John - Interview 04

Age at interview: 59

Age at diagnosis: 58

Brief Outline: John was at a conference in 2009 when he briefly lost the ability to speak. He went to his GP next day and was told he had had a TIA. He was immediately referred to hospital.

Background: John is a documentary film-maker, married with one daughter. Ethnic background/nationality' White British.

More about me...

 In October 2009, John was at a conference and went to talk to someone in the coffee break, and suddenly discovered he could not speak. Although his speech returned quite quickly he knew something strange had happened, and he rang to get a GP appointment for the following day. Next morning he noticed some flashing lights for a few seconds in his field of vision while getting dressed, but did not immediately connect that with the loss of speech. He got into his car to drive to the GP surgery, and suddenly realised he could not work out where the car was in space and had to stop for a few minutes ‘to get my brain back into a place where I could drive on’. He has since learnt that you should not drive after a TIA. Eventually he felt well enough to drive on to the GP. 

 

When he arrived the GP told him he had had a TIA, which John had never heard of before. He was told to go immediately to the hospital and not to drive, so his wife drove him there. He was referred to a research clinic specialising in TIA, and had a whole series of investigations, including an ECG and an MRI scan. The research team concluded that high blood pressure was a factor in his case, so he was prescribed medication to lower it, and aspirin. He was sent home, and asked as part of the research to monitor his blood pressure regularly and transmit the results automatically by mobile phone to the hospital. John has found this really reassuring, as a few times he has received a call suggesting he adjust his medication. 

 

In previous medical appointments, including medical checks for his work, John had been told his blood pressure was bordering on high and maybe something would need to be done about it at some stage. The research team has since told him that they recommend treating high blood pressure at a much lower threshold than is normally recommended. With hindsight John wishes someone had intervened earlier and then he might never have had a TIA. The experience has dented his confidence and he found it very frightening at the time. He now feels more confident again, and his risk of having another TIA is now much lower than in the first month after the incident. However, the regular blood pressure monitoring and medication mean he can never quite forget what has happened. He now tries to reduce his own stress levels, but it is hard when you run your own business. His advice to anyone with any strange symptoms affecting their speech or vision, like him, is to seek help immediately. He would like to see more public awareness of the condition and the need to control high blood pressure. John is profoundly grateful that he has had excellent care from a specialist team.

 

John was at a work conference when he suddenly found he was unable to articulate thoughts and he couldn't speak.

 

My incident occurred during a conference. I was attending a one-day conference, a technical conference, and during the morning session thought that I needed to speak to a couple of characters who’d presented papers, so at a coffee break approached one of them. I had a normal conversation, turned to speak to the other character, and lost the ability to speak, which was very confusing and quite perturbing. I literally couldn’t take the thought from my brain to my mouth and articulate what I wanted to say. That lasted for a few minutes. I had to turn away from the man I wanted to speak to, managed to stumble out something to the effect of, “I’ve lost the ability - I’ve lost my words for the day”, and went back to the place in the conference hall, sat and realised that something very strange had happened. It so happened that I was sitting next to a client of mine. So I was aware that I really couldn’t speak to him, because I didn’t want him to know that there was something odd. This would have had a business impact. But I was confident that if it was serious he would – he was a good man - take care of me. At lunchtime I phoned my office and asked my PA if she could get me an appointment with my GP. And early afternoon felt very tired, very hot. So left the conference, came back home. That evening I was disturbed by what had happened, but slept normally.

 

John talked to a consultant to get a second opinion and find out more about the condition and how it could be treated, as well as looking up information on the internet

 

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.

 

John used the internet, spoke to friends in the medical profession, and sought a second opinion about his condition

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.

John's GP asked if he would like to take part in a research programme. He was happy to do so, and feels the research team have given him excellent care and monitoring

 

I feel extraordinarily fortunate that I live where I do, close to a major research group, who’ve been tremendous. They’ve communicated throughout this whole experience from day one what had happened, why it had happened, what was likely to happen, and what they were going to do about it. I was asked, “Would I like to take part in a research programme?” Very happy to do that. And throughout that research programme it’s been them that have told me what was required, explained it, made it happen, facilitated everything. So all I’ve had to do is go along with what they’ve – and that’s been nothing difficult, nothing disturbing, nothing unpleasant at all. And you actually feel you’re doing some good. What’s really reassuring is to know that you’re in the hands of people who not only care about you as a human, but they’re caring about this particular ailment. So that they are at the - as far as I can make out - they are right at the front end of probing what is, what’s happening, what the causes are and how to mitigate. It’s fabulous, delighted to have, that this happened here. What it would be like to be, to have a TIA in a country which doesn’t have our service, I don’t know. Or perhaps to, to have a TIA in the UK but to be a long way from a major hospital. I don’t know. I’m just very glad that it happened where it happened.

 

John delayed seeing his GP because his knowledge of strokes was limited.

 

My, my reaction was not immediate. I waited for a couple of hours before I reacted. And that’s about, that’s due to ignorance. I did not know that the symptoms I was experiencing were connected directly to a minor stroke. It’s only subsequently I learnt that. But I knew that there was something very odd, and I suspected that it was a stroke. But there was a big gap, there was a knowledge gap. Now I’m very well aware that anything odd I’m going to, I will dial 999 or get somebody to take me to hospital, because it’s been explained clearly that there’s, that time is of the essence. And whereas we, most of us, I think know that, “Sharp pains in chest. [snaps fingers] React now”, odd symptoms round brain, no, we’re not, I’m not aware. I was not aware at all of the range of symptoms that one could experience. So that’s been an interesting learning.

 

John describes what it was like having an MRI scan

 

MRIs are a painless process. The only disturbing thing for some people, I suspect, is a fear of claus-, is anything to do with, around claustrophobia, because you are inserted into a tube. I’m pretty broad, and on the second occasion the tube actually was slightly squeezing my shoulders. You’re lying on your back on a wheeled carriage and the carriage is inserted into the tube. You’re, you have earplugs inserted in your ears, and you have earphones on, which allow the operators of the MRI to communicate with you. And you’re told in advance that there will be a series of noises. Those noises are very difficult to describe. They are loud and slightly disorientating. You feel nothing, absolutely nothing. So if you’re not claustrophobic, there is absolutely nothing to worry about. I don’t know what you do if you’re claustrophobic. I don’t know how you get past that. That’s a little mental challenge, to get past that. The first MRI I had lasted, I would suspect, 20 minutes. The second one, the research, was an hour and 20 minutes. And that’s quite a long time to be stuck inside a tube, lying still. But the resolution of the imagery coming out is extraordinary. So you’re, you’re happy that this instrument exists and you’re, you have access to it. So nothing to worry about in that sense.

 

Was the first one just bigger or more open in some way or ?

 

I think it was a modern instrument and it was slightly bigger.

 

I don’t know whether they’re getting bigger. But it was certainly, it seemed larger to me and it was better lit, it was warmer. It was a much cosier environment [laughs]. The second one was a research instrument, deep in the, the bowels of the hospital, and was there for research purposes, not to make patients feel at ease, I suspect.

 

John has started to feel the cold more than he ever did before and assumes it's a side effect from the medication he's taking. It's hard remembering to take five different tablets a day

Have you had side effects with the medication?

 

Small. The strangest thing that’s happened since the incident is that for the first time in my life I’ve felt the cold. I’ve led a life which has taken me to all sorts of parts of the world, and I’ve worked at extreme temperatures, and fine. And throughout this winter, which I appreciate has been cold by British terms, I’ve felt cold. And that’s really very, very strange, that’s quite disturbing. So even inside I’ve got to wear a sweater. And I’m assuming that’s medication. I can’t think of any other reason. There’s, that’s the only change that’s occurred. I sometimes feel that there’s a little bit of indigestion with, with the medication, but no - and slight change in skin. I think the skin has become dryer. But it’s minor, it’s not a problem.

 

No. And the medication. You’ve got a, an anti-hypertensive. What else have you got?

 

I, since the incident I take five different tablets a day. They are aspirin, which is blood, blood-thinning. I think there are a couple of hypertensive drugs. There’s a platelet-reducing drug, and there’s an anti-cholesterol. Yes, so it’s five tablets a day.

 

Quite a cocktail, isn’t it, to remember?

 

It is.

 

How do you remember? Do you have one of those boxes with times of day?

 

Well, I put --[laughs]. To remember to take all the medications, I keep three at the breakfast table, so that I make sure that I take the one that’s supposed to be taken before breakfast as I prepare breakfast. Two with breakfast, that’s pretty simple. So they’re always at the breakfast table. I need to take one during the day, so I carry those in a trouser pocket, which normally helps me to remember. I’m scoring about 95 per cent on that. And then the evening tablet is by my bedside table. So that - reasonably good. But because I travel a lot I need to pack tablets and a huge quantity of pills to wander around with. And that does get difficult, especially on long-haul flights and overnights and all that sort of stuff, where you’re losing track of time. And then there’s confusion of what time of day you’re supposed to take these things. But it’s minor.

 

And a different schedule as well I guess when you’re out filming?

 

Yes, yes. My schedule changes regularly, – sorry, irregularly [laughs]. No two days are the same. So it’s pretty difficult to remember to take all the pills at the right time.

John took part in a research study in which he had his blood pressure monitored and the results were sent on a daily basis down a phone line to the research team

The GP explained that she, her practice was part of a group of practices associated with a research programme at the university, and I would get instant access to hospital, which was tremendous. And after the initial consultation, at the end of the consultation it was explained to me by the consultant I met that there was a research programme taking place, “Would I be happy to take part in it?” And it was, the initial request was, “Would I take my blood pressure three times a day?” and this would be sent in by mobile phone. Very happy to do that.

And it’s been something which has, which has proved extremely useful, because that blood pressure is monitored and I’ve had telephone calls from the hospital suggesting that I change medication, as a result of the observation they see taken from those readings. So delighted with that. And I’ve also been involved in a research project at the university looking at developing new MRI techniques.

 

So very happy with those. And you feel, especially with the monitoring, you feel actually somebody’s there [laughs]. So you don’t have to rely on your own understanding of what’s happening. Somebody’s actually seeing genuine data coming in on a daily basis.

John took part in an extra MRI scan for research purposes, as well as remote blood pressure monitoring. The blood pressure monitoring was easier to understand and has benefited him directly

I was asked, I was asked to take part in a particular research project which was looking at developing techniques, MRI techniques, which reduced the need for injecting radio-opaque fluids. I went along to the hospital and met with the researcher, who explained what they were doing. I think you need, to get more from that conversation I would have needed a lot more knowledge about the brain, MRI technology, and I didn’t want to take up her time. I felt very comfortable that there was a good research project. I was happy to take part in that.

And the procedure itself took far longer than either I had thought or she had thought, because there was some problem with instrumentation. I think they were slightly pressurised then, because their next patient was coming in. It was explained to me that they were interested in seeing my brain, because there was some anomaly had been noticed on a previous MRI and they thought it was an interesting brain to have a look at with their MRI. I feel it’s up to me. If I wanted to find out more, I’m sure I could ring the researcher up and ask for further explanation. But because I don’t know enough about MRI technology I would feel that it could be fairly, it wouldn’t be particularly fruitful, let’s put it that way.

 

The other research, the blood pressure research, is much simpler to understand. The idea of this telemedicine is tremendous, that you can take your blood pressure reading, it will be transmitted immediately, somebody is monitoring that. I don’t know, and I should ask. That’s interesting. I should ask, “Is there a programme set up? Is that, is there some form of automatic monitoring that notices trends or particular anomalies?” And very reassuring to have a telephone call to say, “We have spotted something as a result of this procedure being in place” and that the medication is being fine-tuned. So I really feel that that piece of research is working for me. I understand what’s happening. And I think that should be, the results in terms of the correlation between blood pressure and TIAs or strokes in general, that could be made much more aware, much more publicly available. I knew in a vague sense, in a general sense, you know, I should look after my blood pressure, but I didn’t really understand it’s the prime cause of TIA, so that’s what’s been explained to me.

 

And they’re following you up longer term. Do you know how long they’re going to be?

 

No, I don’t. I’ve had one teleconference with one of the team members just to see how things are going on. And I did ask what’s going to happen, should I continue taking the blood pressure? They said if I was happy to do so, then yes, fine. That’s good news. So I’m happy to do that. And I believe that every three months or so there’ll be some form of follow-up.

John said he was treated as an adult by the research team

 

I was lucky because - I’m lucky in many ways. The fact that the GP was part of a research programme and I live close to a major hospital with an extraordinary research group. I feel fortunate that [laughs] I live in Britain with the NHS, who just do things. You often hear the phrase, yes, you might moan and groan about routine treatment, but when it comes to an emergency, extraordinary. I’m fortunate that I’ve been treated as an adult, a relatively sentient adult, so good conversation, good advice. I feel I know what has happened. Things have been explained to me. I’m very happy to be able to take part in any research work that’s going on.

 

John felt able to talk to his wife and family about how frightened he had felt and says it's important to share things like this

Apart from the effects on myself, the biggest effect has been on my wife and my daughter. And they are just supportive. I think the first 24 hours they were very concerned. Fortunately my wife came to the hospital with me, and at the end of the consultation I made sure that she came in to meet with the consultant so that we both heard the same message about what had happened, the cause of what had happened, and what was going to happen in the future. And because we have a fabulous relationship in which we can talk about anything, I can tell her, I was happy to tell her - not happy, that’s wrong. I was able to tell her in the first 24 hours I was frightened. I don’t mind saying that.

And I’ve worked, I worked seven years underground, so I worked in mines, I know what it’s like to be frightened, and quite, it’s okay to say you’re frightened. It’s all right. And if you can tell your partner, “I’m frightened”, then they understand, to some extent. And they’re there and they, you know, I’m confident that Martine, my wife, will cope with whatever happens, because we talk about it openly. And the same for my daughter. You just say, “This is what’s happened. This is what I feel about it.” And it’s good to share that. And with, with friends.

John says he lost his confidence after being told he'd had a TIA and sometimes now he feels he is less articulate than he used to be, but he has no remaining physical symptoms

 

I think the strongest reaction was loss of confidence. That was a surprise, that all the thoughts and plans for the future were now jeopardised by what had happened. And that loss of confidence I think has continued, albeit diminished, for some months. So that’s something I’m aware of. And I feel less articulate than I would like to be. I find myself searching for words. Physically it’s made very little difference, very little difference. I still have strength, I have mobility. I’m not affected, to my knowledge, in any way in a physical sense. So all the, all the effects have been mental.

 

John feels that the stress of working long hours may have contributed to him having his TIA but it's difficult to cut down on stress when you run your own business

I knew that what I do for a living requires me to work long, long hours, and always has done, which I enjoy. But that’s always been a fear, that that stress would cause something. Lo and behold, it’s caused, it would appear to have caused, or been a contributor to what has happened.

 

I can’t change the stress level I work under. That’s something which is self-imposed. If you run your own business, you, nobody’s told you to do that, you’re doing it, it’s your choice. I don’t have an easy answer to that. And if there’s, for other people in similar situations, I don’t know what I can say. If, unless you’ve run your own business you, it’s impossible to imagine what it’s like. People say, “Why don’t you just pack up and retire?” Well, you for all sorts of reasons can’t do that. So the stress, that stress continues.

 

So the changes are small. It’s something you think about on a daily basis, “What should I be doing?” And it is possible to walk away from some of the more stressful, some of the more stressful parts of the business. And I’m wary not to become overtired. I was told not to become overtired. So in summary, take the medications, measure the blood pressure, try and get fitter, and stay away from excesses of stress.

John feels it's important that his work colleagues know about what has happened to him so that they would know how to help him if he had another episode

I’d certainly tell them, everybody at work, they know what’s happened. And I’ve also spoken to them about what to do if I start to behave strangely, because I want, I want them to be able to feel confident to just dial 999. You know, let’s not delay. Let’s get some help. Because I’m concerned that if I have a stroke I may not be able to explain what’s happening. I want them to recognise the symptoms and deal with it. And because I travel and work in very remote locations because of my business - I’m talking about the middle of Siberian forests, or out in the Sahara, or up on the Canadian ice fields - I need to tell the people I’m with what has happened. I need to be very honest with them and say, “Right, I’ve had this. This is my concern. And this is what I want you to do about it if these things happen.” And that’s something that just feeds into a safety culture which we’ve had as a company, as a group, for all our working time, and which we’ve inherited and learnt from the major oil companies we work with, who are very concerned about individual safety and are extremely good at it.

John had a second TIA whilst he was driving to see the GP about symptoms he'd experienced the previous day. He was told not to drive after his TIA but that it was not a legal obligation to notify DVLA

 

I was aware that the next day I had an appointment with the GP at 9 am. Didn’t think it was serious enough not to drive, so was prepared to drive. Retrospect is pretty good, isn’t it? Whilst dressing that morning I had a strange visual disturbance on the left eye, the left periphery of that vision, a set of flashing chevron multi-coloured lights. Lasted a few, probably ten, fifteen seconds. Very strange. Got into the car, drove away from home. And we live on a very narrow lane and the lane happened to be blocked by a removal truck, so it required me to do a three-point turn through a gateway. And one side of the lane has a drop into a stream. And as I started to reverse I realised I had no understanding of where the car was in space, which was, really was very disturbing, because I drive a lot and I think I’m a relatively confident driver. Managed to reverse using the reversing indicators on the car, pulled out, stopped, and took a few minutes to get my brain back into a place where I could drive on. Drove to the GP, who within minutes said, “You’ve had a TIA.” I had never heard the acronym before. I didn’t know what it was. And she explained it was a mini stroke, that I was not to drive, I was to go immediately to the major hospital in the nearby city.

 

During the first consultation the consultant said, “You will not drive for a month.” And I questioned this. And I was told in no uncertain terms it would be very, very unwise to do so, and because I had been told by a medical professional, it would be illegal to do so. I asked what I should do about DVLA, and I seem to remember it was an optional, it was optional, as was also reporting to an insurance company. So the conversation went round to, “Okay. Let’s review this in a month’s time.” If no other incident has occurred, then the consultant was happy that I would be able to drive again. So I didn’t drive for a month. And on the thirty-first day after the incident I felt very confident about driving, and I have driven since.

John found it very disturbing to lose the ability to speak for a short while as in his job he has to be able to speak at events and conferences

Losing the ability to speak for me was serious. I earn my living by speaking. And the extraordinary event of knowing exactly what I wanted to say and not being able to vocalise was really, really disturbing. The next day the incident of not being able to know where I was in a car, where was I in three-dimensional space, that was very frightening. So, yes, those two things put together. The flashing lights, the visual disturbance, well, that’s odd but, okay, nothing, nothing frightening. But the inability to speak and the, the unawareness of, “Where am I?” was very, very disturbing.

John now knows how important it is to seek medical help as soon as possible, and that you shouldn't drive if you are feeling unwell. He says keep your blood pressure under control, take exercise and lose weight

The other thing I’ve learnt is that if you experience symptoms, don’t delay. Just get on the phone, 999, do something. Don’t delay. And certainly I would never drive again. That was, that was a big wake-up call, not realising how serious things were. So a lot of learnings from that.

 

I do want to tell everybody that the underlying cause in my case, I’m told, is blood pressure. And for the two to three years leading up to this incident in visits to the GP - and I take medicals to work offshore - medics have been saying, “Oh, your blood pressure is at the top end of normal. We ought to be thinking about doing something.” And I’ve never been told, “You are at risk, at real risk. You should take medication now. I’ll prescribe you medication today.” That’s never happened. So the message that I now pass on to people I involve in conversation about this is, “Make sure your blood pressure is way lower than the accepted norm.” Because what I’ve learnt, through the hospital that I’m a patient in, is that their version of normal is far lower than the average GP’s version of normal. And so the prime risk is something that we can measure and do something about. And that’s something that I wish to pass on. That’s my learning from it. Exercise. I could have exercised more. I should exercise more. I should lose weight. So the risks that the blood, the blood pressure problem is something that we can, we can all address.

John feels fortunate to have had this 'wake up call' because it means he has been able to do something about reducing his risks for the future

I may say, this incident was the first time that I was faced with my own mortality. And I know that’s rather a clichéd phrase, but it’s true. I hadn’t - we all think about, okay, there will be an end - but this was an indicator that the end is there. It’s, it’s finite. You only have a particular span on the planet. And it was a tremendous wake-up call. Most of our destiny is in our own hands, and my destiny is in my hands in terms of getting fitter and keeping an eye on blood pressure. [coughs - excuse me]. So my fortune was that my TIA was a minor incident, but a very clear signal. If it had been the reverse, like a major incident, then I wouldn’t have recognised the signal because I would have been struggling. So I’m in this fortunate position of having a tremendous wake-up call, and it’s up to me to do something about it, with the help of all the medical professionals around.. So I’m in this fortunate position of having a tremendous wake-up call, and it’s up to me to do something about it, with the help of all the medical professionals around.

For some while John felt lacking in confidence because of the uncertainties that he faced

 

The immediate aftermath of this incident was that I felt, I lost confidence. I have to speak for my job, for my living. So the, the actual incident itself of losing the ability to speak was frightening in itself. And then the thought you’ve had a stroke, albeit it’s very tiny, it’s still a stroke. And then faced with the thought that there is now a greater risk of a major incident, a major stroke, caused me to lose confidence. It made me consider the sort of things that I do, the remote locations I work in. Simple physical acts, “Should I climb a ladder to do some do-it-yourself?” “Should I be driving?” And of course I couldn’t drive for a month. That was a, actually a very large lifestyle change, if you’re used to just sitting in a car and going. And being completely dependent, living in this tiny village, being completely dependent on cars, not being able to drive for a month was a big impact. And that was, that caused me to think about what would happen if there was a large incident. What faculty would I lose? What abilities would disappear? So part of the wake-up is doing everything you can to avoid that. That, all that combined to a drop in confidence, which I’ve rebuilt, I think I’ve rebuilt most of it. Because I take my blood pressure three times a day and I take five pills a day, I’m reminded constantly something has happened. But confidence comes back in conversation with the professionals and with the medical professionals. It comes back in conversation with friends and acquaintances who’ve had similar things. It comes back because another day’s gone past and nothing has happened. It comes back because the blood pressure readings are consistently low. So it’s returning, I think my confidence has returned almost to normal, but a slight drop.