Multiple sclerosis diagnosis to creating Talks with MS with Terri Louise Brown 

Speaker Key:

Voice Over

Chantal Boyle

Terri Louise 

Voice Over

Welcome to The Sunflower Conversations, where we explore the Hidden Disabilities Sunflower and its role in supporting people with hidden disabilities. 

Chantal (00:22)

Welcome to the Sunflower Conversations. I am your host. My name is Chantal. Joining me today is Terri Louise Brown. So we will do a little visual description of ourselves to assist anybody who has a visual or sight loss. And I'm going to go first. So I have brown skin. I am a female. I've got long brown curly hair. I wear in glasses and I'm wearing an eye support Sunflower lanyard.

Terri (00:50)

Terri. Hi, my name is Terri. I'm a darker brown skinned female. I've got a short pixie cut with slight gold highlights and I'm wearing a black v-neck t-shirt.

Chantal (01:01)

Thank you. So this is a special edition of the Sunflower Conversations because we are participating in the fourth edition of Podcast For one week, more than a thousand podcasts will highlight a charity of their choice. So it is our pleasure today to welcome Terri Louise Brown, who is the founder and CEO of Talks with MS. In this conversation, we get to know Terri.

understand a little bit about her lived experience of multiple sclerosis. And we will also learn about the condition, the motivation behind creating the charity, the practical steps to becoming a registered charity and the key takeaways. So welcome, Terri. Thank you so much. We have spoken before on the Podcasthon, haven't we? So I'm really happy that we're able to have a follow up. How are you?

Terri (01:52)

Not too bad. How you doing today?

Chantal (01:54)

Yeah, very well. Thank you. I'm really excited to be part of this Podcasthon, because it's not just in the UK, there'll be audiences from Europe as well, and Canada as well. So quite far reaching. So we're really excited to be part of this movement, which is about, you know, raising awareness of charities and their endeavors and what they're seeking to do. So let's start with our first question. What type of MS do you have and what symptoms do you experience?

Terri (02:23)

So I have multiple sclerosis relapsing remitting spinal MS, spinal because that is where the majority of my damage is. And when I was diagnosed fully, I was paralyzed from the waist down. Current symptoms, I have pins and needles in the soles of my left foot. And I have quote unquote no use or limited use of my left hand. And I frequent with an MS hug, which is almost like. It feels like someone's gripping your side, the side of your abdomen. And that can come on if I have maybe the wrong food or if I'm a little bit more stressed out than normal or if I just haven't had enough sleep. Enough sleep for me looks like about four or five hours, which isn't great. But yeah, anything outside of that, the MS hug can come. I think the longest hug I've had was for about five weeks. But the shortest has been a couple of hours and I don't normally medicate for that one.

Chantal (03:16)

And with that MS hug, that, when you say longest period is four, four, about, did say four weeks? Five weeks, sorry, very bad short term memory there. Is there any break in that sensation? No.

Terri (03:21)

Five weeks.

No, no break whatsoever. It can cause, I wouldn't say almost breathing difficulties when like walking upstairs or walking for too long for distance, because it literally feels like I normally compare it to having a brick attached to your side because it's more tension, then it's more pressure than it is pain.

Chantal (03:50)

Okay, right. Yeah, and it's always with you and then you said about your hand as well in terms. Yeah, so in terms of that, what are the sort of some of the some of the challenges and barriers that you experience? With it well with your hand you mentioned about the pins and needles in your feet, the hug What barriers does that present to you when say you want to go and do the weekly shop?

or you want to head to a meeting, if you want to socialise with your family, what kind of barriers do you face?

Terri (04:24)

So more recently, I have noticed that my balance does its own thing. Sorry, does its own thing. Whereas I used to be a lot more cautious of how I walk. Now I could be as cautious as I like if I'm gonna have a slight, oopsie, to the side, it's gonna happen. And with my hand, think the main thing, nine times out of 10, when I wake up in the morning, I do like my finger stretches just to see if I'm having a good hand day or a bad hand day.

The biggest things that cause barriers is like maybe zipping up something or tying a shoelace or putting like the butterflies on my earrings because there's limited feeling. So anything that I do go to pick up or interact with when it comes to my hand, I have to be looking at it. If it's an object, I have to be looking at it. Otherwise my hands will just dance around. Because I've had this symptom for close to 10 years now, I've kind of learned to live with it and I've learned to adapt.

And yeah, I know how to mask it in a sense as well as just the unknown I would never know unless I say, right, this hand doesn't really do anything, my nails don't grow, but I make sure my nails are always done.

Wow.

On the other hand, yeah, full growth on the other hand, but this hand, there's limited nail growth. It gets to a point and then it stops. My nails grow really, really long because these are mine on this hand. But yeah, on my left hand, not so much.

Chantal (05:48)

Terri's got beautifully manicured nails and they're quite long, they're all perfect and they've got little love hearts on them, think, aren't they? Very, very nice, very cute. That's really interesting and it's just in your hand, so it's not like on the same side like with your toenails on that side.

Terri (06:09)

It's just my hand. normally with people with multiple sclerosis, all their damage is on their left side. And it's the same for me. All my main damage is on my left side. So the foot bottom, I've got an impingement with my knee, but that came from years of being like that sporty kid. And then obviously the hand situation all down my left side.

Chantal (06:30)

Do you get the, is it drop foot?

Terri (06:33)

So I'm really bad so I do know the symptoms but because I'm such a go go go go person I don't always correlate them with myself. So the drop for I have experienced it before but it's not something that is frequent with me ultimately.

Chantal (06:49)

And do you do you use a walking aid to help you now that you're having a few more whoopsies as you put it, which basically means like it's a wobble where you can take a tumble over.

Terri (07:00)

Yeah,

no, I still I still am in a space where I'm not using walking aids. But I think that's because maybe I'm so hyper focused on what's happening with me. Like I want to see it in real time. So if on Monday, for example, I've only had a little oopsie once, but I have it three times on Wednesday, I want to see what the changes are. Whereas walking aids 100 % is so useful for people and it's safe.

I don't always say the safest route. I do like to study and know what's happening with me, what the changes are, why the changes might be happening. And if I'm able to maybe go back to Monday where I only had one oopsie instead of three on Wednesday, do that.

Chantal (07:51)

What was your motivation to set up Talks with MS and what's the charity's mission?

Terri (07:57)

My motivation, so every time I have any conversation my brother always comes up. So he's been diagnosed with MS is going to be 17 years in September now and ultimately when he was diagnosed there wasn't enough for people that looked like us. Yes there was the bigger mainstream charities but ultimately when something's so big you do sometimes can become just a number.

And I wanted to create something where people felt seen and heard and not just another sign up or another email address or another bit of data. I genuinely wanted to create a safe space for people where it was deemed as almost the big brother, big sister, where people could talk to real people going through the exact same thing and maybe not just... a larger charity straight organisation that has obviously done the research and know what the disease is and hired a ton of people. But I needed people with lived experience to talk to people with lived experience because I felt like that was so important. And ultimately, when I put my diagnosis out on Facebook, how nearly 10 years ago, that was one of the biggest things I had people flooding my inbox of my age and younger.

letting me know about the different medical situations they're going through. And I was like, wow, like these people just want to talk. And clearly there was no space to do so. And it wasn't just people with MS. I had someone with Crohn's, had someone that had cancer, RIP to Jessica. She was actually in my brother's class. And it was just like, these people have nowhere to speak, to vent their problems or even just to scream and say, me? Because that's also important. It's not always positive.

Even with the organisations and the charity, sometimes you just want to be a bitter betty because why is this happening to me? How, are we here? And ultimately that was my motivation, seeing people needing a space to conversate, seeing people needing a space to talk and creating a space that I wish my brother had. Because ultimately by the time I had created Talks with MS, it wasn't necessarily a resource he would have been able to utilise.

because he is now completely paralysed and also non-verbal. So I wanted to, even in the slightest way, help someone rid that bit of isolation, because I know he went through that isolation, hence why his situation deteriorated as quick as it did. So that's ultimately what I wanted to do. I wanted people to know there is a space, there are other people that you can talk to, there are other people that understand your screams and your whimies. Without being told, it will be okay, until there is a cure, there are, you know, disease modifying drugs and different holistic methods that can keep us balanced. But right now there's no cure. But we are definitely praying for one.

Chantal (10:40)

Well, I was actually listening to a Podcast the other day, actually, and it was talking about the health benefits of socialization of actually being with other people and the benefits of that. I don't know, I'm I'm just repeating what I heard, but they were saying that the outlook of dementia is reduced for people who have.

socialisation for older people and I think this connection and trying to remove some of the isolation because no doubt your brother's life changed extricably, yours did when you got your diagnosis and I'm sure it has been the same for a lot of people. from what your normal was and the people that you hung out with and the activities that you used to engage in without a thought.

Yeah, that's all, that's all, yeah, it's all a new, new world. Yeah. So having to have people who look like you, who maybe are around the same age as you and having similar emotions to what you're experiencing must be crucial

Terri (11:36)

Thank you.

Yeah, definitely. Even if it's not crucial to your complete healing, but even a bit of the mental, the mental wealth of yourself, because that is also important. It's yeah, it's extremely important. Like I said, it wasn't necessarily the MS that was the complete full circle as to why Dan deteriorated the way he did. And even myself even having talked to the MS and having all of those people within the community, even me having my own micro community that has made a massive impact on my journey as a founder, as someone that's also the face of a community, as someone who maybe doesn't look to the unknowing eye that they have MS and has come across people that have said, don't have it. I'm like, babe, yes I do, promise you. Not only is it on paper, I feel it every single day.

It's also very important to have micro communities and that's definitely something I encourage within the community as well.

Chantal (12:49)

Could you share some of the practical steps required to create a registered charity? Did you start off as a small community group, a Facebook group? Can you just talk us through some of those?

Terri (13:00)

I got diagnosed in March 2016. And like I said, I saw that there was a gap. And on the gap, I created a community, I call it my digital baby. I didn't necessarily go down the CIC route or anything like that. Yes, I had all my documentations to be able to call myself a charity, but obviously not then registered yet. So I had the community.

And I made sure like it grew on all social media platforms. A big break for me was during lockdown because ultimately everybody's at home. So I utilised that heavy. So done a lot on Instagram, done a lot of like Zoom calls and Zoom meetups and so on and so forth. And then after I kind of struck while the fire was hot and I'd done a meetup once we were allowed to actively have a decent amount of people in a space, done a meetup in a restaurant, in a vegan restaurant, because a lot of people went down the vegan route, especially during lockdown.

Chantal (13:56)

That's interesting. And is that in terms of trying to see whether it would help manage symptoms better?

Terri (14:01)

Yeah, so again, to your point that, so right, so veganism, clean veganism is definitely to kind of rid the toxins and the rubbish in some of the foods that are out there. Because there is a lot but then there's also the dirty side of vegan where there's a lot of the pea proteins and so on and so forth that are also chemically induced but we won't go into that because I'm not a vegan.

Chantal (14:23)

That's a whole other...

Terri (14:25)

That's a whole different world. But I chose vegan because like I said, I knew quite a few people in and around the community were vegan. And there was a bit more versatility and people wouldn't have had to feel so restricted. And then, yeah, one day, I just thought to myself, like, I've been running this quote unquote community for about six years now. What next? Like, how can I kind of increase like my bandwidth, the leverage and even just the name itself, done some more research into the whole register charity and I said, oh, it's going to take a year, really. But I remember looking at the questionnaire, I looked at the questionnaire for maybe two months because it's about, I think it was about 18 questions. Yeah, yeah, I think it was about 18 questions and I looked at it for a good few months. And then one day I just said, I'm doing it.

Chantal (15:08)

18. Yeah.

Terri (15:16)

Yeah. And I gave myself a week, I broke down the questions. So I gave myself maybe three or four questions a day. And then once I pressed submit, I had it read over by a solicitor and a few other people and I pressed submit and they came back to me and they were asking me questions and I was like, they're not going to give it to me because I do know that sometimes they can say no.

⁓ And they came back to me quite quickly. They came back to me, I think within about three and half months and I was like, ⁓ they don't want it. They're not going to give it to me. Maybe there's something like this already out there, which ultimately there is, but this may be a few different factors. And the woman, she, I remember it was a lady, she was so helpful and she kept on asking me questions. She was like, do you guys do this? And I would say yes, or I would say no. And she was like, what about this? And in my head, I didn't understand why.

she was asking me all of these questions because you really don't have to do this lady because she was really going backward and forward with me. And then by the end of the week, it was Friday the 13th. And I know it's a lot of people don't like Friday the 13th. But for me, Friday the 13th is fine, because I was in the nail shop. And yeah, I got the email to say that we was a registered charity and I didn't know how to I didn't know how to react. I had to obviously tone it down because I was near people.

⁓ But then again, that also, that was a major push for me because now I'm able to say I'm one of two black led. And while it's not about race, I always say like, make sure we're included too. And that's why Talks with MS is Talks with MS. It's not to single anybody out, but it's to ensure that everyone is included.

Chantal (16:53)

Yeah and I like your sort of the practical mental approach to the application form because clearly it was something that means a lot to you, you wanted it to be successful but it was a bit overwhelming looking at all these questions so actually just saying okay I'm just going to tackle x amount of questions each day to actually give that clear focus, what a good idea.

Terri (17:16)

Yeah, because I was working full time at the time as well. So yeah.

Chantal (17:23)

And so this is year three of the charity, right? what are your three biggest learnings so far for running a charity?

Terri (17:32)

It's triggering, especially when it's a charity based or an organisation even, based around something that you're also dealing with. It's extremely triggering because you actually know like you're not just an outsider doing it because you've got a, cause you see a need for it. Like this is actually your life that you're living through your organisation stroke charity. You will be judged.

You will be judged as much as you feel like you're doing something good, something for the community, something that people want. You can't always make people happy. And ultimately sometimes, I don't know why, but it's easier for people to be not so nice than it is to be nice.

Another thing that I've learned, I would do it all over again. When I see the impact that it's created and that it's continuing to create and the opportunities that are coming on the back of it again, yeah, I'll do it all over again just to see this happen all over again, Yeah, 100%.

Chantal (18:27)

Yeah.

Amazing. I'm sure your brother's very proud of you.

This this is the second year of the charity's Empowerment Awards. Can you explain what they are and maybe just talk us about a couple of the categories you've got in there?

Terri (18:51)

Yeah, The Empowerment Awards were created because I felt that there were people in and around the disability world that weren't getting the recognition that they deserved. Being on LinkedIn, LinkedIn's like my main social media for me. I was seeing so many people doing so many great things. I was thinking, because you see on LinkedIn, like when people get nominated for something, they always put it up. And there were so many people not putting anything up. And I thought, you know what? let me try my hand at it. And initially it was supposed to be for people in and around the MS community. But I spoke to Paul at the, I think it was the Rise for Disability event. So I just got off hosting a panel that he was on.

Chantal (19:32)

Terri's talking about Paul who's the CEO and founder of Hidden Disabilities Sunflower.

Terri (19:37)

Yes.

And I said to him, like, would you be able to partner up with us? And he said to me, while we can't do just one condition, that we have to do them all. And as crazy as I am, I said, no problem, let's do it. And at that moment, I don't know what the heck I was thinking. But I knew especially someone that is a Sunflower lanyard wearer, I knew how important it was to partner up with people and companies that are used by the community. It's super, super important and that's why the Motability Scheme, they were actually our title sponsor. But yes, with it being the second year, so the first year we made history because we're the first ever UK Disability Awards to recognise assistance dogs. That assistance dog now gets a salary from his local government because he's deemed as an integral part of the care team and people with additional needs.

So that's our spectrum-based conditions because ultimately what I had seen, especially from the Disability Awards, was that they were just boxed into hidden disabilities. And while that is true, I wanted to ensure that I was trying my hardest to meet the needs of the majority as well, because what I have seen is that ADHD is definitely becoming more frequent diagnosed at later stage in people. So I wanted to create something where everyone kind of felt seen.

⁓ And this year we are creating history again because on the back of the additional needs and the Senco, we've got the inclusive learning category. And that is to recognise the institutes and schools and the tutors and the teachers of the people in and around the SEND world purely because I know as a mum, my son was at school for more hours than he was awake at home. And those schools and those institutes and those tutors and those teachers and those assistant teachers, they ultimately help mould those children and people while they're in those places. So I felt like it was very important to shine a light on them and recognise them as well. Albeit our allies, we see you, we appreciate you and continue the amazing work that you're doing for our community. What else have we got? We've got our Tech for Good. We've got some really amazing finalists in our Tech for Good. And ultimately, massively from the fintech world as well because you know

Chantal (21:55)

Give an example for somebody doesn't know what fintech for good.

Terri (22:00)

Fintech for good. So even for example, a resource that helps you with your mobile banking. So say for example, you've got a visual impairment, we've got a particular company, a particular organisation and their product is almost a screen reader for near enough every single mobile banking app from being able to get you into your app to see in your different balances.

Chantal (22:23)

Amazing. That's really amazing. Now that really does make a tangible difference to someone. Having access to your finances and all the financial advice and support is critical.

Terri (22:35)

Yeah, definitely is. And yeah, so that was another category we included. It was there last year, but we didn't have as much coverage of it last year. So this year, people have really put in, whether it's self-nomination, because that's something that I definitely encouraged, because ultimately we don't know what we don't know. So I definitely encourage self-nomination. But yeah, we're, what, 18 days out from the awards this year. It's going to be at the Emirates Stadium.

So far when I checked this morning we've got 3494 people have voted for a finalist or finalists. a lot. It is. Yeah it's yeah this year has reached places I never expected. When I saw the army nominated themselves because they've got a major send a SEND CO

Chantal (23:13)

Well,

Terri (23:27)

area I was like ⁓ yeah like from something that came from me and my laptop and my pyjamas and I stand by that because there were days where I did not come out of pyjamas out of one into a new pair because I was just at home grafting to see like the army nominate themselves that I looked at that and I said wow tell

Chantal (23:47)

I think that is because I think we just have this impression of what the army is and what the people are like who are there which is a massive bias of course. So to know that they are nominating themselves and that they're doing positive, having positive actions in this space is really encouraging. It's really great to know and yeah, like you say, nominate yourself and get some recognition.

Terri (24:15)

Absolutely, even if it's just being nominated, I have the task, because I don't have a CRM built just yet, but every nomination that comes in with their picture, I individually create every single graphic and I love reading every nomination. Like it's genuinely so heartwarming because I'm just like, these amazing people. And when I see them post it on their LinkedIn or their Instagram and how happy it makes them, I'm like, this is why these awards were created.

These aren't ego-fuelled awards, these are definitely impact-driven awards.

Chantal (24:50)

What date is the like the.

Terri (24:52)

The voting closes on the 8th of March. It was supposed to be yesterday, however I realised that some of the finalists didn't receive emails, so we've pulled it out for an extra week, the 8th of March.

Chantal (25:05)

Great, great, great. We will be there, Paul and I will be there to award the winner of the Invisible Disability Personality of the Year. So we're both really excited about that. Love being involved. And I just wanted to just quickly say as well, I just wanted to come back to the one of the areas that you have an award for, which is the schools, which you explained. That is so important, isn't it, to have that... correct and appropriate support and nurture and tutoring because that is a make or break for everyone really. It's when you're really at your most vulnerable because you're a child, you have no choice but to go to school. And then if you have challenges which children who are non-disabled don't have, know, it's, so I think having that recognition there is so... Yes. So crucial and obviously people can say well it's your job, it's what you're paid to do but it doesn't always work out like that.

Terri (26:07)

It doesn't, it doesn't and we both know that a lot of people do jobs and aren't always good at it or are sometimes just there for the paychecks. So ultimately like having a, son's 16 now, but seeing what school can do to help mould your child, 100 % it was a no brainer. And one of our judges, he's one of the lead principals in a borough in London. So it also made sense to have the category. So there was something that aligned with his job role and the awards.

Chantal (26:40)

Okay, so we did touch on it earlier on and I just wanted to ask you a little bit about the Sunflower. So in terms, I guess really, how important do you think the Sunflower is? And for you personally, what reaction, you alluded to earlier on, what reaction perception do people have of you in terms of whether or not you have a non-visible disability?

Terri (27:05)

It's actually hilarious. So in terms of the Sunflower and it's importance, like I mentioned before, the majority of my damage is on my left side. I've got damage to the soles of my foot and also I've got a knee impingement and that comes with its whole diagnosis and a whole different pain relief method. So for me, having that Sunflower lanyard and being able to say, guys, I actually can't maybe stand in this queue for so long or I can't, I need to... maybe park a bit closer if for example, there's been a period of time where I may have forgotten my blue badge with me. Ultimately, like I said, people won't know if they don't know. I definitely feel like when people see the Sunflower lanyard on myself and on others, they kind of think, ⁓ okay. So there is something happening more than what the eye can see.

And for people that may not necessarily vocalise that they've got something wrong with them in any capacity, having a Sunflower lanyard on just kind of allows them the access to what they're actually allowed. I know many people, not myself, like listen, I will pull up my diagnosis letter because it stays on my phone because I have been in situations before where I have to prove myself.

But to those people who are maybe not in a position to even speak on their condition or what's going on with them, the Sunflower Lanyard is so important as it is a voice for them. It is that silent voice for them. So I always advocate for the Sunflower Lanyard if ever you need to use it and never be embarrassed. Like I've got my goddaughter, she is 10 now. And when she came to the awards last year and she got her Sunflower Lanyard, the only thing she didn't do was sleep in it.

And she's got she's got a hearing impairment and different additional learning needs. So for her having that Sunflower lanyard now she loves it. ⁓

Chantal (28:51)

Beautiful. That's beautiful. And I like where you were explaining some of the scenarios that you wear it, in terms of like needing to park a bit closer so that when you get out of your car, people are not looking at the vision of your body, looks, you know, yeah, it doesn't look like you're experiencing any pain or anything like that. That this Sunflower just lets them know that actually, yeah, there are. Things that you can't see and just bring down the judgment.

Terri (29:22)

The ignorance, that's what I found. It kind of reads a bit of the ignorance because they look at you and they're like, are you supposed to be wearing this? Are you wearing this? But then at the same time, a lot of people won't ask. They just see it and take it for face value.

Chantal (29:37)

Yes, because what we say is, do you need any support, do you need any help, but never to get somebody to validate why they're wearing it or what their disability is, so, that's lovely. So, how can individuals and their families contact, Talks with MS if they need some support to reach out to your charity? It's UK based, right?

Terri (30:03)

Yeah, are, I want to say, yeah, we are UK based, but we are definitely global. So it's, we are Talks with MS everywhere, Instagram, LinkedIn and Facebook. Or we've got our website, which is www.talkswithms.co.uk. And there's a contact form on there where you can leave us your email address or your phone number if you want, and just a quick message and we will always get back to you.

Or yeah, we've got an email address, which is info@talkswithms.co.uk Or if you see me on the street.

Chantal (30:33)

That's fabulous, that's fabulous. the type of support that you are offering to people and their families with MS constitutes connection, what other kind of services are you?

Terri (30:47)

So from webinars to in-person events, we are starting our men's group and we've got our women's group. We've got a WhatsApp channel, we've got a Facebook group chat. Like I said, if you find my personal Instagram and you jump in the DMs, I will always reply. It's always funny to me when people say, you replied. I'm like, you messaged me so, yeah I did, I did. But yeah, one thing we do do over here is communicate because like I said I know what isolation looks like and I know what the, I don't want to say the end game but I know what isolation can end with so I will always try my best so the team will always try their best to get back to people.

Chantal (31:28)

And that is a perfect place to conclude our conversation on the Sunflower Conversations today. Thank you so much, Terri. And yeah, this wraps up our special episode as part of Podcasthon If you enjoyed it, please leave a comment and rating and importantly share it to help spread the word about Talks with MS and Podcasthon them because there'll be some other episodes on there that will be of interest to you.

You can visit Podcasthon on www.podcasthon, which is like marathon, but with pod instead, dot org to discover hundreds of other charities and their causes through the voices and talents of amazing podcasters. So have an amazing day. Thank you very much, Terri.

Terri (32:17)

Thank you for having me, Chantal.

Voice Over

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