On the tip of my tongue - talking about Aphasia
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.
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On the tip of my tongue - talking about Aphasia
On the tip of my tongue S2 E12 - Dan's Journey: Triumph Over Aphasia
Dan's Journey: Triumph Over Aphasia
In this episode of 'On the Tip of My Tongue,' hosts Rob Edwards and Jonathan Hirons delve into the life of Dan Sutton, who suffered severe head injuries from a cycling accident in 2016. These injuries resulted in Aphasia and mobility challenges. Despite his struggles, Dan founded the Minds Over Matter Social Group to create a supportive community for individuals with brain injuries. The episode explores Dan's daily routines, his love for social activities, and how he navigates the complexities of living with Aphasia. Listeners learn about the significance of shared experiences and community support in overcoming adversity. The hosts also highlight the importance of raising awareness about Aphasia, a condition that remains relatively unknown despite affecting 350,000 people in the UK.
00:00 Understanding Brain Injury and Aphasia
00:23 Introduction to the Podcast
00:41 What is Aphasia?
01:19 Dan Sutton's Inspiring Journey
02:07 Daily Life and Challenges
02:44 Social Activities and Hobbies
04:10 Struggles with Reading and Audio Books
05:54 The Power of Community and Support
09:10 Singing and Aphasia
10:14 Conclusion and Resources
Visit the to Minds over Matter instagram account
https://www.instagram.com/mindsovermatter.osm/
Support the show: Donate Now
This podcast is funded by https://www.bas.org.uk
To watch Jonathan’s film: https://tipofmytonguefilm.com
http://x.com/buffaloloungeuk
https://www.linkedin.com/in/jonathanhirons/
The Tavistock Trust for Aphasia website
http://aphasiatavistocktrust.org
On the tip of my tongue Podcast S2 E12 - Dan Sutton
Rhea: [00:00:00] I think the, the bottom line as well is that nobody really can understand what having a brain injury is like unless you have one. So everybody can empathize or sympathize as, as, as much as they like, but somewhere where people who are living it can come together and share, have that shared experience. I think it's really valuable.
@Rob: 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. [00:01:00] 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, we delve into the remarkable story of Dan Sutton. In 2016, Dan had a cycling accident which left him with severe head injuries resulting in Aphasia and mobility challenges. Despite these significant hurdles, Dan's resilience shines through as he lives independently with the support of dedicated enablers, driven by an unwavering desire for connection.
He founded the Minds Over Matter Social Group, A welcoming haven for individuals with acquired brain injuries and their caregivers. We will be hearing Dan's story, exploring [00:02:00] the challenges he's overcome, and discovering the power of community and support in the face of adversity.
Dan's friend Solo was advertising for some, for an enabler for Dan. So I've been working with Dan for nearly three and a half years now. Is he difficult, Dan, but only because you enjoy being difficult, don't you to wind me up? Yep. Yeah, that's cool. We drive each other a bit a bit mad, don't we? Yeah. Yes. So do you live on your own Dan?
It's like bored 'cause it's,
and then this is nice and jolly and then nothing. Yeah. Socializing and just, you're a very social person, aren't you? You get bored when you're at home on your own. Yeah. Yeah. I know. But obviously gym. Gym, it's perfect. Gym. And then over down, [00:03:00] where's the talking about when you go out? Walking. Walking? Mm-hmm.
Walking. Yeah. Just there and there and there. Um, just. A coffee. Where's the gym? How is the gym near you or do you have to go to get a, a bus or, Jack. Jack. And so Jack is another of Dan's Enablers. Jack this jogging and pushing and just, uh, I was like knackered. Are you doing the gym with Jack? Most weeks, aren't you?
On Thursdays? Yeah. Obviously. What's that burger? A burger obviously that to make Mr. Burger. Hmm. Oh no. I dunno know. Maybe I've seen it once or twice. This is amazing 'cause it's um, way back here. Only you would manage to bring this round to burgers, but yeah. It's so good. Anyway, you read, that's obviously it's the [00:04:00] books.
I love that. So way, way back here. They're so good. It's just way back here and then nothing. Am I right in thinking you're trying to say that before your accident you loved to read? Yes. And you used to read a lot. It's the books. Yeah. It's one, two, but now you're not three. And then that's it. Perfect. And then.
1, 2, 3. And there's just really not sci-fi. It's fan fantasy. It's not, it's it's perfect fantasy. Who was your favorite character when you, when you were, when, when you were reading? Um, what did you like the most? All of them. All of them. Um, so 1, 2, 3, 4, 5, 6, 7, 8, 9, 10, 11, 12, 13, 14, 16, 17, 18. I think it's, that's, that's been a big loss for you, hasn't it?
It, I, I can't speak you see audio books. That's it. [00:05:00] Can't, no, I didn't know this. I was like, so yeah, we, you've got a library membership, haven't you? And we've tried taking. Tried borrowing. Yeah. Audio books. But you've not really got on with them. I didn't struggled to follow them. It's just, uh, I think be because you struggle.
It's not just you speaking that you struggle with. It's, it's understanding what's being said to you. Yeah. Isn't it as well, so it's a bit of a double-edged sword. I've noticed for you, Dan, that you'll, you'll see a, you'll see a word, you'll pick a word out on a sign or something, and, and. Say the word, you'll read that word, but it's, it's a, it's a whole sentence.
It's something being fluent. Don't you struggle with? But sometimes we'll be driving along and you'll see a, a word on a, on a sign and you'll say the word. Okay, cool. But you are, what you are doing is great to get people together. It's good. I [00:06:00] like it a lot 'cause it's um, one and two. No had to start somewhere.
I think we've only had two sessions, and I'm amazed already at how many people have come. UNO is your ultimate game, isn't it? Uno? No, just saying you love her Uno, don't you? Yeah, of course. It's, um, you know, 1, 2, 3, 4, 5, 6, 7. Seven, um, seven cards. It's a card game where each player has seven cards. You, you basically, you, you put sets of cards together, okay?
And the aim is to get rid of all your cards first. Oh, right. And, um, here's an absolute UNO demon, aren't you? We play a lot of Una. So we come here every Wednesday night. This is our local, we have fish and chips and uno and a pint, don't we? On a Wednesday. It's marvelous. Yeah, that's great. Of course. It's really nice.
When's the next, when's the next time? One, two. Okay. 1, 2, 3, 4, 5, 6. Seven. [00:07:00] 7, 7, 7. Seven. Seven. Yeah. So it's once a month. Seven. So Dan counts seven days Yeah. To say a week and then get that. Yeah. Yeah. Second Monday of the month. I think the, the bottom line as well is that. Nobody really can understand what having a brain injury is like unless you have one.
I suppose so everybody can empathize or sympathize as, as, as much as they like, but somewhere where people who are living it can come together and share and, and share, have that shared experience. I think it's really valuable and it's really Yeah, it is. And it's great for you to, to be able to take ownership.
No. It doesn't matter.
Won't come out. Yeah. But I think you're right. The, the lived experience is what we're talking about here. Yeah. Cool. Yeah. I'm, I am fine. I know. [00:08:00] Yes, I am. Fine. I'm fine. Fine. Fine. Fine. No. Oh, on camera as well. You snob me on camera, so that's why I invite you around for a barbecue. Now you've done it? Oh yeah.
Solo the choir. And then like, um, this is like, oh, this is song and this thing here. Um. And then this lunch here, and then, um, oh, well done. Wow. It's, oh, are you talking about when you went to church yesterday with solo? Yes. And I was like, what? No, because it's um, and I was like, I don't understand. I was.[00:09:00]
Management random there, random things. See? Come on. So you can't sing. Now this is, we're going back to what we were talking about. You can't sing, is that right? Sorry? You like to sing? Oh yeah, of course.
The, no, the choir in, in church. You sing more fluently than you speak. I've noticed you'll sing along to songs that you know and all the words will come out. No. No, but that does happen though, doesn't it? When you're singing, if you sing a song, you know all the words will come out. It's like, um.
But you can, you can hold a tune then. Yeah, I know. Yes, you can. 'cause you've just sung something. Yes. Yeah. You've just done it. So I think that's a yes. Yeah. But some people with Aphasia you can sing, but can't properly speak the way the brain worked. We used to see it [00:10:00] when I used to work in the singing for the brain groups for the Alzheimer's Society.
We'd have people with dementia that had become completely nonverbal. But would sing every word to songs, full songs, but may not have actually spoken a word in a, in a couple of years.
Thank you. And thank you to Dan for doing this.
Loving the podcast. Subscribe for more episodes and support the journey. Your donations help keep the show thriving. Please go to tip of my tongue film.com. Thank you for being part of our community. 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 SAY Aphasia, or one [00:11:00] word.org or the Aphasia page of nhs.uk.
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