Empowering Voices: Dyscovering Aphasia Journeys

On the tip of my tongue - talking about Aphasia - Jonathan Hirons and Rob Edwards

This episode of 'On the Tip of My Tongue' explores the lived experiences of individuals with aphasia, focusing on long-term recovery and com

Key takeaways

• Aphasia is a hidden disability with limited public awareness despite affecting hundreds of thousands in the UK.
• Long-term support beyond hospital rehabilitation is crucial but often inaccessible due to funding gaps.

Main topics

• Aphasia after stroke
• Long-term rehabilitation and recovery

Notable quotes

"We provide that protected environment for people to convey their opinions, have a debate, have a good conversation."

"I had only one sound... I had to learn to speak again." - Sarah

Conclusion

This episode underscores the importance of sustained support systems and community

Transcript preview

Speaker 6 (0:00) We provide that protected environment for people to convey their opinions, have a debate, have a good conversation. Speaker 1 (0:13) Hi and welcome everybody and we hope you enjoy this podcast called On the Tip of My Tongue. Now I'm Rob Edwards Speaker 2 (0:22) and I'm Jonathan Hirons and Speaker 1 (0:24) 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 text, whatever. 350,000 people in the UK suffer from a debilitating condition called aphasia. Fewer than half this number suffer from Parkinson's, and yet most people have heard of Parkinson's whilst almost nobody has heard of aphasia. Speaker 1 (1:08) 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 community, visit http://tipofmytonguefilm.com and click Partnership Opportunities. Now, let's get on with today's episode. Speaker 6 (2:16) My name is Julie Samuel. I'm the head of service and the lead speech and language therapist for Discover. I'm going to introduce the colleagues on the screen here. My name's Caroline McDonald. Speaker 5 (2:30) 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 talk 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. And Speaker 3 (2:57) Sarah? I'm Sarah. I'm a Discover member. I have been coming for six years to Discover. Brilliant. Thanks, Sarah. And Neil? Speaker 7 (3:12) My name is Neil. I love the people, but harder speaking. Yeah. Yeah. Speaker 6 (3:22) Brilliant. Thanks, Neil. And Speaker 4 (3:24) Dina. Speaker 4 (3:27) Dina Graham and thank you. Yes. Speaker 6 (3:32) Brilliant. Thanks, Dina. So Speaker 2 (3:34) let's talk a little bit about Discover. Speaker 6 (3:39) 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 Discover. She's a speech and language therapist and recognised there was a need for long-term support, even all those years ago. 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. 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 convey their opinions, have a debate, have a good conversation. Speaker 2 (4:41) So how many members have you got at the moment then? Speaker 6 (4:44) We usually run around about the 100 mark, varies slightly. We run eight different groups, reading groups as well. And obviously the support for the families too. So not just those sort of 100 members, but the ripple effect, if you like, of significant others as well. Speaker 2 (5:06) So the actual groups themselves, do they do different things? Is that an art group or that sort of thing? The Speaker 6 (5:12) format is basically similar. They're all conversation groups. But each week we have a topic. For example, this last week we were talking about ambition and 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? So each week we have a different topic that we talk about. Speaker 6 (5:37) And yeah, it's basically a conversation opportunity. And each group runs quite similarly, really, whether it's on screen or face to face. Speaker 2 (5:47) Obviously, the main thing we're going to talk about is long term, is what happens after a stroke. Everybody has a slightly different story. But basically, it is the same story, isn't it? It is. Yeah. Yeah, it Speaker 6 (6:02) is. It'll be interesting to hear from the three members. Yeah, indeed. Speaker 2 (6:06) Carolyn, could you manage this part of it? What we really want to ask is how people got their strokes and what happened, how they got a phaser and so on and so forth. If you could run that bit. Speaker 5 (6:17) So we're going to start and I'll ask Sarah first. Sarah, could you tell us when you had your stroke? Speaker 3 (6:24) I had my stroke in December 2018, seven and a half years ago, completely out of the blue. When I had my stroke, I couldn't speak. When I was in hospital, I had only one sound. And then the four months I was... In a rehabilitation hospital, I have to learn to speak again. I had only very few words. Speaker 7 (7:06) I have Speaker 3 (7:07) to learn how to speak and read and write. I have expressive aphasia and I always struggle to express ideas. I'm okay with a simple sentence. For example, I'd like a coffee. But when I have to want to express an idea or more complicated sentence, I struggle. I think speech is the most difficult form of communication for me. Reading and writing I struggle with, but comprehension, I'm less so. And I like it quiet. When I speak, my husband pauses. The remote on the TV, if I want to speak, I don't like background or loud noises. Tiredness affects me and I have to concentrate on my words. And sometimes it's frustrating and it's tiring. Thank you, Speaker 5 (8:37) Sarah. Thank you. Speaker 3 (8:39) Neil, I'm Speaker 5 (8:39) going to ask you the same question. When did you have your stroke? Speaker 7 (8:44) I had a stroke for 17 years ago. And before that, yes, I know, 12 years, speaking tough. But, well, okay, speaking... But the language is different. And reading is fine. Reading is Speaker 6 (9:17) fine. Speaker 7 (9:18) Writing is harder, but okay. But speech is difficult to talk. And tough. How Speaker 5 (9:33) about understanding, Neil? Oh, Speaker 7 (9:37) dear God. All right. Sometimes, 90-90 % fine, but sometimes not. But slow down speaking. But sometimes, Speaker 5 (9:55) yeah, Speaker 7 (9:56) it depends. Speaker 5 (9:58) Have Speaker 7 (9:59) your improvements just gradually got better? Yes. Yeah, fantastic. Good idea. But, uh, Spartic. And? Dump. And wonderful. Amazing. Speaker 5 (10:15) So you were static, nothing changed for a while, and then you saw that huge improvement.