I Have spoken to my GP and he’s absolutely brilliant. I’ve got a lot of confidence in my GP, and the hospital wereI thought the stroke clinic at the [hospital] were absolutely fantastic. And, they told me more than I had to ask, they answered nearly all my questions, and I thought they were really good.

And that was a session with the nurse there, was it, that was helpful in that respect or was it all thedid you see different personnel there?

The nurse and the doctor. They were both very good. But the nurse obviously spent a little more time, and she explained everything and I found that really helpful.

My first reaction was I’d had a stroke. The word TIA I’d never even heard of before, and mini stroke, I just thought strokes – a stroke’s a stroke, you know. Because I’d lost my voice I thought this is the start of the – like the advert, that FAST advert, you know, part of that is the speech. But it come back, that was the thing. It come back very quickly, and it’s been explained to me it’s just like a little blood clot going to that part of the brain, then it passes through. But while it’s there you lose that, whatever part of your speech or your sight, whatever it is, for the time it’s there, you know. For some people it stays there and that’s it, they’re disabled.

And when did you first hear that term, TIA? Was it the first time you went to the doctor he said that?

Yes, yes.

And how did he explain it, or how would you explain sort of what TIA is?

He explained it to me as a mini stroke, a very mini stroke, he said, and lots of people have them and don’t realise they’re having them, or ignore them, which is the worst thing you can do, because it leads to another one. And if you ignore them all, eventually you will have a major stroke.

They gave me a stroke folder which was kind of full of, you know, what to do and how, when to seek medical help and things like that. Which I’ve read cover to cover more than once.

And do you find it useful?

It is useful, yes. Yes.

And reassuring? Or
it’s reassuring that you’re not the only person in that position because it’s kind of got, you know, just little pictures of people, younger than yourself who’ve also suffered with it and it’s kind of like, Oh right, actually well maybe I’m not as old, you know, as, as I feel sometimes now that this has happened to me

You know, people in their 20s and 30s saying, you know, and describing the symptoms and actually people have ignored them and I think, Well, actually maybe I wasn’t so stupid as I think I was in ignoring them

Do you think it’s a common thing that people do ignore those kinds of symptoms?

I think they do, yes.

We’re both lucky to be research scientists, my wife and I, so that we’re able to access all of the professional research literature. This is done through my old college, which is in the States, and so I can just get on to the library system and I can read all the Lancet articles and look at all the research and journal publications. And this is a great help in finding out what’s happening.

And it’s really terribly important to find people who can help you with making this correct answer.

I was very lucky. My wife is unbelievably supportive and we have access to all of this material. We weren’t able really to find, searching the actual web out there, any information on this. The [study name] people, we actually called them up and they had to send us the results, because apparently at the moment they’re not available out there on a website. And of course the literature that’s in the journals is really not generally available to anybody. I don’t know how somebody else would make this decision. it’s scary, it really is scary. And, you know, you’ve had a stroke and they’re going to cut your arteries open.

I’ve taken a variety of routes. The first thing is that following the meeting at the hospital, and the investigations, I was encouraged by my wife to take a second opinion. Now I’m very much a child of the NHS, so this was a difficult thing to do. My wife happens to be French and that seems to be part of her culture. But she argued with me that I work in science, science doesn’t rely on a single observation, you typically take a range of observations. So, okay, I agreed and met with a consultant in the same hospital. After some research we found somebody that was at the top of their profession and had an hour-long meeting with him and took a lot more advice. And we compared results. Fine. Naturally I also turned to the Net and searched for TIA, stroke, through many, many pages, also spoke to friends who are in medicine.

So took a variety of information and concluded that I was now at slightly raised risk and it was in my hands to do something about it, which is to reduce blood pressure, and to be aware of triggers. So to stay away from great stress, to – which is tough, actually [laughs]. That’s the tough one. And not to become over, overtired, generally to try and be fitter.

The local stroke person used to come in and visit the, the, the ward quite regularly and she kept in touch until she retired. And she was always kind of in inverted commas there’ if I wish to, would, I can’t remember, remember her name now, but she was, she was a lovely lady. Older than I was, I think she was 65 nearly 70 but she, you know, you could ring her up or get, Oh I’ll pop roun and talk it through with her and you know, she was a good source of, Well if you do this and contact thatrdquo; Good source of information.

And that was from the Stroke Association, was it?

Yeah, she was the local Stroke Co-ordinator, I think, but I don’t think there’s anybody in [local town] now like that.

And can you
it’s a shame really.

Can you remember what kind of help she, what kind of information she gave you that was helpful?

Well, it was just guidance. Where to go I think you ought to do so and, why don’t you investigate thi because basically she kind of not exactly took over from the Care in the Community- the CART team, but, you know, once the, the consultant has said, Well, OK, Mr [surname], you can go back to wor, you know, Well, I’m not fully mobile, what do I do

I think the nurses did sort of say did give some information but even to this day, I mean, I know, I know what a, a mini-stroke is obviously now [laughs] but even to this day I haven’t got, I wasn’t given that much information. I don’t think anybody actually sat down and said, This is what happens and these are is, these are the results and this is what is likely to happen and this is how you are likely to end up

In fact, when I came out of hospital, or am I jumping the gun too much. When I came out of hospital Shirley and I sat here and we, we just didn’t know what to do. We were completely lost and alone. Absolutely on our own.

So, I mean, one of the questions I have here is, you know, were you happy with the way you were told? I mean, it doesn’t sound to me
No, not really. I like, when something’s the matter with me I want every nut and bold explained. I want to be told what, why, when, how and I, it wasn’t. It wasn’t until I actually went on the computer some days later and looked for strokes and found the Stroke Club, website and sent off a message that literally said, Please help me. I don’t know what to do. I’ve had a TIA, I think Can you help me And they were brilliant. Once I had made contact with them I thought that everything was great. They sent a volunteer out who came and spoke to me.

You talked about the support group, you know, the Stroke Association and the help that you had through them, have you used any other health information websites at all or found anything useful or not useful either way really?

No, I haven’t really. I tend to find rightly or wrongly perhaps I’ve just come across the wrong ones, I don’t know. But I tend to find these websites either have so much information that you’re left even more confused than, than when you started off or you get so much information and then you, you’ve either got to join their club or something and that involves cash. I did find one like that. You’ve got to pay to join go any further which was

So, no I really haven’t. I’ve just I mean I’ve got some very useful information, some booklets through the Stroke Association, the care, the coordinator has come out and chatted and given me all the information I need. So we’ve done it that way.

Internet. I found the Internet enormously helpful. Very helpful. There’s, there’s a whole heap of information out there, it’s knowing how to get hold of it. And lots of sites are linked so one site might be recommended to me, it might not have quite what I want but on the computer web, website there’s usually a box saying Links, that’s the one to go into and then go and find something. So although I haven’t got a diagnosis, I have got one doctor said he thought it might be and that was good enough for me. So I’ve, I got in touch with other people shamelessly hunted down associations and societies and groups and asked for help.

And is that something that you would tend to normally do? Ask for help? Or is that something that you find difficult?

In some parts of my job I’ve signposted other people so I tend to take the view that you have to take your own medicine. And I know that’s what I had to do. Because I didn’t know if I was doing something that was going to put me at risk of this, this happening again.

Did they give you any leaflets about what it was and what it meant, or any other kind of information from the hospital? Or did you hellip;.

The hospital has, yeah. My GP hasn’t. He recommended a couple of websites to have a look at which I have done .

Which ones have you looked at?

The main – they’re basically very, very similar, most of them, even the American websites were covering the same thing. they’re all sort of on a similar vein, you know, so I just went on the National Health Service one. What they do on that is as good as any of them, in fact it’s probably, it explains it better, probably, you know, just in the stroke part of it, you know. And it explains TIAs, it explains mini strokes, and right the way, the whole spectrum of strokes, you know, different types of things, and how it affects people as well. Because no one ever looks at it [laughs] unless something goes wrong [laughs].

And I think you mentioned the Stroke Association as well?

Yes, I’m on this Facebook site on the computer and there’s the Stroke Association on there, like an application off the Facebook. And that’s very good because people are not, all people are doing is talking about their own experiences, and their families are talking about their experiences on there, which I think is quite good because it’s just people talking, not, you’re not getting diagnosed by doctors and things. it’s just people talking about their experiences and different things, how it affected their work, how it’s affecting their lifestyle and things like this, you know.

What do you think you get from individual experiences like that, that you don’t get from the sort of medical information?

it’s a real thing, isn’t it? it’s something real. You know, it’s people talking about it. it’s not text book stuff. it’s just people talking about how it’s affected them, you know.

I used the Stroke Association website. And there was another website I used to use as well where I would talk to other stroke survivors. Not sure what that’s called now.

Do you find that helpful having been able to chat to other people?

At the time I did. Not so much now, no.

What was helpful about it at the time? What made it helpful?

I think at the time everybody that was on the website had recently either just had a stroke not like two or three years later so it was kind of, we was all doing the, feeling the same thing together rather than being at different stages of it.

And so, did it give you a kind of sense that you weren’t alone in that?

Yeah. Yeah.

Do you think that’s quite important?

Yeah.

I mean I’m guessing being at, you know, coming out of hospital and being sort of left to it must be quite isolating in some ways?

Hmm.

Is that, did that feel like that to you?

Yeah. Even, even for people that’s looking after you and carers, even though they’re there and they can see the physical and emotional, you know, impact it’s had on you, I still, they still don’t understand. It doesn’t matter how you try to explain things or try and tell them, they just don’t understand.

We, we’re looking into possibly starting a support group in my, in this area. But I would need help and support from the Stroke Association, whether they decide it’s appropriate or not.

Is that something you’ve started discussing with somebody there, then?

Yeah.

Oh that’s, and is that something that you feel that you would want to get involved in organising?

Yes. I think if I, if, from what happened to me could benefit or help somebody else then, yeah, I would, and I would help.

So it would be almost like trying to put into place something that you would have found helpful that

Yeah.

Hopefully other people might benefit from?

Hm.

So did you get in contact with the local stroke co-ordinator? Was that how you found them?

I, they, well they, I sent to the headquarter, I filled in a contact on the email and they sent me and she phoned me and I think, if I remember rightly, it was within a couple of days she was here to have a chat and see what she could do to help. She also put me in, in contact with the local stroke club. Unfortunately, as far as that’s concerned, I haven’t been able to bring myself to go yet.

it’s, a number of reasons but the main reason is, and it’s rather silly and I laugh at myself when I think about it, but I was frightened of seeing other people there who had had a stroke and were much worse off than I am, or been left much worse off than I am, and then it plays on my mind, Well, is this going to happen again? And am I going to end up like that I do now truly want to go. I would have gone this month, it’s once a month the club, but unfortunately it, it didn’t work out for transport reasons. But I do really intend to try and go next month [chuckles] and I hope that it will help us both because my wife also needs some help because obviously she was there when it happened, it must have been catastrophic for her. And she had no information nobody, well as far as I know anyway, gave her any information. And if we were to get to that club they openly invite partners to go, partners or whatever, you know, carers. And obviously she’s going to hopefully talk to other carers or other people who’ve had strokes and be able to discuss things and, you know, sort of say, Oh yeah, well that’s a good idea, we can, we did that and we can do that Or, you know, This is what we do

Unfortunately the one coordinator is leaving which is sad, but somebody else is taking her place. But, yes, you feel there’s somebody there. We have numbers we can ring. I even have got the voluntary coordinator’s mobile number so we can get in touch. And in fact she’s coming on Friday. We can get in touch fairly quickly. And if all else fails there’s the website to get straight through to the Stroke Association.

I am a great believer in stroke people getting together and, and helping each other and I am a member of the Stroke Association and we do find that we do benefit from these sorts of get togethers. But not only that, I feel that I can contribute to these gatherings.

And so, what kind, what is your involvement with the Stroke Association? How do, what do you do?

RM’ Well we meet about, we meet twice a month. We have a lunch at various places within the area. And I’m now, what I do is I arrange a get, a bingo for instance, I’ve got that and I run bingo and I can still do it with my speech, it’s not that bad. And I’ve also created, and I created quite early on, I, when I came out of hospital way back I went for a short time, a daily, at the hospital in, in [local town] which I, is fantastic. I, it’s, and I built up a game then. I cut out a, personalities in the newspaper, stuck them on cardboard, and I’ve got that. And I, that is, I’ve got that, that to take to the Stroke Association, Association lunch. It would, it would help people talk to each other about the personalities of the photographs.

Oh, that’s interesting. So you’ve got quite involved, it sounds like?

Yes, I like to feel that I’m involved, yes.

And is that something that you’ve found easy right from the start, to get involved in that kind of thing?

Oh yes, yes. Yes, I found, there’s, straight away when I was discharged first for hospital I went to this cottage hospital on a daily basis and, fantastic.

Hmm. So
And I can contribute. Which is makes me feel even better?

Right. Yeah. And do you feel that you’ve made, you know, that you’ve made new friends and new acquaintances through doing that?

Oh definitely, definitely. Yes. The, the, the Stroke Association definitely has great benefits for patients.

And so would you say the main one is getting together with other people and sharing that, those experiences?

I think so, yes.

I mean, it sounds like,
Yes.

I don’t know whether you actually share experiences or whether it’s more activities that you do together. Is it both?

I don’t, you might share experiences but not, not positively. There might, it might be a spin-off. With, like, I think that the general, there’s all sorts of people thrown together. All sorts of people have stroke, strokes. Then there’s the partners who come with the, the people and it is quite a, it is quite a community that we, we have.

I know, and what, what would your message be to other people, because I know that some people I’ve spoken to kind of resist the idea of mixing with other people who’ve had stroke?

don’t, you don’t exist on your own. You must as, seek friends and communication and I would strongly, strongly suggest that you communicate with other, other sufferers, other people, other victims of strokes or what have you. That is, can be, can boost your confidence and you know you’re going down all going down the same road.

So it’s quite reassuring?

Yes.

What happened was, you see, I thought, Well, I’ve been lucky her And so about a year later, a year later? No six months later there was an advertisement in the paper for volunteers at a local stroke support group and I went along as a volunteer. And I spent about four or five years there every Monday or, then it became Wednesday I think, afternoons for two hours just helping, helping, helping out. Making the tea and just being with and talking to and listening to and doing things with and helping along. which I quite enjoyed. It made me realise how lucky I was and made me realise how hard some people have to fight and work to get back their previous, what they were previously capable of. Em, yeah.

Is that something that you were prompted to do by, through your own experience?

Yeah.

Do you think it, I mean, so it sounds like it was quite helpful to be mixing with other people who’ve kind of had similar but maybe worse experiences than you, yourself?

Possibly. Probably, I don’t know if it was helpful or detrimental. I was doing it really, I mean, I found it, I found, selfishly I found it quite interesting and useful from my own point of view but I hope I was doing something worthwhile for other people.

What do you mean by interesting and useful from your point of view?

Well made me, gave me a yardstick as to where, as to where I was on the sort of vascular attack, you know, spectrum.

Yeah.

Like people who have had really bad stroke can’t do anything at all really can they? And they’re wheelchair bound etc, etc, etc.

And how does that, does that play into how you feel about yourself in the future as well, at all?

I think it, what’s happened is that having had the two TIAs has made me quite wary and quite, and very interested in all such things to do with vascular attacks, vascular problems. So I now, I think I know now far more than I ever did ten years ago before it happened about strokes, mini-strokes, TIAs and all the rest.

She recognised because the face, the FAST thing on the television, the advert on the TV and that’s the only way she would have known. And that’s the first thing she said to the paramedic. If she hadn’t seen that advert she wouldn’t have known what was going on, and then it clicked in her mind straight away. So that absolutely, that advert works absolutely perfectly.

And which bit of that was it that rang bells with her?

All of it. It was the, when my face dropped and my speech began, apparently I was starting to make funny noises. And she said that clicked in straight away and that’s why she reacted the way she did. And she was at, one minute slightly torn between leaving me and getting the telephone to get on to the ambulance, but, she’d remembered that advert, and it obviously works and its it does its job. it’s really good.

And I was going to ask you what was going through your mind during that period of time?

My fear was that I was going to be unable to communicate, that I’d lose the ability to be able to talk to my partner. That I’d be unable to work. Losing my arm, not being able to move my limb was a horrific thought.. And it was the lack of communication is the worst thing. Because… that’s a big part of your personality as well, your voice, and, and, your communication skills. And I was, it really did scare me. And the thought of not being able to talk to somebody that you love. It really is quite horrific.

It frightened my partner more than I realised. Because she was fine. It happened on the Saturday, so she was fine on the Saturday, and she was quite cool on the Sunday. But on the Monday night when we were laying in bed, just sort of dropping off she started to cry and it really hit home. And it really frightened her.

So a slightly delayed response then?

Yes. And I think itbecause you run on adrenaline and the heat of the moment that did, it frightened her a lot.

And what were her concerns mainly?

She thought she was, we haven’t been together that long so she thought she was going to lose me. And also if I ceased to communicate parts of who I am disappears. Because of the other things that we do together, if I lose my voice, I lose a great chunk of what we are. So it was quite important to her.

I don’t, yeah, I don’t think enough’s known about it. I mean, obviously you see all the stroke adverts on the television and it’s not quite like that even though it’s a stroke it’s, it’s not as severe as a stroke, if that makes sense.

And I didn’t know there was, such a thing as a mini-stroke or, I just thought a stroke was a stroke. And the fact I guessed that I could function so quickly was, well it can’t have been a stroke then.

So you would associate stroke with some kind of disability?

Yes.

And not think that something that you had is similar to that?

I think people need to be more aware that is such a thing as a minor stroke and a TIA and the symptoms are not as severe. But if you know somebody and they are looking any way not their normal self or, you know, maybe reacting differently, not speaking properly kind of, stuff like that. It should raise alarm bells and maybe you should be thinking, Well maybe I ought to call an ambulance