Dennis -Interview 01

Age at interview: 83

Age at diagnosis: 82

Brief Outline:

Dennis first became aware of immobility in his right arm in 2008. The second time it happened he went to the GP and was told he'd had a TIA. He takes medication and has been fine ever since. He is taking part in a TIA research study.

Background:

Dennis is married with three children and five grandchildren. He is a retired music educationist and a practicing composer. Ethnic background' White English.

More about me...

Dennis first noticed something was wrong in 2008. After a busy day gardening, he sat down to relax by listening to some music with a glass of whisky. He found he could not move his arm to reach the CD case, and then that he could not stand up. After a few minutes he was fine, and he thought it was ‘just one of those things’, or perhaps from drinking the whisky, which he does not normally drink regularly. Four days later it happened again – he was watching TV with his wife and could not move his hand to get the TV remote control. He tried to say something but his words were slurred. She did not hear him because of the TV. Again it passed quickly, but the next morning he told her what had happened and phoned the GP for an appointment.

He was seen that morning, and the GP immediately said it was a TIA and referred him that afternoon to a specialist research clinic at the hospital. He found the word ‘transient’ reassuring, as it suggested he had a temporary problem. Dennis has been fine ever since. He takes aspirin, an anti-platelet, an ACE inhibitor and a statin. The only problem was that one statin (simvastatin) upset his stomach, but he was changed to atorvastatin and has had no side effects since.
Looking back, Dennis thinks he probably had previous symptoms which at the time he did not think were serious. He sometimes felt dizzy when gardening, and occasionally had blurred vision for a few seconds. He mentioned the vision problems to his optician, who said it was probably to do with the eye muscles. He advises anyone who thinks there may be something wrong to get it checked out, and not just to assume it’s a passing thing. Another piece of advice is not to give up your driving license, even if you have to stop driving for a while. He was advised by his GP when he first saw him not to drive and so he immediately told the DVLA (Driver and Vehicle Licensing Authority). They took his license away and it took him 7 or 8 months of ‘badgering’ to get it back, even though the hospital told him he was fit to drive only a month after his diagnosis.

The research study is looking at ways of reducing the chances of having a stroke, using preventive medication and identifying risk factors that may help doctors predict which people are more likely to have another stroke. Dennis has had various follow-up appointments and will stay in the study for 5 years. Tests have included having an MRI scan of the brain, a 24-hour heart monitoring test, and a period of regular blood pressure monitoring using a Blackberry device which automatically sends the results electronically to the hospital. Dennis feels all these aspects of the study have been easy to do and staff have been very helpful in advising him over any queries. Dennis’s wife also joined the control group for the study. He hopes taking part, as well as providing him with excellent care, may help others who have a worse outcome than he has.
 

Dennis had two episodes within a few days of each other, each time the symptoms were similar.

I had had a busy Sunday in the garden, and at the end of the afternoon, feeling very self-righteous, I went and poured myself a whisky, and sat down to listen to a very noisy piece of music, quite relaxed, and at one point I wanted to move the CD case, only to find that my arm wouldn’t move. I thought, “What’s going on?” So I thought the first thing to do would be to turn off the hi-fi, and stood up, or rather tried to stand up, and found that I couldn’t. So I eased myself down onto the floor, crawled across the floor, turned off the radio with my left arm, which was fine, and just lay there for a minute or so, and then all was well.

I stood up, went back, and my wife was in the kitchen at the time, so I thought, “Well, I don’t want to trouble her. All’s well again. I feel fine. One of those things.” And a few days passed. I felt perfectly fine, because I normally enjoy good health and continue to do so. And then on the Thursday evening we were both sitting on the settee watching television, and this was rather later in the evening, perhaps about ten o’clock. I made a comment about something that was happening on the TV, and my voice came out rather slurred and once again I found that my right arm was immobile.

Dennis felt that in retrospect he had experienced symptoms before that may have been an indication that something was wrong.

In retrospect I realise that I might have had some indication of something that needed attention before. Occasionally, very occasionally, when I’ve been perhaps in the garden, I’d been busy and just stood up for a moment, and the world seemed to go round briefly, and took a few deep breaths and all was right again. And another feature was that occasionally I would experience double vision. I might be watching television and the picture would go woozy, and after ten seconds, normal vision would resume. Since I’ve been on the medication nothing like that has recurred. So I think it’s probably safe to assume that they were indications that something might be amiss.

Dennis had a short episode where he lost movement in his limbs, but as it passed quickly he didn't mention it to his wife.

I had had a busy Sunday in the garden, and at the end of the afternoon, feeling very self-righteous, I went and poured myself a whisky, and sat down to listen to a very noisy piece of music, quite relaxed, and at one point I wanted to move the CD case, only to find that my arm wouldn’t move. I thought, “What’s going on?” So I thought the first thing to do would be to turn off the hi-fi, and stood up, or rather tried to stand up, and found that I couldn’t. So I eased myself down onto the floor, crawled across the floor, turned off the radio with my left arm, which was fine, and just lay there for a minute or so, and then all was well.

I stood up, went back, and my wife was in the kitchen at the time, so I thought, “Well, I don’t want to trouble her. All’s well again. I feel fine. 

While they seemed dramatic at the time Dennis's symptoms disappeared so quickly he didn't even bother to tell his wife about them.

Although that seemed dramatic at the time, because it was just a new sensation. I’ve always been very active, energetic, and still am, mercifully. Suddenly to be immobilised in that way was a very odd experience. Mm.

Okay. So I mean that, that’s interesting that perhaps you did find it quite dramatic, but you still didn’t make, put two and two together and go?

 

It didn’t worry me, and the fact that I didn’t tell my wife sort of suggested that not only did I not want to worry her, I didn’t, it didn’t worry me all that much.

 

I thought, “Well, if I’ve bounced back that quickly it couldn’t be too bad.”

Dennis had a bad reaction to simvastatin and eventually the doctor was able to prescribe an alternative medication.

The medication, you said the simvastatins you’d had some side effects with that. What, how did it affect you?

Oh, it affected my digestive system. Yes, I had quite bad diarrhoea. And this was happening, well, the medication was prescribed at the end of October, and towards Christmas, in December, things were starting to happen uncomfortably, and so Christmas was pretty miserable, [laughs] complicated by the fact that we had visitors at New Year who brought the Norovirus with them, so I got that on top. It was a double whammy [laughs].

 

Not nice.

 

So, no, I went back to my doctor and told him what had happened, and so - well, of course we didn’t know then that it was the simvastatins that was the problem. I had to cut them all out to eliminate the possibilities one by one. But that was the first one he eliminated. And once that was done, things quietened down. And so I was then prescribed atorvastatins.

 

And you’ll take that indefinitely, or is it time-limited?

 

I assume so. I assume I will have to take all these forever, because I haven’t been told to knock any of them off.

 

What else are you taking?

 

Aspirin. Coversyl, persantin, twice a day. And atorvastatins.

 

And no problems with any of the others? They haven’t-?

 

No.

 

No?

 

No. No.

Dennis monitored his blood pressure regularly at home and the results were sent to the research team via mobile phone. He also had a 24-hour heart monitor at home.

Yes, and of course for a period, was it a three monthly period? I kept daily recordings of my blood pressure, three times a day, using the Blackberry system.

 

Ah, okay.

 

Automatic system. I maintained my weekly blood pressure manually. I’ve still got the machine. And periodic visits from the nurse.

 

They come out here do they or?

 

Yes.

 

Oh, okay.

 

Yes, yes, yes. Last week in fact, as it was the year, the year’s interval, she came and fitted the twenty-four hour monitor.

 

Tell me a bit more about these things, because these are quite interesting. Let’s talk about the Blackberry blood pressure thing. What, tell, describe what happens with that.

 

Well, it’s a normal blood pressure machine connected to the Blackberry device, which you simply plug into the mains, press the button and the reading is automatically transmitted straight to the clinic.

 

So you don’t have to press any buttons on the Blackberry or anything?

 

No, no. It’s all set up.

 

That’s good.

 

Very easy. And that for three times a day for, I think it was over three months. I forget now.

 

Did you ever forget [laughs]?

 

No, no, no I didn’t, and I don’t really forget my weekly monitoring, unless something out of the routine happens, like if we go away for a couple of days. And the same with taking my medication. I keep a regular pattern.

 

Yeah, and what was the other thing you said? There was the Blackberry and then, oh, the twenty-hour monitor. What what’s involved in that?

 

Very little. Just strapped around and fitted to the waist, and you carry on life as normal, and then you sleep with it. You hear the machine going off every half hour. And then twenty-four hours later it’s removed.

Dennis found it difficult to deal with DVLA and it took him a long time to get his licence back after surrendering it.

Of course, I was told not to drive, understandably, by my doctor. And in fact I made the mistake of putting my hands up to the DVLA, who immediately requested my license back. So I would recommend that yes, you stop driving, but you hold onto your license because it takes a very long time to get it back [laughs].

Have you managed to get it back now?

 

Oh, I have, yes, yes.

 

So you haven’t had to make any lifestyle changes, really, apart from the driving, which - how did you how did you manage to persuade the DVLA to give you back your license? Did you have to get a letter from the clinic or something or?

 

Yes, well, they give you forms to fill in, and I initially made the mistake of downloading forms from the, from the website, and mistakenly filled in the forms appropriate to heavy vehicle driving - an easy mistake to make, because it wasn’t terribly highlighted on the first page - and that involved getting a complete medical examination, at some expense, from your GP, which I did. So I provided them with far more information, accidentally, than they needed. Despite that I found them very difficult to deal with. I don’t think, I don’t think it was anything to do with suspicions about the medical situation. I think it’s just the way the DVLA work. In fact, they were highlighted on a Watchdog programme, I believe, on one occasion for inefficiency and incompetence. So I’m inclined to put it down to that. So I just had to keep badgering. In the end, I had to adopt a fairly strong tone with them and demanded to speak to a supervisor, and eventually was put through to one who said, “Oh, it so happens that your okay has come through today.” [Laughs].

 

 [laughs] How fortuitous.

 

How fortunate. And that was it. But that was something like- oh, seven or eight months later. And the doctor in the team at Oxford who told me after a month that I was okay to resume driving.

 

So you had a long time. I mean that’s--.

 

I had a long time without my license. So, as I say, it’s better not to surrender the license until absolutely necessary.

Dennis would be interested to know how the research progresses but it is not that important to him. He is impressed how the research nurses have fitted their visits round his needs.

No, I can only pay the highest of compliments, really. No, I’ve been very professionally dealt with. What more can one ask? [laughs].

 

And in terms of the research, do you, how long will you continue in the research programme?

 

Well, I think one signs up for five years. Not - because we’re likely to be moving and don’t know to where, that may not survive five years. It just depends. Although personally I’d be quite happy to keep in touch with it if that’s helpful, but I realise that if I go outside the boundaries that might not be possible for them.

 

And do they keep you in touch with how the research is going? Do you get any up-dates [study name], or would you like to?

 

Not especially. I don’t know how that would help them, because obviously it involves more work. I suppose, ultimately, it would be interesting to see what conclusions can be drawn, therefore what advice can be given. Probably more help to the medical profession.

 

Okay. Is there anything you’d want to say to other people about taking part in research, from your experiences?

 

Only that I could recommend it, if it’s convenient, physically convenient, for them to manage. Obviously, it involves some travelling from time to time, so it depends where you live, and your means of getting to and from. But they have been very helpful in coming to me occasionally. I mean, the twenty-four hour monitor would have been fitted on my first annual visit, but because I wasn’t able to go back next morning - we were actually going away - they decided to postpone that and make a separate event of it, and came here, on two days. So that’s been very helpful, and I’m sure they would be to anybody who found difficulty in travelling.

Dennis's advice is to see the GP even if you think your symptoms are trivial.

Well, with hindsight, because one - and I wouldn’t be alone, who doesn’t really like to bother doctors unless absolutely necessary - if you have something out of the ordinary it’s clearly advisable to do just that. You think at the time that it’s a passing thing, which is going to be hard to pin down, and, as I mentioned, I mentioned the eye problem to my optician who hadn’t suggested that it was anything of that nature to worry about. But there’s also the possibility that it might be, so it obviously could be helpful. But clearly, once I told my GP of the nature of the problem that I’d had he knew immediately what the problem was, and put things into action, so the advice obviously is see your doctor.