On the tip of my tongue Series 2 Episode 5 - Colin Lyall, founder of Say Aphasia

On the tip of my tongue S2 E5: Discover the journey of overcoming aphasia—a rare look within as the fog lifts, and life begins anew. Tune in to our latest episode to hear Colin Lyall's inspiring story.

Say Aphasia

The Say Aphasia Charity provides supportive drop-in groups for people with aphasia in the UK. It is run by people with aphasia for people with aphasia.

Aphasia is not a well known condition and so people with this communication disability can feel alone and isolated from their community.

Our aim is to provide continuous support in a social environment with people who are experiencing similar life changes.

Our charity makes a difference to people living with aphasia by:

• Offering companionship and support
• Helping to adjust to living with aphasia.
• Meeting people who are experiencing a similar life change.
• Making new life long friends.
• Gaining tips and advice from others with aphasia.
• Gaining confidence to socialise and communicate as best they can.
• Re-gaining independence as much as they can.
• Helping to reduce loneliness.
• Providing support in a relaxed and welcoming environment.
• Offering art class and singing class as a therapeutic way to relax and express themselves.

#AphasiaAwareness 

#StrokeRecovery 

#SayAphasia


https://www.sayaphasia.org

Transcript

Podcast S2 E5 - Colin Lyall, Founder of Say Aphasia

Colin Lyall: There's a really nice word that I like with people with aphasia after their stroke or other brain injury. It's like there's a fog lifted and that fog could be, you know, a couple of months or a couple of years, you know, you never know. But once your fog is lifted, you realize that, wow, there's, this is going to be my new, my new life. 

Colin Lyall: My name is Colin Lyle. I'm the founder for Say Aphasia charity, and I've been doing this for about eight years now.  

Well, thanks Colin. Thanks for coming on the Tip of My Tongue podcast.  

So Colin, how did you get aphasia? What's your story? I had a stroke about 11 years ago. I was, I was very stressed. The first company that I used to do, it was kind of mechanical electrical engineers in London. 

I'm in Brighton. I used to commute every day from 6 o'clock in the morning to about 10 o'clock in the evening. And what happened to me, I had a hole in the heart burst. Um, I think stress to de stress is to have alcohol, and that's what happens. So I had a massive stroke in the, in the [00:03:00] hospital. I could sort of say yes and no and lots of swear words. 

You know, my intelligence was intact, but I couldn't get any words right. And in the hospital, I didn't know I had a stroke, and I was still thinking about the company, and I was just sort of thinking that, you know, cut the wigs, I'm gonna be fine again, and it took a long time to realize that I can't, yeah. 

So what happened with your work? Did it stop or, or what? The company's still running. There was about, about 60 people in the office. It's quite small now. It's only about two, but it's still a big company. In fact, my, my two sons are still part of it. And I think when I basically, when I, when I got back home, I had, uh, speech and language therapy sort of instantly, which is pretty good. 

And I had my speech and language therapy was in my house [00:04:00] every two days for, uh, for, for, uh, for an hour, uh, one to one to try and get my words. That was about four months and I had another speech and language therapy in the hospital again for about another two or three months. So, uh, I've realized that I was just very, very lucky because, uh, you know, there's a lot of people I know in aphasia, you know, don't get speech and language therapy at all. 

And I think the company thought of when I thought it'd be good to go to the office and say, hello, you know, I had to. remember how it works in terms of getting a train, where it is, you know, completely confused. My speech is not great, but I thought, I was thinking that I can be, you know, I'll go there for two or three hours just to see anything that I could do. 

And I just thought that, you know, one day I will be sort of back to normal. It just takes [00:05:00] a long time. My, my, my words was kind of getting better. I can't read and can't write still anymore. So I did that for about, uh, six months and then realized that no, it's, it's, it's not gonna happen. And they're lovely, lovely people and you know, they like to say hello, but I think most people knew that, you know, I just can't do it. 

What sort of work did you do at the, at the, at the company we were a, a consultant for big buildings and we do all of the mechanical, electrical lists, acoustics, you know. We have conversations with the client and the architects to work out how we wanna do it. And then, and then when we decided how we're do it, then we get our builder to build to, to build it. 

And uh, you know, we're, we're used to do now big office blocks much. One of my first jobs 30 years ago must be already four years ago. Was Lombard Street, used to be, I [00:06:00] used to work there, uh, uh, Barclays, Barclays Bank. Yeah, so I used to do that, but for our company, we had, we had the clients, people like Blackstone, Blackstone, big American company. 

Uh, doing lots of buildings in, in, in London, so, and it's good, it's, it's very good. So you spent a lot of time talking to people, in your job. Absolutely. Yeah, no, it's, I was a director, you know, I have to have conversations with the clients, you know, you have to be polite. And I was just very good to get the right phrase of what we're trying to do. 

You know, you can have one conversation with the architect, the architect or the client, which is very kind of different to the conversations that you might have to have with the construction companies. Right. And so it's just, you know, I did used to like it, you know. It was, it's always stressful, but maybe I'll just, you know, you never really know when you've had a stroke like that, you always think about stress. 

I always think that [00:07:00] stress, that's the part of the job, but I think it's just that that's the way these days, and that's why there's a lifestyle, and that's where it seems to be more people who are having strokes, but also people having a stroke quite young as well. Yes. Yeah, this is what we're learning. 

I've been learning over the few years I've been doing this, is that, yes, it's not age, or people start, you know, the people with all sorts of problems at all sorts of ages, and stress, you're right, I spoke to Emma Rich on Friday, and she said exactly the same thing, you know, it's a very stressful job, and she blacked out, you know, so people get stressed. 

In different ways, but we end up in the same place. So, so how did you get from doing that to running this charity? Well, I suppose, I think it takes a long time to, it, [00:08:00] it took, I reckon it took about a year to realize what aphasia is. And I'm pretty sure the speech and language therapy would tell me that I've got aphasia, but I didn't really know what it was, but you know, when I realized I've got aphasia, I reckon about a year. 

There's a, there's a really nice word that I like with people, aphasia after their stroke or other brain injury. It's like there's a fog lifted and that, and that fog could be, you know, a couple of months or a couple of years, you know, you never know. But once your fog is lifted, you realize that, well, there's, this is gonna be my new, my new life. 

And I think one of my, one of, part of my, my fog was I had, after my stroke, I had seizures and some were quite mild and some were quite severe and I had seizures probably about, at least seizures for about two years, so roughly every six weeks to get the right, you know, drug to, [00:09:00] to, to stop, you know, I was still part of the company had Bupa or whatever it is, the company that we had. 

And so whenever I had seizures, I'd go back to this consultant and say, look, it's not, it's not quite right for me. I had another one and it took a long time. But after two years and it stopped, I could drive again. I got the right medicine where I'm, I'm always very tired, but you know, some, some of the medicine was just too tired and it's almost like, you know, the fog is lifted and now I kind of decide what, what I need to do and that's when I sort of, We, I used to go to London sometimes because there was another, a different charity called Kinect. 

So I used to go to those, their place of a big office and they had a group every Wednesday and Friday or whatever. I used to go to, to that to say hello. And then I started, I was part of their, what's the word, their, their, that every, every couple of months they [00:10:00] do a newsletter. So I used to go to the office to talk about how we want to do the, the newsletter, just to making sure that, you know, Brighton is going to be a part of it. 

So that was very good. And then I just decided to do my own charity for South Asia. So from 11 years ago, And then it was kind of about eight years ago when I decided to do this charity. Starting in Brighton. And it's in Brighton, yeah. It's quite interesting. It took a long time because obviously, you know, I still can't do reading and writing skills. 

But I had to do my own charity. So I was very lucky I had my voice recognition. So I wanted to do any, do some words about what my charity is. The voice recognition, who did it. But this is kind of eight years ago, so it wasn't easy because if it wasn't that good was it then yeah It's not the right phrase, but [00:11:00] I know it's not quite right, but I don't know why so it's all up You know have to sort of start again, so I took a long time to to do the charity I know, and I've, I've done the, I've done the paperwork for starting a charity and it's a nightmare even if you don't have anything wrong with it. 

Yeah. Yeah, so you, you did well to do that. Did you have some help? Was it just you, or? No, I had, uh, obviously be, uh, doing a, uh, proper charity, I have to have, I had to, I had four trustees. But they were just sort of families and friends. It was almost like if anything I need, then, you know, they'll let me do something for me. 

But I didn't, I did it my own self because they're all kind of busy. They had their own company and, and, and they're always sort of busy anyway. So, but so I, I, I did it myself. So you started off in Brighton. When did you realize that you could probably do that somewhat? Cause you know, have more. Say aphasia.[00:12:00]  

Yeah, don't you? Yeah. Yeah. Does that start? How did you start with that? When I first started the charity, you know, I Realized, you know, you got, you know, Google and the Stroke Association and all that sort of stuff to realize that there's 350, 000 people Who's got people with aphasia? So my mission was to have more groups and get aware about what aphasia is We had the first group Group in, in, in, in Hove. 

You know, I knew some of the speech and language therapy. One of them, Kirsty, she was amazing when she realized I was going to be sort of part of it, they were, they were thrilled. Um, and then another speech and language therapy, um, uh, who used to be in, uh, the hospital in, uh, uh, Chichester, uh, told us that, you know, he, he had a look at the venues for Chichester, uh, and, and.[00:13:00]  

And it's just kind of, it's basically how it works. We decided to have a group in Crawley. And I think from when, just before the lockdown, I think the lockdown must be about five or six years now, just before the lockdown, we had about six groups in Sussex and another group in the North. in Skipton. And it's only because we know these people because before the lockdown we used to go to stroke association conference and we'll, and we'll have conversation with these people, you know, it's always people with aphasia. 

So I can have those sort of conversations when, you know, so we're kind of thinking about having a group. So yeah, I think before lockdown must be about, probably about eight or nine groups. And then we had lockdown, we decided to have a, decided to do Zoom. Because everybody was bored and couldn't go out sort of thing. 

So we just do that every, every week. We had about 40 people doing Zoom. [00:14:00] And when we're having the sort of conversations that we have in Zoom, there was a couple of people that, you know, they, they were thinking about, you know, sort of doing it for when the lockdown is finished. So we had the group with, we had Darlington, which is Pete that, that we, that, that we know, and that group. 

I'm from London as well, but I've been moved down to. Uh, East Devon. So, my closest place was, uh, Exeter. So, I met Barbara, and, and it started there. But then, she came to you, didn't she? You kind of, you joined that, didn't you? Yeah, they decided to get a merge for South Asia. They were living, is it, uh, living with aphasia. 

yeah. Yeah, brilliant. And I think they just have conversations quite a lot, you know, they wanted to know what we do, how it works, you know, and we could be just merging and do it together. And we did. I'm really pleased that it's good. 

[00:15:00]  
 

Jon (2): I think after the lockdown, we decided to do a different way. We had different trustees, so all of my sort of family and friends are gone, and we had people who know what, what, what I'm looking for. 

One of, is Barbara, who's part of the group in Exeter. So that's been good. And the other thing that we sort of decided to do is that all of the groups, um, um, and now we have about, uh, 18 groups now, to make sure that all of the peer leaders are people with aphasia. And that's quite successful. And you know, there's a lot of people with aphasia, there's a lot of things they can't do. 

So we have to make sure that we have [00:16:00] volunteers as well. We don't have aphasia. Yeah. Yeah. So the peer leaders, I've met the lady, Nikki, in Exeter. And I've just spoken to, to Emma. So what, what's their side, what's their role, sort of, day to day? What do, what do they do? Do they, do they run it for you? Yeah, it's, it's basically, the way that I sort of say it is that, you know, we, we don't have an agenda, and, you know, people just kind of just turn up, and it's free, and it's almost like you've got a new friend who's got the same brain injury. 

Yeah. You know, and the peer leaders, you know, if you've got a new member, the peer leaders just, uh, welcome you. Having a chat, have a cup of tea, cup of coffee. There's no rush to get the right words. If they're quite severe, they're quite happy to get, have their, their, their family, uh, or carers to go, go to the group as well. 

Uh, and it's, uh, it's nice to just talk about [00:17:00] life. Um, uh, and, you know, you, you either, There's two, lots of things that they need. Some people, um, had a stroke quite recently and they still want to practice their words. A lot of people just want to, you've got, you've got a new friend and you go to the group and talk about life, you know, you can talk about sports or, or holidays or whatever. 

And there's no, it doesn't matter if it's not quite right. You know, and if they can't get a whole sentence, you've got gestures, you've got, you know, you've got, I don't know, maps or, or your, there's always a way to work out what to translate. Yeah, yeah. So, so it's just kind of a very chilled environment because when you sort of, when you sort of go back home, it's, it's different. 

There's, and you can't have those sort of conversations. It's what strikes me though. Because, I don't, your [00:18:00] groups are, what, a few dozen are they? How big are the groups, generally? Uh, the group in Hoth, that was the first group, there's probably 25 to 30 people with aphasia. Right, right. And it's not just aphasia, it's primary progressive aphasia, sometimes people with aphasia, dysarthria, praxia. 

All of those people are quite welcome to go to the group, because, you know, there's the same sort of brain injury, who just can't get the right words. Strikes me, the however. That the number of people we're talking about is tiny compared to the number of people who actually got aphasia. Yeah, you know, you've got 350, 000 people who've got aphasia. 

I don't know how many groups there are around the country. Not, not just yours, but I still don't think they really touch the sides in terms of people who actually got aphasia. Oh, absolutely. No, I reckon we've got around about 300 members that we have for the 18 groups. Right. So, you know, [00:19:00] you're, you're quite right. 

No, it's not even that, is it? You're right. I can't do the numbers, but yeah, the tiny number. Yeah, yeah, absolutely. And, you know, one of the things I'm doing, I know you are anyway, is trying to get people to understand what is it. Because we're all slightly different, aren't we? We've all got a different version of it. 

Yeah. Um, some people obviously very bad, and some people, you know, manage to get by reasonably well. Um, my, my reading and writing's not terribly good, it's better than it used to be, I couldn't do it at all to begin with. But, you finally, you're up against a bit of a brick wall sometimes, because you're telling people about it, and they're looking at you, and they think, oh yeah, okay. 

And it doesn't really go in. In a lot of cases, they don't really don't, I mean, I, I, as a group, I play football, they know I've had the stroke and all that, and I've told them what, what my problems are, but even now they'll say, what's that you've got? [00:20:00] They think it's something else. It's not easy to work out what, what, what's going on for our brain. 

Yeah, it's just so, there, there are, there are part of the, uh, Aphasia Alliance. Right. It's got, uh, lots of companies and groups in, uh, for the Aphasia Alliance. Right. So, you've got people like, uh, Tavistock. Tavistock, yeah, yeah. I know there's that, yeah. And other sort of charities, uh, as well. And it, and it's, it's, uh, It's nice to get feedback about what they all, what they all do and anything we can sort of do together to get aware about it and all that sort of stuff. 

But, you know, like you say, it's not easy, isn't it? You're the same with your friends, you know, you know, going to the football, you know, trying to tell them what it is. And they will say, well, your words seem to be all right, so I think, you know, let's just see it now. What's wrong with you? Yes, well, you know, that's a thing that we have to live with, I suppose, in many ways. 

If you've got an idea why there isn't, [00:21:00] like the Stoke Stroke Association, why isn't there an aphasia association, one beak of charity, the alliance is a number of people put together, isn't it? But you're not actually Doing it together, yeah. You're not doing it together, no. I suppose they're all different companies, different, you know, in terms of get there, you know, you're thinking about You know, to sort of do things, do it together. 

Yeah. It's not easy. You know, there's, you know, the strokes, people have strokes. It's not just the stroke association, big companies, there is also the different strokes and all that sort of stuff, you know. We might have alliance, they have conversation with them together, but trying to do something together. 

Yeah. It doesn't happen. Yeah. I don't know why that is. Maybe because it's aphasia. And it's one of those things that people can't, even people who know what it's all [00:22:00] about, can't get their heads around the sort of, with strokes, they can say, oh, you've had a stroke. It's a medical thing, isn't it? Yeah, yeah. 

Whereas with aphasia, you know, it's It's, it's something in your head and it's all different and stone and so forth. We use Parkinson's, an example, ral Parkinson's. We're always having to go at them, but, but you know what Parkinson's is because they've got something physically wrong with them. But with a phase, you, you and I, nobody notices. 

So there's anything wrong with it. I, I, I think when you've gone, when you've got a dry brain injury where you can't get any, any words, particularly with quite severe aphasia, there's families, friends. In that area, they don't know that the intelligence are intact. I've got a, you know, a big family and when I got back in the hospital, going back to my house, I thought, I'm, I'm, I was always smiling and I was sort of thumbs up, you know, I'm alright. 

My intelligence is intact. I just can't [00:23:00] speak. But even like thumbs up and smiling, they're kind of thinking, Oh, you're really, you know, really intelligent. We've lost you. Yeah. What about the future? Then tell me about what have you got? Have you got any big plans to extend? Yes, I think that you can tell about, of course. 

Yeah. Yeah. We, we, we, we reckon for another, another five years to 10 years. We're trying to get. More groups, and we're talking about 40 groups, and we've got 18 at the moment, but also we have to be very careful, you know, you can't just get another group, you know, we have to make sure that all of the, all the things that we need to do, you know, we'll have, we do have all of the periods every month, we have a meeting, you know, what we're doing, you know, how's it going with the volunteers, how's it going with the, with the, with the members. 

When it's, when it's [00:24:00] bigger and bigger and bigger, we just need to make sure we've got the right people because we've only got two or three people who runs the whole empire. Yeah, yeah. So we need to make sure the people who, who, who are the right person for us. Right. When it's more people that we, we can still have those sort of conversations. 

We get probably get harder as you get bigger, won't it? Do you think? Yes. It, we might have to have, you know, like we had demo that, that, that you, that, that you saw. You know, maybe we have to have for two or three Emmas, whether it's over, we could Yeah, we, yeah, so, but, you know, it's, it's, it's not gonna be, you know, we're, we're, we're ready when we've got the right people. 

And I think we're also making sure that we'll have key going in terms of money. You know, it's all about grants, fundraising, all that sort of stuff. Tell me about it. So I'm doing a grant. Or just making sure [00:25:00] that when we are talking about 30, 40 groups, that we've got the money to do it, you know. On the funding bids, or do you get people in to help you with the bids, or? 

When I first started, I used to do myself my own grants and fundraising stuff. This was very good. It's not, I wasn't very good basically, but I, I managed to get some, a couple of, a couple of grants that I did. So it was good. And then we've got Lauren, who's my, my daughter. He's part time for SurfAsia. She started doing grants. 

She's just so much better, so actually very good. And, and then sometimes some of the trustees can get, get, get a funding company to do it for us. Right. So we've been doing that quite recently as well. Okay. So it is kind of getting bigger and bigger and bigger. Things that I just can't do anymore. Well, I wasn't very good anyway, but you know, we, we We've got different avenues now, so, yes. 

But as you get bigger, you'll probably [00:26:00] attract people to help you as well, I would have thought. We got to next year, we got a couple of good big grants. We had a good grant, a funding one this year, which was very successful. I think we have some more. Next year, so hopefully, hopefully it's going to be Okoon. 

And then we do fundraising. We, for about five years now, we do the half marathon in, in trying to get to 50 runners. It's not easy, but, but it was, you know, it's been very successful. So you've got a decent website as well now. Lauren is very good. She got, you know, all those, uh, the website and, and all these things that, that, that, that. 

We need to do. The website has been very successful. Do you have any connections outside the UK? On part, well, there is the Association of International Aphasia. And I'm now part of the board member, which is quite recently. We have roughly 50 countries who are part of this. So I'm part [00:27:00] of that as well. 

Right. And we have, we have one of our South Asia ambassadors. Hanker, any sort of conference that in different countries, she runs that where she did one couple of weeks ago. Right. It seems to be quite successful. So, yeah. And again, it's all kind of Zoom, having conversations, different countries. It's not easy because a lot of people can't do English, but one of the things that Hanker can do is that her job before her stroke. 

Um, he was a teacher with three or four different, what are they called, different countries. Yeah, different. So, so yeah, so we're part of that as well. I'm part of, so I know there's some great research for people with aphasia that City University and UCL do in London. So I, I, I do part of those. Do you know Suzanne, Suzanne Beeck? 

I know Suzanne Beeck. Yeah, she's been on our show already. Well, she talks about it because her thing is [00:28:00] about conversations, isn't it? That's her, that's her thing. So, we've had her on. I might have her back, actually, right? Well, you know, we, we, we plod on, really. I find sometimes you think, well, as I said at the beginning, sometimes you think we hit a bit of a brick wall, but we just carry on, really. 

It's the only thing you can do, isn't it? Obviously, I've got aphasia. It's 24 hours, 7 days a week, you know. Yeah, that's right. And my charity is like that, you know. I'm awake, I'm aphasia. Is that what you do? Yeah, yeah. So I'll do it, you know, every day. I've been trying to work out what I can do in terms of hobbies. 

Because before my stroke, I used to do desert runs. You know, I took a marathon at Basawa twice, and one old company was racing the planet. I was always, uh, fit and, uh, but recently I had, uh, two, uh, hip replacements. Oh my god. I am actually doing the half, the half marathon. Next to next year, [00:29:00] uh, hopefully. 

Okay, I've got a tip for that then. I'll have to, I'll be very slow, and I might even just walk. You won't be wearing a big hat or a head, or something like that? No, no, no. Or a chicken, you know. No, no, not at all. Well, it's fascinating, always, to talk to anybody, but particularly to you. You're, you're a bit of a whiz, really, aren't you, all this? 

You don't stop, do you? Uh, no, I don't, yeah. I don't know why. Well, I think I would have been quite bored, I think. If I didn't have that, you know, I had to do something. Well, my work stopped the minute I had the stroke, really. And so, you know, that's something that I have filled it with this, I have to say. I think the other thing is, is that, again, going back to my fog, I was so stressed. 

It took about two years to unstress. [00:30:00] Now, I just don't, I don't get stressed at all. And if we are getting, you 40 groups and all that sort of stuff, and I'm going to get stressed again, I'm just going to stop. De stress is a lovely way to be. Just one thing before we leave. I was interested to see that you had, you had quite a lot of speech and language therapy. 

I only had six weeks. It took me just over a month to get someone and then I'd had six weeks. And you said some people don't have it at all, is that right? Yeah, yeah. Really? I've had people who, oh, it'll take a year to get to and to wait the speech and language therapy. And it was always like, well, it's, it's too late. 

Almost. You've got to be quick, haven't you? Yeah. First three months, apparently. It's so frustrating. Even more frustrating, you haven't had any help at all in that sense. I think in different [00:31:00] counties, you know, some of the speech and language therapy is just people with aphasia. Um, some people have got with, not just people with aphasia, but other people. 

people who's got a brain injury. You could be a children as well. Yeah. I think that's what happened to me, actually. I mean, they were pretty, they were good when, when, when they arrived, but it took all, took a bit, a bit longer. We pushed it a bit. To you to get it, but it's, well, it's quite shocking actually, that people don't get any at all or very little. 

That's not, not good at all, is it? Well, thank you very much, Colin. Problem. It's been really interesting. More a part of your elbow, as they say. One day I'll have to ask you that. I, I, I might have to tie, I wonder, pack it in. But you, you say that, but when, when you are, when you, it's almost like I'm, but I'm still got aphasia, so you just carry on. 

You'll find another way of doing, of joining in one way or another. [00:32:00] Well, thank you Colin. Thank you for, it's been really interesting and as I say, keep going. It's great to see you. Well done. Thank you very much. Cheers. Bye bye. Bye bye. 

Thank you for listening to this On the Tip of My Tongue podcast. We hope you found it helpful and informative. Now, if you want more help and information about strokes and aphasia, please go to stroke. org. uk, say aphasia, that's s a y aphasia, or one word, dot org, or the aphasia page of nhs. uk.  

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