non-visible disabilities and the hidden disability sunflower. You can also follow and subscribe to the Sunflower Conversations podcast.

Speaker 39:52

If you are interested in any of the advice discussed in this podcast, please follow up with your GP or healthcare practitioner. You don't have to say why, you just need more time. Like a field of dreams full of seeds that need love and care to grow. Those yellow petals develop the sun, giving everyone a bit of hope. When some days get a little tough, we'll help you find that sun and lift you up to get you through the sunflower.