Empowering Voices: Dyscovering Aphasia Journeys

Long-Term Aphasia Support with Dyscover: Conversation Groups, Recovery, and Awareness

Hosts Rob Edwards and Jonathan Hirons introduce their podcast follow-up to Hirons’ film on aphasia, a language impairment often caused by stroke or brain injury, affecting speaking, reading, writing, and texting; they note 350,000 people in the UK have aphasia and awareness is low. After an ad inviting sponsorships, they speak with Dyscover charity staff Julie Samuel and Caroline McDonald, plus members Sarah, Neil, and Deena. Dyscover, founded over 30 years ago, provides long-term, facilitated conversation groups (in-person and online) for about 100 members and families. The members describe their strokes and varied recovery, ongoing challenges like fatigue and noise, and how Dyscover’s patience, practice, friendships, ambassador talks, research/training roles, and activities support confidence, identity, and life participation; they discuss patchy access, funding limits, and joint awareness efforts through the Aphasia Alliance.

00:00 Podcast Welcome

00:30 What Is Aphasia

01:09 Sponsor Message

02:16 Meet Dyscover Team

03:34 What Dyscover Does

05:48 Members Stroke Stories

06:20 Sarah Living With Aphasia

08:39 Neil Recovery Journey

11:06 Deena Progress And Challenges

13:46 Long Term Support Gaps

18:39 How Dyscover Helps Members

22:05 Neil As Ambassador

23:59 Editing Skills Return

24:40 Back at BBC Freelance

24:48 Deena Finds Support

26:28 Future of Discover

28:12 Online Groups Reach

30:36 Government Awareness Gap

31:24 Ambassadors Long Term Support

36:30 Deena Cycling Story

38:09 Closing Thanks and Resources

Dyscover webside:

https://dyscover.org.uk

Transcript

Podcast - S4 E6 - Dyscover 
 

Julie [00:00:00] We provide that protected environment for people to convey their opinions, have a debate, have a good conversation  

Rob Edwards: Hi, and welcome everybody, and we hope you enjoy this podcast called On The Tip of My Tongue. Now, I'm Rob Edwards. And I'm Jonathan Hirons. And this podcast is a follow-up to a film which Jonathan made about aphasia. So what is aphasia? Well, it's a condition caused by some kind of injury to the brain, which is often could be a stroke or could be just falling off a bike, and it affects your ability to use language in all its forms: speaking, writing, reading, sending texts, whatever. 

350,000 people in the UK suffer from a debilitating condition called aphasia. Fewer than half this number suffer from Parkinson's, and [00:01:00] yet most people have heard of Parkinson's, whilst almost nobody has heard of aphasia 

Rob Edwards Before we get started, I'd like to tell you about an opportunity to reach a really engaged audience. If your organization supports people affected by stroke, aphasia, brain injury, or disability, or if you simply want to align your brand with meaningful conversations, we'd love to hear from you. On the Tip of My Tongue has been downloaded more than 100,000 times by listeners who genuinely care about the topics we cover. 

We offer affordable in-podcast ads and sponsored episode opportunities, and because we read many of the adverts ourselves, your message feels like part of the conversation rather than an interruption. If you'd like to introduce your organization to our growing [00:02:00] community, visit http://tipofmytonguefilm.com and click Partnership Opportunities. 

Now, let's get on with today's episode. 

Julie: My name is Julie Samuel. I'm the head of service and the lead speech and language therapist for  

Dyscover. I'm going to introduce the colleagues on the screen here. 

Caroline: Name's Caroline McDonald. , I am the coordinator for Discover's Aphasia Ambassador Group. So I help support our ambassadors, who are our members, to go out into the community and give talks to spread awareness about aphasia, and the work that Discover does to support them. 

So I'm here in that capacity today. I'm also a speech and language therapy assistant, so I run some of our groups. Thank you, Caroline. Great. Um, Sarah? 

Sarah: I'm [00:03:00] Sarah. I'm a Discover member. Um, I, I have been coming for six years to Discover.  

Brilliant. Thanks, Sarah. And Neil?  

Niall: Uh, my name is Neil. I love the, uh, uh, people. 

I've got, uh, uh, uh, harder, uh, speaking. Yeah.  

Julie: Yeah. Brilliant. Thanks, Neil. And Dina?  

Deena: Dina Graham, uh, and, um, uh, Hanke. Yes  

Julie: Brilliant. Thanks, Dina.  

Jon: So let's talk a little bit about, um, Dyscover.  

Julie: So we are a specialist charity. We started over 30 years ago. Started by a wonderful lady who is still very involved, our president and founder, still very much involved with Dyscover. 

She's a speech and language therapist, and recognized there was a need for long-term support, even all those [00:04:00] years ago. Um, once the NHS has done their wonderful input, it's then finding some help for the many years thereafter. So she started communication groups, which we continue to do. Um, we do them both face to face and online, and basically they are opportunities for people with aphasia to get together, have conversations, supported and facilitated by speech and language therapy assistants and trained volunteers. 

That's what we do. We provide that protected environment for people to, um, convey their opinions, have a debate, have a good conversation. 

Jon: So how many members have you got at the moment then?  

Julie: Uh, we usually run around about the hundred mark. Varies slightly. We run, uh, eight different groups. Right. Um, plus a reading group as well. 

Um, and obviously the support for the families too, so not [00:05:00] just those sort of 100 members, but the ripple effect, if you like, of significant others as well.  

Jon: So the, the actual groups themselves, do they do different things? Uh, uh, is that- No ... for an art group or that sort of thing?  

Julie: The format is basically similar. 

They're all conversation groups. Right. Um, but each week we have a topic. Um, for example, this last week we were talking about ambition and, um, what, what did people want to do when they were younger? Did that happen? How did they get into their career? What would be their dream ambition? Um, so each week we have a different topic that we talk about. 

Um, and yeah, it's basically a, a conversation opportunity. Uh, and each group runs quite similarly really, whether it's on screen or it face to face.  

Jon: Obviously the, the main thing we're gonna talk about is long term, is what happens a- after a stroke, that everybody has a slightly different story. But it basically- Uh 

it is the same story, isn't it? [00:06:00] It is. After the... Yeah. Go on.  

Julie: Yeah, it is. No, it'll be interesting to hear from the three members that we've-  

Jon: Yeah, indeed. Carolyn, could you manage this, uh, this part of it? W- what we really want to ask is how people got their strokes and what happened. Indeed. How they got aphasia, and so on and so forth. 

If you could run that bit.  

Julie: So, um, we're gonna start, and I'll ask Sarah first. Um, Sarah, could you tell us when you had your stroke?  

I had my stroke in December 2018, 

seven and a half years ago, completely out of the blue. I, uh, um, when I had my stroke, I couldn't speak. When I was in hospital, uh, I had only one sound. And then the four months I was in a rehabilitation hospital, I have to learn [00:07:00] to speak again. I had only, um, very few words. I had to learn how to speak and read and write. 

I have expressive aphasia. Um, um, I always struggle to express ideas. I, I'm okay, um, uh, with a simple sentence, for example, "I'd like a coffee," but, uh, when I have to want to express an, an idea or more complicated sentence, I struggle. I think speech is, uh, the most difficult form of communication for me. Um, reading and writing, um, um, I struggle with, uh, but, [00:08:00] um, comprehension, I, I'm, uh, less so. 

Okay. I like it quiet. Um, when I speak, my husband pauses the, uh, remote of the TV if I want to speak. I don't like background or loud noises. Tiredness affects me, and, uh, I have to concentrate on my words. Right. 

Mm-hmm. 

Um, and, uh, sometimes it's frustrating and, uh, it's tiring. Very  

true, Sara. Thank you. Neil, I'm going to ask you the same question. 

When did you have your stroke?  

Niall: I had, uh, a stroke four, uh, 17, uh, years ago. And, uh, uh, before, uh, years I know, uh, 12 years, uh, [00:09:00] speaking tough. Yeah. But, uh, now okay, uh, speaking Um, but, uh, the language is different, and, um, reading, uh, is fine. Mm-hmm. Uh, and, uh- Reading's fine 

writing, uh- Writing, yes ... writing is harder, but, uh, okay. But, uh, speech is difficult-  

Julie: Yeah ...  

Niall: to talk. And, and, uh, tough. Yeah.  

Julie: How about understanding, Neil? Understanding. Oh, dear God. Uh, but, uh,  

Niall: uh, all right. Uh, sometimes, uh, 99% fine,  

Julie: but, uh, sometimes not. But, uh, uh- Egg 

Niall: and egg ... slow 

down 

speaking, slow. Yeah. But sometimes- Or  

Deena: even ...  

Niall: yeah, uh, depends.  

Julie: Have your [00:10:00] improvements just gradually got better?  

Deena: Yes.  

Niall: No, yeah. Uh, yeah, fantastic. Uh, good idea. But, uh, uh, static and don't, uh, and wonderful, amazing. Um-  

Julie: So you were static, nothing changed for a while, and then you saw- One ... huge improvements- Yes,  

Niall: yes 

Julie: improvement suddenly.  

Niall: Honestly. Honestly.  

Julie: And was that, um, initially, uh, after a short time, or did that, those improvements come later?  

Niall: Sometimes, uh, fast, uh, the minus static and suddenly higher- Yeah ... uh, speaking. But, uh, uh, one year nothing, and 

suddenly fantastic. Wow. Or, uh, uh, speaking, uh, uh, wonderful.  

Julie: And even after... So your stroke was a long time ago, but even [00:11:00] after 10 years, you're still- Yes ... seeing improvements.  

Niall: Yes. Absolutely. 100%.  

Julie: Deena, I'm going to now ask you the same question. When did you have your stroke?  

Deena: I think, um, uh, 13 years ago. Yes. Um, uh, and, um, uh, I s- um, not got any, not got any much, just yes and no, yes and no. 

And, um, uh, um, then I go to, um,  

Julie: I- Speech  

Deena: convert? Yes. And, um, uh, slowly, um, uh, I got better and better, but, um, uh, I still not quite as much as, um, Neil because Neil and myself, um, go together- Yeah When it first come You've done. Yeah ... [00:12:00] but I, um, it's okay for me because I am solely myself. Yeah, yeah. So, um, it's, uh, a bit difficult, but I, um, I still go, and, um, it- it's okay. 

It's okay.  

Julie: So you live on your own, Deena?  

Deena: Yes, yes.  

Julie: So you don't have that conversation opportunity.  

Deena: That's right.  

Julie: So just thinking about your aphasia and how it affects you, you said your speech has got a bit better. Yeah. What about your understanding of what  

Deena: pe- Understanding is, um, uh, good. I, um, want to say, but I can't say it, but it's good. 

Yes, yeah. Reading and writing, not, um, 

d- um, not d- difficult. It's, um, in fact, it's, um, uh, m- um- Just the same, I [00:13:00] was a PhD student, so I'm, I... 

Julie: It's very difficult. I'm praying  

Deena: for you. Yeah.  

Julie: Mm-hmm. You have lost the, that ability.  

Deena: Yeah. But it's, uh, it's good, and that's the main thing. I want to be, um, s- um, going, um, slowly up, and I do. Yeah. Yeah.  

Jon: Thank you very much to everybody. That's- Mm-hmm ... it's really interesting, isn't it, to talk about three different people with three different sort of- Yeah 

problems- Ab- ... and solutions as well. Um- Which is the important thing, is every- everybody's got better in some way or form.  

Niall: Yeah.  

Jon: Mm-hmm. I read something the other day, this is about strokes specifically, but, um, people can recover from strokes. Medical model is being sort of, not superseded, but they're saying, "Well, actually, it's not just what [00:14:00] happens in hospital." 

Julie: That's the big challenge- Absolutely ... finding this support when we know that geographically there's very patchy access to long-term- Yeah ... support, and we know that there are funding issues in terms of long-term support, even when it's described in all of the stroke models that the rehab should be a long-term event. 

It shouldn't be just a short-term, uh, input, but funding doesn't allow that, so- Yeah ... so it's described in the model, but it's not possible at the moment for the NHS certainly to provide long-term support. So, the challenge is really difficult, especially when lots of people don't know what aphasia is. Yeah. 

Niall: Yeah. We  

Julie: know that raising awareness is part of this, this challenge, if you like. Um, and we know that it can be described as a hidden disability, because it's not blatantly obvious. You can't necessarily see it, and so the public don't have a great awareness, I don't think, of [00:15:00] aphasia. Yeah. And that's an ongoing challenge in itself- Yeah 

isn't it?  

Jon: Well, that, that's one of the things I'm doing here, really, is to, uh, try and people, get people to understand what happens after somebody's had a stroke. But you don't realize all the things that go with it. Yeah. And when you end up with aphasia as well, it's just to make it doubly difficult. Um, you have communication problems after somebody's been let, let out into the world, as it were. 

Uh, and you've got your groups going. But, as you said, it's, it's very patchy, isn't it?  

Julie: Very badly. And finding is relying on, uh, probably a speech and language therapist to know about us, and to then pass that information on- Right.  

Jon: Exactly, yeah ...  

Julie: to the person with aphasia. Yeah. Um, and if they don't know about us, then they, they have difficulties knowing where to signpost. 

Jon: When we talk about funding, to fund what? [00:16:00] Because this is the other issue, isn't it? I- if you're a speech language therapist, you go down that particular road. But- The, the other side of the story, I suppose, is the long-term stuff. So what c- what do you fund? Do you fund groups? T- uh, uh, not you, but one. Mm-hmm. 

Does One fund groups? Does the NHS- Mm-hmm ... fund for groups, or do they, um, give people more S- um, SLTs? I don't know.  

Julie: I- it's a big question, and I think in terms of sort of life participation, which is what, what we're aiming for, and being able to ac- reaccess back into the community, um, it's, it's a whole big, um, it's a whole big package, isn't it? 

Because you're looking at sort of self-esteem, confidence, returning to- Yeah ... finding your identity, working on your communication. It, it's a huge package really that, that would be an ideal gold standard, wouldn't it, to cover a broad spectrum of areas that are impacted.  

Jon: Mm-hmm. And I think that's the problem, is it, because it's [00:17:00] so, um, it's so diverse. 

The problems are diverse, and therefore what you pick on. So they might, you might pick, the, I'm t- the, the NHS or the funding organization might pick on one thing but miss another opportunity- Yeah ... somewhere else. It's a bit like aphasia. Nobody knows what to do with it half the time, do they?  

Julie: If we were funded, we would definitely grow bigger, and I think we would have more f- more funding to market and to promote aphasia. 

I think that would be a great way of utilizing funds to get people to know about charities and other third sectors out there. If we were funded in a format where we could do more and- Yeah ... see more people, that would be fantastic. Yeah.  

Jon: And a- the third parties are the ones that really need to be... I mean, the people with aphasia kind of understand it, don't they? 

'Cause they, 'cause one thing I've learned through all this is that groups are the thing that works for most people. Yeah. Because it [00:18:00] gets people together. You're all together with the same similar problem. Uh- Mm-hmm ... so you don't have to explain it to somebody.  

Julie: Yeah.  

Jon: No. Yeah. As I have to explain it to people-  

Julie: Yes 

Jon: if they don't know me. Yeah. That this is the problem that I'm fa- No ... and they'll say, "Well, you sound all right to me." We all know that you get tired, and this is, and things, you forget things or you g- you can't express things. Getting that across to the man in the street or the woman in the street, um, is very difficult. 

Yeah. And then they don't really understand what you're talking about anyway. Then you end up Back where you started from.  

Julie: Yeah. Absolutely. Hopefully, we can hear from you- the members here, what has helped- Well,  

Jon: that, yeah ... the stroke  

Julie: Yeah within the group. So is that a good opportunity- Yes, it is 

to ask our- Yes ... uh, three ambassadors- Yeah ... about their experiences of Discover. Yeah, indeed. So Sarah, I could start with you again and ask you, when did you join Discover?  

I, I joined Discover a year, [00:19:00] um, post-stroke. I have joined in, uh, uh, six years I've been coming to Discover. And Discover is, in a nutshell, uh, it is brilliant and a lifesaver for me. 

Niall: Awesome.  

Julie: It has shown that I'm l- not alone, and, um, and it's a support group. It's all about friendship and support for me. Yeah. In terms of speech, um, Discover makes this easier to speak. People are always very patient and gives you time to, uh, speak. Uh, speech requires practice.  

Deena: Mm-hmm.  

Julie: Discover facilitates that. 

Um, and it builds you, uh, [00:20:00] confidence and, uh, it is long-term support. Discover, um, I think is good for me because it's, uh, s- provides self-esteem and long, long-term living with aphasia. Um, I have become an ambassador, um, uh, for Discover. I give presentations and there is always somebody from Discover there to support me. 

I love being involved with the research and the training for SLT students, and that it gives you purpose and fun, and, um, makes you more confident  

Neil, how about you? When did you join Discover?  

Niall: I think it was, [00:21:00] uh, 12 years ago.  

Julie: 12 years ago.  

Niall: Yes, a similar, uh, idea. Yeah. And, uh, similar. Uh, and, uh, but, uh, language is difficult. 

Julie: Yes.  

Niall: And, uh, in years, uh, yes and no, and sometimes, uh, cat and dog, and, 

uh But, uh, now fine, but slowly. Yes. Mm-hmm. And increase. Slow  

Julie: progress. And how has Discover helped with your progress- Well- ... with your  

Niall: improvement  

Julie: in language? Uh,  

Niall: the people are fantastic. Uh, old and new, and, uh, 20 years old, uh, old, and- Yeah ... 80 years old. Yeah. Yeah. But, um-  

Julie: Different ages. Yeah.  

Niall: Mm-hmm ...  

Julie: but,  

Niall: uh, the people are fantastic. 

Good. Uh, I love the, uh, people. [00:22:00]  

Julie: Lovely. So you enjoy meeting other people. And, um- Yes ... you've obviously been an ambassador too. Yeah.  

Niall: Uh-  

Julie: How has that helped you? Six years ago,  

Niall: and, uh, uh, starting ambassador, learning and, uh, speaking. But-  

Julie: Oh ...  

Niall: uh, okay, but, uh, speaking is, and, um, the, uh, speech is slurred.  

Julie: Yes, your speech is slurred. 

Yes.  

Niall: Mm.  

Julie: But you s- Awful ... you still get the message across, Neil. Yeah.  

Niall: The, uh, but, uh, before speaking beautiful.  

Julie: Yes. Speaking.  

Niall: But  

Julie: now  

Niall: yes. 

Oh. Oh, God. Y-  

Julie: you deliver some wonderful talks, Neil. I think you're very modest. Yeah. And demonstrate the challenges, but you get the message across- Yes, yes,  

Niall: yes ... which is  

Julie: really great. Um, what other opportunities have you had through [00:23:00] Discover to- Uh ... help you?  

Niall: Yes. Uh, uh, eight years ago-  

Julie: Mm-hmm ...  

Niall: uh, starting, and, uh, and, and starting editing, uh, and, uh, but, uh, before, oh, God, uh, uh, five years, oh,  

Julie: uh,  

Niall: scared. 

Uh, and, uh, one, uh, and, uh, the, uh, uh- Speech and all editing  

Julie: Mm-hmm ...  

Niall: is fine  

Julie: Yeah. But, you know- So your, Neil, what was your job before your stroke?  

Niall: At the BBC. Mm-hmm. Uh, and that's, uh, 20 years ago.  

Julie: Okay. Mm-hmm. E- editing TV programs.  

Niall: Yes, yes.  

Julie: Yeah. Okay.  

Niall: And, uh, uh, but, uh, stopped, and, uh, and, uh, uh, get a little.  

Julie: Yeah,  

Niall: yeah. 

But start again, uh, eight years. But, uh, the, um, uh,  

Deena: [00:24:00] editing  

Niall: is simple. Uh- So  

Julie: you were involved with a research project with a- Yeah ... university, with City University-  

Niall: Yeah. Yes, yes ...  

Julie: through Discover. Yes. And what did you have to do on that project that-  

Niall: Uh, uh,  

Julie: editing the film  

Niall: You had to edit  

Julie: a film. Y- yeah. Yeah. 

But- Mm-hmm ...  

Niall: uh, the, uh, cutting and slicing and, uh, stuff. But, uh- Uh-huh ... simple. Simple.  

Julie: Yeah. Simple for you, Neil. Simple for you. For you. Not for, not for a lot of us. So you showed you could still do it.  

Niall: Yes. Mm-hmm. Absolutely, 100%.  

Julie: Brilliant. Uh,  

Niall: yeah.  

Julie: And now you're back working for the BBC again.  

Niall: Yes, yes, yes. 

Freelance. Um-  

Julie: Freelance, yes. Yes. Yeah. Now. Wonderful. Um, Dina, can I ask you the same question? When did you join Discover?  

Deena: The same as Neil. Uh, we both, um, go [00:25:00] together, so that's- Did you- Yes. Joined  

Julie: at the same time. That's lovely.  

Deena: Um, yes, yeah.  

Julie: Um- And how does Discover help you? How has it helped you?  

Deena: Um, uh, 

friendship and, um, because, um, uh, I used to be, um, uh- Yes, and I'm a lecturer. Mm. And so that's my f- um, g- good thing. And then I, um, got the stroke, and, um, oh dear, what's happened to me? But now I feel, um, much better. Yeah. And I, um, still go to cycling once a week, yeah, and, um, uh, Pilates.  

Julie: And so you've been an ambassador for Discover as well, haven't you? 

Deena: Yes. Um,  

Julie: how do you- Um- How does that help you?  

Deena: Oh, um, a lot. I [00:26:00] feel, um, I feel much lecturing is for me.  

Julie: Lovely for you to work with students- Students ... with speech  

Deena: and  

Julie: language therapy students- Yeah ... helping them to understand aphasia. Under- yeah. And you're almost back in your lecturing role. Good,  

Deena: yeah. It's  

Julie: really lovely. 

Um, great. Thank you.  

Deena: Yeah.  

Jon: Again, very interesting to listen to, uh, three different people doing different things with aphasia. So back to Julie. So what about the l- long term for DISCOVER? Obviously, more funding would be good, but, um, overall, what are you trying to improve at the moment with what you do? It sounds brilliant already. 

It doesn't need much improvement, but I'm sure you're- ... you're gonna, you're gonna tell me otherwise, aren't you?  

Julie: We've been through a few changes recently, including moving to a new building. Right. So we've had a little bit of, little bit of a, a change in where we run our groups, but that was, we've settled into that really nicely now into the new [00:27:00] building. 

I think going forward, we meet with other aphasia charities, which are part of the Aphasia Alliance, which I know you know about, Jonathan.  

Jon: Yeah.  

Julie: And I think what we're thinking about is what can we do together, having a bigger voice, a- as much as obviously DISCOVER continuing to grow and continuing to strengthen. 

But what, what can we do as, as a group- Yeah ... of charities across the country, how can we strengthen our voice all together and actually, um, increase a- aphasia awareness? And I think- Yeah ... that's our immediate sort of, uh, goal really is to try and find a way that we can do that as one, sort of one voice. 

Yeah. Some of us went up to Parliament in, in June, and, you know, strengthened our demands for charity to support people with aphasia. But it is an ongoing story, isn't it? This is an ongoing need. Yeah. Um, and I think we just need to find ways where we can collectively and cohesively raise awareness. Um, so I think [00:28:00] that for me is really important. 

And as far as DISCOVER goes, that, that continues to be the case of reaching out to people who need support and finding ways to do that, getting that message across.  

Jon: Just remind me how much your reach is, uh, as DISCOVER.  

Julie: Yeah. We're based in Leatherhead and Kingston- Right ... upon Thames. We run a group. Right. 

But we also run online groups. So there, the, the address there- Anywhere ... comes anywhere, yeah, exactly. Yeah. Nationwide or even international. Even abroad. So even abroad. Even abroad.  

Jon: Exactly. Even abroad.  

Julie: Even abroad. Yeah. So the online groups really reach out to people who don't have anything locally, um, but definitely want to continue with having support. 

Jon: I've often talk about this, is it's fine if you live fairly close to a group, but, uh, uh, in c- certain parts of the country, we're talking 50 miles to go to a group. Yeah. And it's not possible. Well, it is possible, but it's expensive, takes a lot of [00:29:00] time, et cetera, et cetera.  

Julie: Yeah.  

Jon: So I think the cohesiveness probably is something to do, there's some sort of network has to be set up, does there really? 

That where you can, wherever you are, you're only- 10 mile, 10 miles from p- somebody with aphasia. That's like No, no. Bit like rats. I  

Julie: mean, I think, exactly. I mean, I think what's interesting is the people that have joined our Zoom groups actually report the significant benefits from being on screen, uh, with other people with aphasia- Yeah 

within the groups. Like in the- They report similar benefits. Yeah. And so if they can't get to be face to face, then this is a, a really good alternative.  

Jon: The two things there, one is technology and the second is COVID, 'cause I, I think COVID started- Mm ... a lot of this sort of stu- and Zoom, uh, which we're on now, leaps and bounds because of, because of COVID. 

Mm. Not because of anything else. Absolutely. The technology's come a lot quicker.  

Julie: Yeah.  

Jon: Uh, and it's, and it's a lot better. I [00:30:00] mean, I've, I did some Zooms a long time ago, and these were sh- they were awful compared to what we're having now. And here we all are. We can see each other. The quality's good.  

Deena: Yeah. 

And I- It's amazing.  

Jon: It is ... Neil may disagree, but, um,  

Deena: Of course.  

Jon: Of course. Um,  

Deena: going back  

Jon: to your point, I think get- getting people together, rather a disparate gr- group of people doing the same things, and everyone's doing wonderful things, but they tend to be doing it in little boxes here, there, and everywhere, aren't they? 

So how you fix that, I don't know. What do the government have to say? Not much, probably.  

Julie: Not much.  

Jon: Yeah. No, no. A surprise.  

Julie: Challenge.  

Jon: Yeah.  

Julie: It's a challenge, yeah. Absolutely.  

Jon: It's a challenge.  

Julie: And 

Jon: to be honest, you don't die of aphasia, do you? And, and this is the problem. And I think with a lot of government organizations, it's not a, a burning issue, really, in that s- it is to, to people with it. 

But generally speaking, it's not high on the [00:31:00] list. That's what I'm trying to say. 

Julie: No. Not, not the priority.  

Jon: In a very long way around. It's very, yeah. No, absolutely. You're right. It's not a priority. That's right.  

Julie: Not considered the priority when it should be. No. Yeah. They're looking at maybe, uh, swallowing difficulties and the high risks- Yeah 

of swallowing post-stroke. Yeah,  

Jon: yeah.  

Julie: But the, the, the long-term effects of, that our members are describing are significant.  

Jon: Caroline, have you got ... Do you want a show- A question, actually ... you've got a list, haven't you?  

Julie: Yeah, I have.  

Jon: Go for it,  

Julie: so to say. Um, there was one last question we could ask the ambassadors, which was about any other type of long-term support that they've found helpful. 

Sarah, do you, what other support have you found  

I have met people, uh, through Discover, and I see them regularly. Um, uh, I do, uh, golf and swimming, uh, weekly. Um, I did it, uh, as a, a Discover activity, uh, two or three years ago, but now I, [00:32:00] um, meet them, uh, at the same time and, um, um, and, and do the activity of whether it's golf or swimming, and have a cup of tea and chat. 

And, um- Lovely. Lovely. Yeah. And- Fantastic ... also, Discover asked me to be a peer reading group, um, leader. And so I do, uh, PowerPoints and, uh, I w- lead the reading group, a weekly- Mm-hmm ... reading group, and it's lovely for me to, to do it, uh, speaking and reading, and IT, um, regularly, and, uh, it keeps me on my toes. 

Yeah. Ab-  

ab- sounds like it. Brilliant. Brilliant. Thank you. Neil, what other, um, long-term support have you, do you get- Yeah ... from Discover?  

Niall: Yes. Uh, uh, [00:33:00] two fifties a- a- and, uh, uh, and, uh, uh- Out of  

Julie: Discover, I should  

Niall: say. Yeah, yeah, yeah. And, and at, uh, uh, coffee, uh, uh, every year, uh, meeting up.  

Julie: Yes.  

Niall: Yes. Uh, uh, uh, lovely, uh, groups and, uh, for, uh, one hour and, uh, 30 minutes. 

Okay.  

Julie: By, uh,  

Niall: uh, speaking. Mm. But, uh, yeah. Yeah. But, uh, lovely people. Um- So  

Julie: you meet outside of Discover at a cafe. Where exactly do you-  

Niall: And, uh, uh, Teddington.  

Julie: Um- The hotel in Teddington.  

Niall: Yes.  

Julie: And you all meet for a coffee 

Niall: at the- Uh, uh, two, uh, uh, 10:30. But, uh, uh, but, uh, fantastic. Amazing.  

Julie: That's great.  

Niall: Yeah. But, uh-  

Julie: Meeting in a different setting.  

Niall: Yes. Yes.  

Deena: Yeah. To them.  

Julie: Mm. Um, and in terms of other people that maybe you get support from- Yes ... uh, [00:34:00] family and friends? Y-  

Niall: yes. My, uh, uh, and, uh, woman, and, uh, uh, Mm-hmm. Uh, and, uh, and, uh, uh, uh... 

But, uh, wife and, uh, speaking, uh- Uh, for, uh, 30, uh, 30 minutes speaking. And, uh, part 16, the, and, uh, the book. Yeah. But, uh, typical.  

Deena: Mm.  

Niall: Okay. And sometimes talking and sometimes, uh, uh, stupid. But, uh, uh, uh, and I like speech therapy.  

Julie: Yes.  

Niall: Yes. You  

Julie: have a speech therapist.  

Niall: Yes. Monday, Tuesday, and, uh, Friday. Mm. And,  

Julie: uh, a lots  

Niall: of money. 

And But, uh- Lots of money. Yes. But, uh, and, uh,[00:35:00]  

uh, speaking is, um,  

Julie: okay.  

Niall: One hour, uh, Monday, Tuesday, and, uh, Friday. But, uh, speech, uh, difficult Uh,  

Julie: but okay  

Yeah.  

Niall: Yeah.  

Julie: Now you've put a lot of work into your, your improvements-  

Yes,  

Niall: yes ...  

Julie: yeah.  

Niall: So we like that, improving.  

Julie: Yeah. Yeah.  

Niall: Yeah.  

Julie: That's fantastic. Great. Um, Dina, can I ask you now, and I think you might have mentioned a few before, but, um, other types of support you get outside of Discover? 

Deena: Yes. Um, uh, speech therapy and all. Um, I go to speech, um, and, um, 

uh, Vicky, who- Mm-hmm ... is, um, very good, and she's, um, always, um, very good. Very good. [00:36:00] Okay. I do, um, that, um, um, and that's all. And of course cafe, that's for, yes. 

You 

go to the same cafe- Yes ... with, with Neil. Yeah. Yeah, yeah. That's very good at all.  

Julie: Um- D- do you do activities too?  

Deena: Yes. Um- Yeah ... cycling and, um, uh, Pilates and- Yeah ... uh, uh, yeah. Yeah. So all, all good for me. And-  

Julie: What,  

Deena: how  

Julie: does the cycling work, Dina? Can you tell us a bit about that?  

Deena: Um, uh, I go, um, to cycling, Bridget and I. 

Mm-hmm. And, um, we go Buttery Park, and we go together on the- Yeah. Yeah. Um-  

Julie: So they're specially adapted bikes.  

Deena: Yes, that's right. Yes. And, um, uh, um, it's fantastic. It always good, [00:37:00] and I think, uh, sometimes I think, "Oh, God, no," but I th- um, go anyway. And, um, we get along so well. Yes. Brilliant. Brilliant. And four, four miles we go. 

Yeah. Yes. Oh, how  

Julie: good.  

Deena: Yes. Yeah. Very good. So it's very good. Yes.  

Julie: Yes. And you're chatting at the same time. Same 

time. Yeah. Brilliant. Yeah. Good conversation practice.  

Deena: Yes. Yeah.  

Julie: That's wonderful. Wonderful. Thank you. Thanks. Thank  

Jon: you, Caroline That, that's inter- as well, isn't it? In s- they have more li- more lives than I do. Oh. I, I'm stuck in my studio doing this.  

Julie: Oh. Fantastic podcast. Fantastic. Yeah, exactly. Yeah,  

Jon: exactly. 

Yeah. So, well, this is great. It's so much, um, fun doing this, actually. Yeah.  

Julie: Yeah. Great. It's great to hear and  

Jon: great- It's very hot as well. Yes.  

Julie: Yeah. It's [00:38:00] brilliant. Thank you, Jonathan.  

Jon: No problem. Um-  

Deena: Thank you, um,  

Jon: Jonathan ... no, no, it's been great to talk to you all, actually. It's been good fun. And, um, there's a, a lot of life going on after aphasia, isn't there? 

Or with aphasia- Yes ... should we say.  

Deena: Yes. Yes.  

Julie: Excellent. 

@Rob (2): 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, all one word, .org or the Aphasia page of nhs.uk. 

@Rob: This has been a Buffalo Lounge production. Please follow Buffalo Lounge on all the socials.