On the tip of my tongue Series 2 Episode 8 - Graham Hall: Bring on the nouns

Overcoming Aphasia: The Journey of Graham Hall

In this episode of 'On the Tip of My Tongue,' hosts Rob Edwards and Jonathan Hirons discuss aphasia with Graham Hall, an orchestral percussionist who suffered a stroke a decade ago. Graham shares his experiences dealing with aphasia, its impact on his career, and the challenges of regaining his speech and musical abilities. Despite losing the joy in playing music, Graham found fulfilment in music arrangement and preparation. The discussion touches on brain injury recovery, neuroplasticity, and the importance of continuous practice. Graham's story aims to raise awareness about aphasia and encourages support for individuals with brain injuries.

00:00 Introduction and Personal Story
00:34 Welcome to the Podcast
00:52 Understanding Aphasia
01:45 Graham Hall's Stroke Experience
03:20 Challenges in Music Post-Stroke
06:00 Reconnecting with Music
10:07 Living with Aphasia
14:31 Raising Awareness and Support
27:58 The Role of Family and Friends
29:55 Creative Coping Mechanisms
33:06 Conclusion and Resources

Before my stroke (2014) I used parody to comment/mock the situation in my musical life.
So I've been using that to describe my new life with aphasia. The lyrics are "contrafactum" (the substitution of text for another without change to the music) and comment on how I cope with brain damage and aphasia. The irony is that despite having musical anhedonia I'm still a musician!  

https://grahamhall.bandcamp.com

Amongst other books , Graham recommends Musicophilia

 [ https://www.oliversacks.com/oliver-sacks-books/musicophilia-oliver-sacks/]

Chapters

• 0:00 On the tip of my tongue - S2 E8: Graham Hall
• 29:54 Marker

Transcript

On the tip of my tongue - S2 E8: Graham Hall

soundbite - Graham Hall: [00:00:00] percussionist, orchestral percussionist. I did the first gig or the first rehearsal, and obviously I missed by a half an inch to hit the cymbal or the triangle, but what was the problem? Apart from I can't talk as normal as I can now, but there was no enjoyment. the music by playing music. Before, it's every day and I loved it entirely.

I used to only whistle down the corridor to the tunes that were going to be played or rehearsed.

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 [00:01:00] or could be just falling off a bike and it affects your ability to hear.

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 yet, most people have heard of Parkinson's whilst almost nobody has heard of aphasia. 

@Rob: Hi, everybody. And today we're welcoming Graham Hall to the On the Tip of My Tongue podcast. Welcome, Graham. It's great to have you with us. Thank you for giving your time so generously, perhaps, Graham, I know that you worked for Opera North for a long time. I know you had a stroke. Perhaps just tell us a little bit about what happened

Graham: it was it was 10 years ago. No problems before, no health problems, but I woke up [00:02:00] and my wife tried to get me awake and there was no response and I talking garbled and so she went to the hospital and they came back quite quickly, about 10 minutes after it happened. It's a hospital in in in Mansfield.

And what happened, was the left, left middle artery blocked blockage. So, my right arm, my left, my right hand, and right. Leg was not working at all. No speech at all, apart from and some, some drooping, obviously, on my left side my right side. Yeah, so I was off, I was in the hospital for two or three weeks and,

then home for, I think, six or seven months off from work and did every, every, when it first started I've had language therapy for two weeks every day, [00:03:00] and then it goes into two weeks every, two days every week for six months, which is fantastic.

I don't think that happens now. I was quite lucky at that time and that and that area where the speech and language therapist was fantastic team around me. And some physical therapy as well. And then I tried to get back to playing a bit of playing after seven months. 

I'm a percussionist, orchestral percussionist. So, clock, timps, cymbals, bass drum, so that, I did the first gig, or the first rehearsal, I say, for that. And obviously I missed by a half an inch to hit the cymbal or the triangle or something like that. But what was the problem?

Graham: Apart from I can't talk as normal as I can now, but there was no enjoyment to music by playing music. I [00:04:00] mean, before It's every day and I loved it entirely and he said, I'm going to be whistled down the corridor to the tunes that we're going to be playing or rehearse. So I know, I know what it was after that day or when I, when I tried to get some, get some playing back rehearsals back.

I know I was looking around thinking, what's, what's happened here? And there was no, no feedback from the enjoyment from the chills you get off the back of your neck. So that's the hardest thing. Apart from, of course, as you can hear, my speech sometimes a bit blurry, a bit up and down.

@Rob: But now it's I know it's better than it was, but it's something that I always want to get better, so I just practice it. That's what it is. 

Did you get back to being able to play competently or as well as you could 

Graham: well, sort of, [00:05:00] I mean, when I get back, a phased return, there was a concert, kids concerts, and some an opera by Wagner, which I only play offstage. So the last act, and some, some Mahler Mahler Four, it's okay. I, I, I know it was, obviously I'm not, I've stopped playing for six months, 

but I realized that where I live, I'm an hour and a half away from Leeds. So that's a problem with the, not with the, with the driving. Although first time, two or three times, my wife drove me in and back. But it's just the stamina of driving, playing, talking to the people, which is the hardest thing.

And so I, I decided to, to stop after that. And for a year afterwards, I didn't play at [00:06:00] all. But eight, years after that,, I was seeing my friend playing at the back of the, this church and I said actually I would like to play again and get some level back. So I did a bit of playing for Opera North and mainly by a chamber orchestra called Sinfonia Viva, which is based in Derby.

And I played some timpani and some percussions like that a gig, every a couple of months or like that. And I think now it is my playing is but I, it's still the problem 

@Rob: I see. That sounds awful, if I may say. It must, I mean, obviously you're a professional musician too. I know you're top draw, you were, probably still are, top draw player. You have to be, to be, in an orchestra for opera north or whatever. And obviously you've devoted so much of your life to music and you love it, obviously, or loved [00:07:00] it in the past, and that has just gone, has it?

 What about listening to music? Is that okay? 

Graham: right. I, there's no music in that house at all. my wife is a musician anyway, she's a violinist so this is a bit odd. But the way I get enjoyment from music is not by hearing it, but by laying out parts, arranging, orchestrating, so music preparation side of it. So I can obviously get the tune put into a a string quartet or a brass or an ensemble or whatever it is, and I can see the music and I can make sure that the harmony fits.

With the score, the parts, or the visual instruments. And I've now got to play it back some time to make sure the notes are correct. But apart from that, I don't necessarily want to hear it in [00:08:00] total, because I know what it will sound like. Because I was doing it previous to my stroke. 

Jon: One question occurs to me when you were talking, when you were talking earlier, Graham, was does your, has your timing gone, did your timing go, should I say, 

Graham: The first two or three months I would miss by a symbol, by an intro, something like that. Even though now when I do a bit of playing, I've got to look down of it and make sure that that is there. So not look at the conductor, don't, don't necessarily, but look at the instrument and saying it's there.

And also make sure that's quiet or loud. Because I know how it would look like, not necessarily how it will sound like. 

 Just before lockdown started, I did the La Boheme opera for Upper North in Leeds and on tour, and I was using my, my old part before I stopped full [00:09:00] time, so playing in the pit.

Playing offstage, marching into the stage, getting out again, some more offstage bells, and then back in the pit. Now that, I've been using that, that, that part, I've been playing for 25 years, every, every two or three years. So the part was ingrained into me, so I know exactly where it will be, how it will work in the, either from my end, but also from the conductor's end.

 So it was procedural memory kicks in. But if it's a new opera, or a new production, With different production like that, that will be the hardest thing. 

But it was great, it was a great, great run for it. But I get enjoyment because I was doing it, not from hearing it. 

Jon: But it, well, it's strange. It does make sense, but it's a very strange thing for you to come to this pass.

 As Rob [00:10:00] said you've been a professional musician for donkey's years and suddenly it's, it's kind of left you really, hasn't it?

Graham: I've got books and books on the brain. And books on the brain and music, of course. And there's a great book by Oliver Sacks called Musicophilia, 

and there's chapters on music and how it 

Jon: yeah, 

Graham: people with brain damage. 

And I thought it was amusia, which is people liking music, but it's not me, because I don't hate music at all.

It's more musical adonia, which means you get no enjoyment from hearing anything about music. So I can see what it is. I know how it works. That's fine. But there's no umph, which is, but it's, but it's fine because I've worked for music now and that's great. Of course, I know how to do it with the software or [00:11:00] whatever

and that's fantastic because I've got new ideas and how to fit the parts in or out. 

Jon: So, you know the technique and the technology is, is with you it is just that it doesn't, doesn't thrill you with you know, in the way that it used to

Graham: It doesn't bother me at all, actually. I know people, you say it was odd, but no, you're, you're not the only person that said that to me. But I'm, I get, that's fine, actually, because I can, I can work, well, work, I can a bit of work via that, and I can play if I want to do, and I talk to people that I want to talk to., I can work at the level that I want to do it,

because of my stroke.

It's always the problem with mental fatigue and stamina and stuff like that. It's always the problem with any brain damaged people, I guess. 

The end of the day you get tired, presumably. 

Yes. And sometimes when I'm working, I've got to orchestrate some work for an hour or something like that. After that, [00:12:00] my speech is low. I can't talk. 

Graham: Your brain globally so left or right. And sometimes there'll be a stop and say, I can't do that. I can't talk now. Wait for half an hour and come back to me. 

Jon: that's quite common, isn't it? With aphasia. 

Graham: I mean, a phase is a bugger. It's, it's really a bugger

Jon: we're stuck with it, unfortunately. 

Graham: I'm much better than you used to be. I, and I've got some audio some audio files that on my phone. When I was talking on my phone, so I know how it was before and how, how bad it was before and maybe five years afterwards, I was still thinking, my speech is so talk, at all.

 I realized that actually my, my speech is much better. And I'm talking to you and not that's fantastic. I couldn't have done that

years ago, three years ago, at this level. But, but when I stop and think about what I've got to say [00:13:00] late in the next sentence, then I can't find the words to describe it. So I don't want to, so it's more, it is now more automatic for speaking, whereas before it was And stamina wise, it's really difficult. 

Jon: People say this to me, if they don't know you, do they realise there's anything wrong with your speech? 

Graham: Strangely, I've been talking to some students in Derby, the hospital on their fifth year and they're testing different people with brain damage or brain problems, Parkinson's or, you know, My aphasia or MS is like that, but the questions they ask to me, they never ask me about speech. So they can't tell what's the problem with me because they can't talk and ask me to play a sentence or to write a sentence. They've just said, I can't do that at all. But of course, on [00:14:00] that list that they've got to do, the module, they don't they won't know that I've got aphasia.

And then when I get in the group and say about aphasia is, and then they see what's the problem with language and sounds, and then they realize what's happened to me. That's two or three sessions is about 20 or 30 students. Only two people have heard of aphasia and that is their fifth year 

of being a doctor. 

@Rob: That's well, that's really why. Jonathan started the podcast, I 

Graham: Yeah, yeah, 

@Rob: To try and raise awareness 

because nobody's, yeah, that's what we keep saying on the podcast that nobody seems to have heard of it.

Jon: we're talking about people who, in their fifth medical year not, even they don't. Here. I haven't heard about it so much. Not much chance with anybody else really. 

Graham: I mean, , I think, they realized that I had a stroke because my right [00:15:00] side is a bit, and also in the test for that the strength is less on my right side. So they realized I had a stroke.

But apart from that they wouldn't know. Quite simply because of funding, I guess, I used to do some students at Sheffield, the Speech and Language Therapy 

course, and every two or three months, I'd go up and talk to other people, and other people with aphasia and different types of aphasia.

And that was great. Great for them to realize how our language impacts a person's life, but also the different types of aphasia. But because of lockdown apps and funding, they've stopped. Which seems bizarre, because people have got to know about aphasia. And particularly if you come with a speech and language therapist, which is a great, great career. It'd be great if you can talk to actually a [00:16:00] person that's got it, so they can realize How they can cope or not cope. 

@Rob: 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.

Jon: One of the things that we are starting to talk about, and I've got a podcast coming up with Headway to talk about brain injury. One of the things that, that we're trying to get in people to understand is that there are people who have aphasia who are still of working age 

 And are finding it difficult to get back into work.

And you're a pretty good example of someone who's, is managed to overcome. your aphasia enough to be able to do some sort of the work that you used to do in a certain way. I'm going to talk to Headway about [00:17:00] this particular subject because they're quite keen on this.

Just not just for aphasia, but for any, anybody with head injuries. So for people to get back to work, because, if you're And we have people, have talked to people who are in their 30s, who've got, another 30 years of work in 

 But employers don't want to take the risk, and I think it is a risk, of taking somebody on because something might happen on their watch. 

Graham: I was quite fortunate Opera North I've got six months off, which is fine. And then gradually get better. I know that the management at that time would help me as much as I can to get better. I'm sure I'll be trying to get better at some point for the future, maybe half, half time or like that.

 No problem with the, with the management side, but it's just my, my mind. I don't want to be as a bad player as I was, and that bad player is in my head, [00:18:00] not necessarily. the person that was sitting next to me, Chris, my friend, says, you say, when I was back, he said, well well, while you're playing, he's a good or bad as before., but obviously it's internally, I know there was a problem. Before my stroke happened, I was using some library work for laying out parts and scores and orchestrating ourselves, so I've got, and I've been doing that for 20 years before my stroke happened

Jon: Obviously therefore you've got some sort of input into this because a you've come back to work that you did before your stroke 

so you are arranging and so on and so So you're carrying on to work. The only difference between maybe you and some others is of course you're I assume you're freelance, so therefore it's a slightly different situation as if you're going to work for a company.

Somebody else made the same point [00:19:00] on a previous podcast. He said, well companies, don't want to take the risk in case something happens to you. Sorry. on their watch, and of course they will be liable. 

Graham: Yeah, I I get that. 

Jon: And I don't know whether Opera North would have the same 

view on that with you. Perhaps you don't know the answer to that, but 

Graham: The actual the organization Opera North is, is quite good to, to help people, any, any problems get back. , and even, and even this problem with with the health. They'll get off for six months and then, half time to just be acting like that and then get, gradually get better or less, depending on the, on the skills of that executive player and also where, and where that player sits in the orchestra, 

Jon: I think we've done here on that particular point. I think you've got some input into it. `And as I say, we'll We're going [00:20:00] to kind Of wrap this, wrap the idea up into something later that we'll talk about people's, want to say, self worth is not the right word really, but we want people to feel that they've got some, contribution

Graham: Of course! 

Jon: Even though may, it may not be a paid position, but they want to have some.

Input into the company the community, that sort of thing. 

Graham: I think there's more funding strangely for people that has neuro problems than before, 

Jon: Yeah, 

Graham: because there's funding for that, which is sometimes going, sometimes bad. But that, I think neuro diversity is much more the, the, the key word these days. 

Jon: that's right, yeah, exactly. 

Graham: so that's good.

I, I guess, 

Jon: We all get lumped into the same pot though. 

Graham: yeah. Yeah, I, yeah, I mean, it's, no, 

Jon: It's what it is. 

@Rob: You're [00:21:00] doing orchestration work now, obviously.

Yeah, so you're not still working for Opera North? 

Graham: Oh, no, no, no. 

@Rob: Although you may get commissions from them to do 

Graham: I work for Opera North sometimes. Last time I worked was a year ago, maybe, at that. But before, I've been doing some library works like that. Even with the Sinfonia Viva, it's for laying out parts and,

scoring like that, or new arrangements, all for different people. So that's, you know, it's freelance work.

But actually, I always think, Music was always about freelance anyway, you never know where your next gig will be. 

@Rob: oh right,

Graham: heard me say you've got to know what that mindset is. I mean, it's a bit like acting 

@Rob: and, that's what you mainly do now, plus a little bit of performing every 

Graham: I guess that was my gig these days, which is fine, but also it gives me the time to think about how the brain works or doesn't

And I said, you got books on. On the [00:22:00] brain and music and also I'm more on with the language side of it.

You never think about how language works unless it won't work. 

Matter in your head is fantastic what we've got and so I, want to know about what's happened to me and why it's happened to me, not because of my stroke, but because of the, neural pathways, how, so how that would work or not work.

Or how they work together, or not work. I've done six or seven studies on aphasia. On the on Manchester university. And also they've moved now to Cambridge and they've, sometimes they get some tasks and they put me in the scanner and, and figure out what's lit, what lights up or what's, or what's light down.

And that's Aphasia talking now, you have to 

@Rob: Yes, I know what you mean. What doesn't light [00:23:00] up? What stays , 

Graham: exactly. But also, of course, what works underneath the damage, because you get the MRI scan, it's just black. And anyone who would look at that scan was saying, as a doctor, said, you realize that scan, Graham will not talk now, ever. 

 So even though the scan is quite black, there is working below the damage.

And, being a musician, all musicians, but definitely professional musicians are using your brain left or right. 

When it happened, some of the language processes moved to my Right.

Graham: side, so it's not, not as fluent as it was, but it gets language, what had that words sound like,

 Music works for different brain regions, includes working memory, decision [00:24:00] making, motor coordination, hand, hand or coordination, memory, Low term memory, conceptions, Cosemic knowledge, Emotional circuitry, The control of meaning and space, Global and detailed perception, Strategies, Sustained attention, And other things. That's what the brain works for a musician. Not as fully as it used to be, But it will work. And gradually, the brain works out what's happened, and what happens for me is my speech gets better because I've got a musician's brain.

it's always strange that I'm talking about my left damaged brain, about my left damaged brain, and that's, isn't that quite incredible how the brain works? 

There's two books by Norman [00:25:00] George called The Brain's Way of Healing and the Brain That Changes Itself and that he written in 2013, 14. And basically that's about neuroplasticity.

That's how that works, 

Jon: quick question that just occurred to me while you were talking is When did you know you had Aphasia? When were you told? In the timeline. Did you know straight away? Were you told straight away? 

Graham: I think so. Yeah, I think so, because obviously when I was two or three days in an in an IC ward, I think I was told, I can't remember because I was I hear it, but my wife Was

told, this is aphasia. 

Jon: reason why I ask is because we had somebody in the last podcast and the hospital, didn't know what was wrong with him. No, and it took some months, I think, before they worked out that he'd had a stroke. Yeah, honestly, this is, well,

@Rob: this [00:26:00] Nigel? 

Jon: this is Nigel? Yeah.

or his wife says, that they didn't, they sent him home and said we don't know what's wrong with you.

They didn't think it was, they didn't know it was a stroke, or didn't say it was a stroke. They've, they, they kind of got back to the hospital and said, you know, this is not right, you need to see, have another look at him. And it was some months, I think, before he, he realised that why he was like he was was because of aphasia.

Like you, I knew I was told straight away, you know, within 48 hours. Because they did a scan 

Graham: after the first two or three days in the hospital they started language therapy. But it was just, but it was only about a half an hour a day, but I used to practice on my own by practicing and spelling words and trying to spell words and not trying to spell words. You don't want to just use the topics you want to do and then stop [00:27:00] for an hour. You've got to go on and on and on and on. You can't just do hours for a week and then think it'd be better. 

Jon: You have to use it all the time. That's what you're saying. Yeah. 

Graham: No, no, no, exactly. 

Jon: that's probably why you and I and many others do get back to some sort of 

Graham: Yeah, I think so. 

Jon: Yeah. Because if you don't If you don't use it, you lose it, as they say. 

Graham: Oh yeah. And also because a musician like myself, you want to get better. Whatever the part you're doing, or the music it is, you want to get better for that part, or for the, or for the section you're in it, or the Or the orchestra or the chorus or the, or, or the audience. So , you've got to get practice, otherwise you won't get work, actually. 

Jon: Or you won't get better. Or you won't be able to function.

@Rob: Did you get support [00:28:00] from your? Family, Graham. 

Graham: Oh Yeah, My wife is incredible. We haven't got kids but she was, is and still is fantastic to me. I, I don't know if, if I want that, that person next to me from day one, I won't be there now. I'm 

@Rob: um, 

Graham: A, because A, we love each other, so obviously, but also, she's a musician as well, at a,

professional level, so she knows how music works, or doesn't work, so she knows how to figure out problems and get it so that the

content is correct yeah, yeah, 

Many, many times that people have problems with their marriage, because that person, or, or family don't understand.

or won't understand what's happening with a brain damage patient. 

 My mum, she didn't really get what's happened to me, 

 She'd be [00:29:00] 70, nearly 80 when she happened. So, she really, really don't understand what's happened to me. And other people's friends don't really get. what aphasia is. 

 All the musicians I've got know exactly what's happened and they try to cope with me and make sure and how My language works. People that aren't musicians, a couple of people, they don't get it at all. But it's good that person I met nearly 40 years ago.

I'm glad I met her, actually. 

@Rob: That's a wonderful thing to say.

Graham: Yeah. And it's just. Remarkable that she's still there. 

@Rob: Well, she loves you. 

Graham: Yeah, 

@Rob: She thinks you're worth it. 

Graham: Oh, yeah, I think so. Yeah, I think.

Jon: But is there anything else you 

Marker

Jon: want to say?

Graham: Well, the only thing I say that, the way I get people with strokes or [00:30:00] brain damage person and they want to know other people know what's happened to them. What I do is, because of the work I'm doing with the music preparation side of it, is there's a piece of music I've got, I've got some lyrics, I get rid of the original lyrics and put new lyrics to describe the song. So, for example Georgia on your mind is aphasia on your mind. 

And, and I do like to be beside the seaside is the lesion on the region. 

Sending the clowns, which is a song now it's send in the nouns. 

Graham: They're all on my, this website called Graham dot Hall dot.

bandcamp. com and all is on that thing, which you can hear it and with the lyrics 

 I'm not playing, I'm not singing it because my playing is really bad. I'm now about a semi quaver, sharp or flat. 

So I've used some software. 

 [00:31:00] It's a good bit of software actually, a Japanese thing and didn't male or female or vocal or, operatic or rock or Something like that.

And you can figure it out, the sound, and so that's, that's how I did it. And I think when people hear that.

they can maybe get a glimpse of how sound works for me. 

@Rob: Does this software you were talking about, does it make you sing in tune? 

I could do with that I could do it. I could get my career going 

again. 

Jon: Get your Bob Dylan songbook out as well. And you're off

. Graham, it's been great fun and thank you 

very much. 

And thank you. Well, your insight as well. 

@Rob: Oh, absolutely. Listen, Graeme. It's been quite inspiring listening to you. Yeah, all power to your elbow, mate, if I may say that. 

Graham: Not. Or 

@Rob: Yeah, it's been absolutely 

Jon: Yeah, it's been great. Thanks very much, Graham. 

Graham: Thank 

you. 

Bye.

@Rob: [00:32:00] Bye. Goodbye.

Aphasia, aphasia It's always

on my mind Disorder of the brain Use member thoughts and rhymes Oh My kerfuffle A physical struggle As brain and mind converge It's neurocontrapuntal That keeps me in [00:33:00] the line

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. 

That was On the Tip of My Tongue, the podcast dedicated to raising awareness about aphasia. To listen to more episodes, click on Support the Show in the description.

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