On the tip of my tongue Series 2 Episode 2 - Pete Coady, Say Aphasia Darlington

We're talking to Pete Coady, the peer leader for Darlington and Bishop Auckland, Say Aphasia.  Pete was a salesman for Mondelez Cadbury before he had a serious road accident that left him with aphasia

https://www.sayaphasia.org

Transcript

 We're talking to Pete Cody, the peer leader for Darlington and Bishop Auckland, say aphasia.  Pete was a salesman for Mondelez Cadbury before he had a serious road accident that left him with aphasia.
 

So I'm Peter Cody and I'm now 43  and I run two aphasia groups in Darlington and Bishop Auckland, the North East of England.  Six and a half years ago I had a major car accident  resulting into getting airlifted out of a crash site in ICU, in a coma.  And in a total of 11 months in hospital.  I left hospital in a wheelchair and  I'm now classed as disabled.

And having aphasia was hard to accept. And then dealing  language breakdown was, was quite isolating   

what was your job before, before the accident? 

So I worked as a sales representative Cadbury's

covering from  Carlisle, South Lakes down to Newcastle and down to  York.

So it's obviously sales is a really,  it's a, it's a hard drop from sales to where you are with aphasia.

Massively, massively  I was seeing customers. Has about  customers, so I'm seeing them monthly and presenting about their numbers, their financial numbers,  new products, and I was meeting them once or twice every month and then  not being able to speak properly and not being able to drive was another thing.

So, I've lost my ability to drive.  So, yeah, I'm sad.

Did you, have you got your license back or are you still not driving? 

No, I've tried it, and it's not for me,  because, so, I, I went back trying to drive some  some lessons. Well, yeah, it wasn't, wasn't my thing,  which is a shame, because I was driving  we had  probably about 30,000  miles a year for driving down to Birmingham, Carlisle from up to Newcastle, to York.

So quite a big area.

So what happened with the, with your job then after that?

  And they were absolutely fantastic.  Mondelez were really, really good. They supported me through it.  And to be honest, it was too much for me to go back.

 So you do, you're doing what you do now, which is running the aphasia group. 

Yes, that's right.  Yeah, I run two groups in, in Darlington  ans Bishop Auckland is just south of Durham. So we've just started that. And speaking to the speech and language nurse  in the area, they thought it would be great if, if we could set  up new group, which will help. We've got a lack   opportunities in the north of England.

There's Nesta based in Newcastle, and Skipton's Aphasia, and that's it. So, I, I felt quite isolated when I first came to Oxford and thought, right, okay, there's an opportunity here. So I wanted to give something back to the community, so I started up my group. We had started with two people, and now we've got about 16 people 

It's interesting I I used to go to the Exeter group and it's the same story. They start with two or three people and, you know, it grows.

Yeah,

that's it.  It's getting to word  out

 There is something available and it doesn't matter, you know, if, if you just come have a cup of tea, coffee, that's fine, you can do that. It's having somewhere out there to, to go, so don't feel afraid. 

And how do people find you?  of mouth? 

 It's word of mouth. Speech and language  teams and they. Yeah, and gave the information across and local doctors, surgeries  but yeah, 

 and so the SLT, the speech therapists have been working with you now when, when you do your presentations 

 yeah, I started off with one  James Cook, a hospital in Middlesbrough, where I went, she was absolutely  great. She was fantastic support, and we started the group in Darlington, and again, because I was seeing speech, and language  nurse, KB, she was just terrific. She used to visit every month of ours and really supportive it.

And it's just grown from there that I'm in touch with them all the time.   they  bring new patients across. 

That's good, isn't it?  Because it's, it's, you're right, the isolation,  either personal or otherwise, geographically, is the problem, isn't it? 

Aphasia is, it's, to be honest, a lot of people walk through the door for the first time and they do, they feel afraid and unsure about what And getting  the  word across is quite hard, so we try to make sure that the room's got a chilled experience.  Tea, Coffee, Biscuits, Sit and have a laugh. 

Yeah, there's always biscuits, isn't there?

yes, there

yes 

They come from, Cadbury's.

yes, there's area

wonder why, yeah.

I had some chocolate they've sent me through  some other bits and pieces. Oh,

Yeah,  it's interesting because your story is very familiar  to me because I'm talking to lots of people now and the what your  What you're experiencing is exactly the same and not exactly the same because it's different but  the the overall problem of not being able to connect with people and also  lacking, Communication is the problem, isn't it?

 Yeah, is, it's, you, you go to a place for a coffee and a shop and  that  they don't know what aphasia is. I'm trying to  for, just to, to get the word out of that. There is a disability that is called aphasia, 

so I was going to ask you the, the people that come to your group what sort of level of aphasia have they got? Because obviously everybody's slightly different, aren't they? 

Well, I'd say it's, it's completely different. So, some people have got  can't really speak at all. hard for them. Other people, they're getting better. They're getting the words out. 

So have you improved over the, have you found doing what you're doing now, does it help your communication, your personal communication?

 Definitely. I was, I was, like you say, in the past, I was, I don't know, in front of people, presenting. In conferences, we did 50, 60 people. And when I came to hospital, there's no way I could stand up and be able to but that's now changed. I say I'll stand well, sit in front of a room full of people with aphasia, and now I'm quite happy to speak.

  communicate.  And we've got a presenter, so our projector  screen and a screen with a, with our group quiz we do every month.  And  being able to, to present again to people was great. And I did presentation for doctors and nurses, speech language teams. Last year and again, that was, that was great.

And being   to run that group has helped me a lot. 

Thankfully, it does get better for some people. 

It does, does 

Because also being an ex salesman as well,  it's doubly hard, isn't it, really?

it is. Yeah. 

you naturally want to talk to people

yes, I do. I want to be able to talk to people. It's quite interesting that when I go for a drink with the guys and things like that, they know exactly I've got aphasia, but I'm really quiet now trying to listen to what everyone else is saying. And I've had a couple of people said to me about Are you feeling all right?

And things like that. And I am. I'm fine. Well, I just  I'm not  positive as, as positive as he used to be talking. So I'm really quiet. 

because the thing is, you can't, it's this, in a group, it's difficult to keep up with with the conversation. I mean, you can understand it, but to respond is quite

But, yeah, just yeah, just trying to be quiet



You've got an online group as well, haven't you? You do

something on Zoom, is that right? 

Zoom, yeah, we just a peer leader meeting every month. So just how the groups are going. Because like I said, I've got two in the North East, but we've    with the with two other groups and they're based down from. Wales down to the south east of England. So quite big now.

I've been in touch with Colin and he's very positive about how things going. Obviously he wants more people to get involved. I don't know how did he come to you or did you go to him?  How 

no, it was a guy, we were on another call with Essex University  and they had students  SLTs. ,    there was a guy on the call mentioned about, Say,Aphasia.  I spoke to Colin about  opportunities in the Northeast, you know, and that's what we did.

that's started.. So do you think there'll be any more in your area? Is, is that, is that the plan?

specifically, but for, for say, aphasia,

But, like I say, there's some opportunity to go further east, so to  Middlesborough area. Because People with aphasia  or take, of my group, I would say only 20 percent should drive, everyone else gets lifts  so, in the Darlington area, there's what, 137, 000 people?

 Which is quite big, but And, yeah, you've got Milfra, which is bigger, highly pull, so there is something now there, but it's people getting down to Darlington and to,  be able to deal with it. 

So it's, a geographical problem, is it?

Yeah, it is.  And that's why Bishop Auckland again, the catchment areas is quite big. There's small  towns all go around the south of Durham. That's able to Bishop Auckland's in the middle of the south. It's quite, quite a good location.

But it's getting people there is the problem, isn't it? 

Going back to the thing you were saying about people being, feeling isolated. 

think that it's, it's it's getting that,  also getting that message across, isn't it? You don't have to be isolated. 

We have a, a group that runs  once a we do a local quiz. 

A lot of local quiz. We do a quiz and everything. There's no prizes or winners, losers. Just people, I don't 

know. 

Just, to have having a 

yeah.

Yeah, exactly. Yeah. 

And that's the, one of the things that came out also is that it, it sounds like it could be  a bit grim, but of course people like, have a good laugh about these things,

don't they 

Despite their own their problems, they are happy to have a bit of a giggle about things 

 So, any plans then, Pete, for the future on what you're doing? 

like I said, we've just started the Bishop Auckland group, so it's hopefully, you know, that'll grow in the next four years. It'll get bigger.  We've had a couple of people in the DAL group have asked me  if I could do another day once a month, so that could be an opportunity, but like I say, Middlesbrough is another cashman area, so this is an opportunity 

got to go for them.

Ever the salesman. You said something about talking to the the GPs. Is that something that Does that happen a lot? Have you managed to get to the GPs as well as the SLTs?

 I've not, but we're quite a volunteer Pam   she's really good. She'll get,  get things  moving  and Betty as well. She's really  Just, they'll call into  doctors, surgeries, and just get the word out, 

Right. So what do they do?

Do they leave some material, you know, a flyer or

Yeah, we've got flyers and 

That's available.

That's good. 

 And I, we've just   some across to the  South Durham SLTs, so I'll give out to patients.

 

So there's, there's plenty of opportunity. 

Oh yeah, Yeah, 

Well, I mean, on my side, obviously we're doing these podcasts, but also I'm just thinking you probably know I made a film a couple of years ago when I first started having this problem. But we're thinking of doing another film next year.

But talking about talking to people with aphasia with  somebody, I've got somebody in mind as a as a professional, should we say? We're thinking of putting together a kind of little film with different people with aphasia, talking to this person. To try, again, to try and people to understand what aphasia is.

Because it, it, you know, I know, that nobody really understands what, what goes on,

really 

definitely not, no. I was on the phone the other day to,   I had to apologize, well, I sort of had to apologize to say, look, I've got aphasia,  can't get my word out. And they you know, I, I, I agree with what you're saying, but they'll support me.  that was quite nice.

There 306, UK, and Costa?

that's the number, yeah.   You do well, actually. I think you do really well. And people, generally, people are okay about, you know, if you have problems with your, you know, getting your words out. 

Oh, yeah, 

yeah

they do. Friends and family obviously know

 It, People in shops or bars or whatever, they if we say I've got aphasia  they're completely  

you got a little card or anything? Some people have cards, don't they? 

yeah. We've got a Say Aphasia card saying that on the back Saying, oh, I've got aphasia, 

haven't I? 

Yeah, that's good, isn't it? All this sort of stuff helps, doesn't it?

Yes, it 

Great. Well, this is fantastic. That's, that's great. Thanks, Pete, for doing this. It's really good. And it's, it's good to talk to somebody who's also got the problem, rather than talking about people who have got the

problem you know, we try and obviously we try and get people who will talk about aphasia. In, as I say, in a professional sense, but we need to talk about people with aphasia and see, you know, and let them to talk about what their problems and their, their take on it,

  I do think that does help that the groups we run, Say Aphasia Run, it's run by people with, who've got aphasia.

We know what people are going through. We're not sitting in front of people  trying to guess what they're going through. We actually, we know

 I think you need to have somebody in front of the camera saying, this is what I've got.  All the things we've been talking about

 I go into a shop and I I've got it in my head what I want to say, but of course,  because you get kind of I suppose nervous  you run into problems, even though you've got it in your head.  I want to go buy some screws, whatever 

Doesn't come out.  

it's exactly what your  your line  your  say line there,  on the tip of your tongue, and it is, it's, it's, it's right, it's, the word is almost there, just you can't get 

is there, but it's not.  But we live with it as best we can, don't we? 

Yes,

do what we can. Yeah. And I think you're doing a fantastic job up there in the North East. Hopefully you'll get more help as you go along. 

Hopefully, Yeah,

Yeah. Well, thanks very much, Pete. Thanks for coming on the

podcast



Excellent

but I'll send you the links, of course, so you can pick And if you pass your, my stuff on to your people as well, that'd be great. 

We've got one or two people that might, might be interested.

Okay, that'd be good. 

Yes. 

 Thanks very much, Pete. Good to speak to you.

No worries

 You too.

We'll be in touch.  Take care.

Yes. All right. Take care. 

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