Jonathan Hirons's journey following his stroke and diagnosis of aphasia is both inspiring and informative. Here’s a summary of his experience and insights about aphasia:
Jonathan's Experience with Aphasia
1. Initial Incident:
In January 2019, while in a business meeting, Jonathan began to feel strange and soon realized he could not communicate effectively. His colleagues quickly called for medical help.
2. Medical Emergency:
He was rushed to University College Hospital, where scans revealed he had suffered a stroke due to a bleed on the brain. He spent five nights in the hospital and was diagnosed with aphasia.
3. Impact on Daily Life:
- Jonathan struggled with basic tasks such as speaking, reading, and writing. - He had memory issues, recalling only his postcode but not his full address or other personal information. - He faced challenges in understanding spoken language but could still sign his name.
4. Support from Family:
His wife, Ann, played a crucial role in his recovery: - She encouraged him to read aloud daily and used flashcards to aid in word recognition and writing. - This early intervention was vital for his rehabilitation.
5. Progress Through Therapy:
With the help of speech therapy, Jonathan made significant improvements: - He regained much of his ability to read and write, although he still experiences difficulties, especially when tired.
6. Advocacy and Awareness:
- Jonathan has turned his experiences into a creative outlet by producing films, including "On the Tip of My Tongue" and "What is Aphasia?" These films aim to educate others about aphasia and its challenges. - He actively shares his story to raise awareness about aphasia as a hidden disability and the ongoing need for support beyond initial rehabilitation.
Understanding Aphasia
Aphasia is a language disorder that affects communication abilities, including: - Speaking: Difficulty in forming words or sentences. - Understanding: Challenges in comprehending spoken or written language. - Reading and Writing: Problems with reading text or writing coherently.
Key Takeaways
- Aphasia is often a result of brain damage, commonly from strokes, and can significantly impact daily life. - Early intervention and support are crucial for recovery. - Awareness and education about aphasia can help reduce stigma and improve support for those affected.
Jonathan's story highlights the resilience of individuals facing such challenges and the importance of community support in their recovery journey.
Navigating Conversations with Aphasia: Insights from Iain Stansfield
In this episode of 'On the Tip of My Tongue,' hosts Rob Edwards and Jonathan Hirons explore the intricacies of living with aphasia through a conversation with Iain Stansfield and Dr. Suzanne Beeke. Iain shares his personal journey following a stroke, emphasising the challenges of communicating with aphasia and the impact on relationships. The discussion delves into experiences from the 'Better Conversations with Aphasia' therapy group, a program developed by Dr. Beeke at UCL. Key points include the significance of video reflection in improving communication strategies and the evolving dynamic between individuals with aphasia and their partners. Listeners are encouraged to support the podcast and can find more resources at stroke.org.uk, sayaphasia.org, or the NHS aphasia page.
00:00 Understanding Aphasia: A Shift in Conversations 00:34 Welcome to 'On the Tip of My Tongue' 02:33 Introducing Iain Stansfield 03:06 The Therapy Group Experience 04:42 Reflections on Communication Challenges 06:40 Impact of Video Reflections 07:37 Changes and Insights Post-Therapy 10:49 Future Directions and Final Thoughts 12:33 Conclusion and Resources
The other thing that I probably didn't realise was that conversation between two people, one with a phasia and one who wasn't, didn't have aphasia, it's no longer a put-up peer conversation. For most conversations between adults, you're basically of equal status. Whereas I think for most people with a phasia, there is a certain thing that you can't do. So you always need your partner to do that for you. It's no longer one-on-one. You're looking up to somebody saying, How can I help, how can I get some help from you here? And that's probably been quite a big thing for me to realise.
SPEAKER_00
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 Hieron. 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 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. In this episode of On the Tip of My Tongue, we have a fascinating conversation with Ian Stansfield and Dr. Suzanne Beek. Ian experienced a stroke about a year ago, leading to a diagnosis of aphasia. He recently participated in Dr. Beek's innovative therapy group, Better Conversations with Aphasia, a program developed at UCL based on her research into how aphasia impacts family interactions. Join us as Ian shares his experiences and insights gained from working with Dr. Beek, offering a unique perspective on communication, therapy, and the journey of living with aphasia. Loving the podcast? Subscribe for more episodes and support the journey. Your donations help keep the show thriving. Please go to tipofmytonguefilm.com. Thank you for being part of our community.
SPEAKER_03
So, Ian, do you want to introduce yourself?
SPEAKER_01
Yeah, well, and until fairly recently I was a solicitor in a in a law firm in the city of London. I I then got cancer for for for a for a while, and then as soon as I was in revision remission from cancer, I had a stroke. So now I'm I'm not working.
SPEAKER_03
But I know you're a student.
SPEAKER_01
I am yeah indeed. I'm a I'm a student in of history of art, so I'm yeah, I'm doing a sort of second degree. In history of art, which is which is very good.
SPEAKER_03
So Ian, we're having this conversation because you came to one of our intensive conversation groups, which finished about a month ago now, I think it was. And the group was delivering the better conversations with aphasia training. And there were five couples who came to the group, you and your partner being one, and there was a range of people with a range of different aphasia severity and a range of communication skills and strategies. And I guess just for a bit of context, the objective of the group was to get you all to think a bit about how conversations work, all those unconscious rules that we follow that we don't know anything about, and also then thinking about individually your own conversations together. So you did some video recording for us of a conversation with your partner, and we looked at some clips of that to look at what was working well in the conversation, some nice strategies that you developed, but also what was a bit more challenging and then thought about some goals to work on and to practice throughout the group. So it'd be really interesting to hear your reflections on what you got out of that process.
SPEAKER_01
So no nobody had particularly watched a a video of myself myself and Kirsty conv having having a conversation with each other, and and conversation is probably the one of the most useful things you can you can have with with a partner because to progress things and i and under ta understand things. And one of the things that became apparent fr the way that I can contributed to a conversation was that well two things. One one was I don't inject any humour into a conversation, partly because I've I've got a sort of freezing effect from the stroke. So the the in uh my my impressions, my my the the way that I react doesn't isn't reflective in my face. So I'm I've I've got to inject a bit more uh humour into my uh in into my into my in interjections. That was the first thing. It's about recognizing the fact that he he he's not angry about what I'm we're we're trying to have a conversation about. You know, I I I I go into a a period where I'm I'm listening and and my face is doing the thing that the face my face does. So you you c you can be misled, I I think misled into feeling that it you how come this angry how come this guy's angry? So those are the two things that we've we've we've we've been working on since since then.
SPEAKER_03
And were were those things that you I'm wondering how much the video and the video reflection allowed you to to explore those things together. Do you think that's a conversation about that you would have had about interacting without using the video?
SPEAKER_01
We w we wouldn't have had it without it being video videoed. I I think it's the the thing that v a video get gives you a chance to look at yourself uh cr critically r rather than reflecting on something back, you know, i i out of memory. So it's look looking at it with with some some some expert people as well, and you know, you know, to take taking it one by one really helped us to to to to to to to look at it and and and reflect on it better than yeah w unless it w if it if it wasn't video.
SPEAKER_03
It must have been hard seeing yourself on video.
SPEAKER_01
Yeah, it it it did it did a bit. I mean the the I mean I didn't I didn't realise th the things that were happening with my face. So that yeah, that was that was a bit dramatic. But you know, there's there's quite a lot of dramaticness to see about yourself with aphasia. You know, there's lots of different things that you're having to look at, and that was just one of them.
SPEAKER_03
So has anything changed for you after the group? What are your thoughts on it now? How helpful has it been?
SPEAKER_01
It's been it's been very helpful. I think I think for for the for the for the partners, there's been a real it it the the co the conversations for for for for patients I think I think are are fairly clear and there's a there's a there's there's something that we can work on with the fuck conversations. I think I think it was interesting for the the the the people with aphasia seeing how their partners were able to take lessons from from what what was happening in the room. So you you would see uh another partner having to support somebody in a way that you hadn't done. So it it gave a sort of a key uh that that one person was doing that that you weren't doing. And the other way around, and I think for for the partners it w it was a real a real eye opening for for them. And and and for and for and for people with aphasia also we got to see the the real range of of of of of of of access to language that people have. You know, the for me there were people that are getting better handle on it, and there were some who are still s struggling with things, and it it it it gave me a real sense of of of of of of what what what a what a challenge it was for everybody.
SPEAKER_03
Do you think what would Kirstie say in terms of the her experience of the training? Did she would she say anything had changed about conversations, do you think?
SPEAKER_01
Yeah, I I think so so we've we've taken the the the the questions, the you know, the things from the video and and tried to put them into into action and I think we I think we've we've we've seen that that happen. I mean it it's it's a it's a long it's a long process, isn't it? You know, I'm probably I'm forever in in in in in in in recovery in this and probably always will be. But but yeah, that that's been that's been a real sort of that's that's been one thing that we've we've we we've been able to look at and and and and gain from from from the conversation. The other thing that that I I I I probably didn't realise was that a conversation between two people, one with aphasia and one who wasn't, didn't have aphasia, is you you're no longer a it's no longer a sort of peer conversation. You know, for for most conversations between adults you you you you you you got you you you you're basically of of equal status. Whereas I think for for for most people with aphasia, or maybe all people with aphasia, there's a certain thing that you can't do, you know, w whether it's you know s sorting something out with it with a third party or just just speaking. So you always need your partner to to do that for you. And and so you you you you're no longer you know it's no longer one-on-one. You you're you're very much sort of you're looking up to somebody saying, you know, how can I help how how can I get some help from you here? I've you know that that's probably been uh quite a a big big thing for me to realise that I'm always going to be asking for help now. You know, and I think I I I sort of I sort of sense that with the other partners as well.
unknown
Yeah.
SPEAKER_03
Do you think finally any thoughts about any ways that we could change the training to help you feel more independent with conversations?
SPEAKER_01
Yeah, it's so could so like I said at the start, com conversation is is is is is is is is a is a is a basic tool. You know, you you need it to get through through the day. And that you know, I'm sure that you know if there were a sort of part two, you you you could get into a situation where you weren't just basically making conversations work because they've got to work, because it's it's it's it's getting around to doing something positive. You know, how can it work if you're getting around to doing something which is which which is which which is a problem, you know, where that where there is a real thing that gets needs to be got round, you know, in family life or whatever the relationship is, you know, where where s sometimes people are not in control of a conversation, you know, may maybe the partner is in control or or the person with aphasia.
SPEAKER_03
How that how how then could you navigate those kind of conversations, which probably you know has as as as different not different necessarily but you know alternative ways way through ways through So there's more challenging conversations that we all have every day about where we fundamentally disagree with something or can't come to a shared decision on something or yeah exactly, yeah. Or yeah, uh difficult issues going on. Yeah, absolutely. Yeah. Okay, part two. I like it. We'll work on it. Okay.
SPEAKER_01
Thanks, see you. Okay, welcome. Thank you.
SPEAKER_00
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.org, or the aphasia page of NHS.uk. Enjoying the podcast. Subscribe for more episodes and support the journey. Please go to tipofmyfilm.com in the description. Thank you. This has been a Buffalo Lounge production. Please follow Buffalo Lounge on all the socials.
