Anne - Interview 03

Age at interview: 79

Age at diagnosis: 72

Brief Outline: Anne first had a TIA in 2003, a second in 2008, while driving, and a third in 2009, after which she was referred to hospital. She may have had another one a few days before the interview, and is waiting to hear soon at a planned hospital appointment.

Background: Anne is a retired assistant college secretary. She is widowed and has 3 grown-up children. Ethnic background' White British.

More about me...

Anne’s first TIA was in 2003. She was out in the garden, supervising some gardening, when she suddenly felt odd. She describes it as ‘a curious feeling of knowing where I was but yet not knowing’, and feeling ‘disconnected’ or ‘woozy’. She went in to sit down and realised she couldn’t remember what year it was, so she checked her desk diary. It was as if one part of her brain was working but another wasn’t. Her daughter was concerned and got her a doctor’s appointment. She recalls the doctor mentioning it might be a TIA and recommending she take aspirin, but it seems TIA was not recorded in her notes and no further action was taken.

Anne’s next experience was several years later in 2008, while out driving to see a friend. Again, she felt very strange, rather than experiencing any particular weakness or visual problems. She wondered whether to stop driving but decided to carry on, and it went away very quickly. She has since discovered that it is recommended to stop driving for a month after a TIA. She did not go to the doctor immediately. When she did, sometime later, she felt the way she mentioned it probably down-played its significance, and she talked more about her bad back than the TIA.

Then in 2009, she had another episode, feeling very faint during a wedding reception at the weekend. This time when she telephoned the GP on the Monday or Tuesday, she was recommended to see the duty doctor that day and was referred to hospital to a specialist research clinic. She has been very impressed with the care and thorough investigations, including an MRI scan and a remote blood pressure monitor which sent her results by mobile phone to the hospital. She was prescribed aspirin, ramipril (an ACE inhibitor) and a diuretic, and told not to drive for a month. She also discovered she had a leaky heart valve. The heart problem is more trying than the TIAs in some ways, as it leaves her feeling tired and lacking in energy. However, the TIAs also leave their mark, and each time she feels under a cloud for 4 or 5 days.

In the week before the interview, Anne felt very strange again, and had some vision problems with her right eye not focusing. It was as if ‘I hadn’t cleaned my glasses’. She has been quite scared this time and spent one night lying awake thinking that if she went to sleep she might not wake up again. This has not been confirmed yet as a TIA – she was due to go for another appointment to the research clinic shortly to discuss it. Anne advises anyone with symptoms that might be a TIA to seek medical help at once, and thinks more needs to be done to raise public awareness.
 

Ann recently experienced symptoms similar to those of her previous TIA's and she felt worried...

 

More recently, in fact only about a week ago, I was working at home and I felt extremely odd, and was really quite worried about what was happening. And for the following week I went through some sort of period of being really quite scared, one sleepless night, and I thought I’d better stay awake because I might just die in my sleep, which was probably being stupidly dramatic.

Anyway I then went back to see the doctor and, cut?

 

And he immediately sent an e-mail, or anyway got in touch with the hospital, and then I was given an appointment which I have to look forward to this coming Monday.

 

Ann says it's important to ask questions and find out what you need to know

 

I sort of feel I’ve been so well treated, but perhaps the sort of ignorance about TIAs should be, [pause] – well, people should know more about what it stands for, what it is, what may happen. And I imagine different people’s experiences can be totally different, can they? So there’s such a wide spectrum of feelings and it must be quite a difficult thing to tackle. But certainly I feel there’s been tremendous support all along the line, and that if there are any mistakes it’s because I haven’t - I mean mistakes about communications - it’s because as a patient I haven’t asked the questions, not feeling that I needed to. So perhaps it’s, the ball may be in the patient’s court, but a little prodding in the right direction [laughter] might be good.

 

Ann felt 'woozy' and 'disjointed' and had trouble focusing with her right eye

 

This one that I had when I was in the house, the recent one, it was, I put in my diary a feeling of wooziness, which I don’t think probably describes things very well. Disjointed, not really, not functioning at all, but it didn’t last very long. I mean it was probably a matter of minutes. Does that answer the question?

 

Did you feel any of the numbness or vision problems or just…?

 

You’ve reminded me that certainly before that one I thought that either I hadn’t cleaned my glasses properly, because the right eye didn’t seem to be focusing, and I don’t think it was my glasses, I think the right eye was not focusing. And it’s alright again now.

 

Anne had never been a research participant before. She felt lucky to be asked, and hoped it would...

 

What about the information you were given about the research project and how you were, how consent was taken? Did you feel that was well handled?

 

Yes I certainly did. No, it seemed to have been done in a most thoughtful way and understanding way. And I’ve only got a sort of gratitude to the whole system for how well it was run and how thorough it was, and the sort of, the dedication of the people who were running it.

 

Have you ever been in any research projects before?

 

No, I don’t think I have, [laughter] no.

 

No? First time?

 

First time, yes [laughter].

 

And when they, when they asked you if you wanted to be part of the research, what went through your head? What were you thinking?

 

Well, I thought this is an opportunity which one’s jolly lucky to be given, and it wouldn’t only be helping me, but I just hoped it would spread usefully for a great number of people.

 

Anne encourages others to think positively about it if an opportunity to take part in research is...

 

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

 

I think probably there is, that if you are given this offer, do accept it, [laughs] because I think it - apart from all the help and the support - I think it sort of opens doors that you probably wouldn’t have ever come up to in the ordinary course of things, but to be able to take part in some research thing I think is really a great privilege and a tremendous help.

 

Anne was impressed at how thoroughly she was investigated by staff at the research clinic. She...

 

Yes, I’ve got various sheets of paper with all the different things that were done but the most impressive thing, I think, was the very beginning when I had a very thorough interview with one of the doctors, who then explained what needed to be done, and on that same day there were blood tests and then there were heart monitoring and various other tests, and I felt that one couldn’t have had a more thorough and helpful MOT, and I was very impressed. And then there were interviews later on, following up. And this, the blood pressure regular taking for about a month, and I now have one rather more old-fashioned one, which I do three times at a certain time on Sunday, and I think that’s to go on for a bit.

 

Is that also transmitted by phone line?

 

No, no, that’s a sort of steam one.

 

Ah [laughter].

 

So [laughter] you scribble down on a form.

 

Okay, right. And did you have an MRI scan?

 

Yes.

 

What was that like?

 

The MRI scan is when you’re put in a sort of thing which you think is going to take off and go into space - is that right or is that not right?

 

It’s the tunnel thing?

 

A tunnel thing, yes, that was all right. It was such a relief not to be completely enveloped, which previous MRI scans which I’ve had for my back I didn’t like at all, and got very claustrophobic. Until the last one where it was open, which is a huge advance for thems with claustrophobia.

 

And what about the noise? Because people sometimes don’t like the noise levels in an MRI?

 

No, I think they’ve improved it, haven’t they? I don’t think it’s as noisy as it used to be.

 

Did you have headphones on?

 

Do you know, I really can’t remember. I just remember sort of lying down on this thing which luckily you weren’t covered up, it was much more open than I expected, so that was good.

 

Ann said at first she just needed to listen to the doctor and wasn't up to asking too many questions

 

Feel there’s been tremendous support all along the line, and that if there are any mistakes it’s because I haven’t - I mean mistakes about communications - it’s because as a patient I haven’t asked the questions, not feeling that I needed to. So perhaps it’s, the ball may be in the patient’s court, but a little prodding in the right direction [laughter] might be good.

 

So you’re thinking about not actually saying much to the doctor until the end of the appointment, that time you were talking about? Or when you say you didn’t ask the right question, what kind of thing were you thinking of?

 

Oh I see. I think probably the first time it was all so new, it was all such a surprise, so one really just wanted to listen, having reported what had happened. And this curious thing about being able to cope with the practical side of things of, “Well, if I don’t know what time of year we are or whereabouts we are, just go and look at the diary.” So there was a bit of brain that seemed to be functioning rather well, [laughter] but it certainly was a very strange sensation of being lost in time somehow.

 

Ann had a TIA while driving to see a friend and wondered "Do I go home, do I go on? What?"

 

I was driving to meet a friend, and I suddenly felt very peculiar and I said to myself “Do I stop? Do I go home? Do I go on? What?” and decided just to go on very slowly, and sure enough in a mile or two it was all over and done with, but I felt the most extraordinary sensation, “If this is dying, it’s not really all that bad.”

 

It was very odd, the sort of the machinations of the mind, thinking, you know, what to do and then deciding, “Well, you know, I mean it’s a little hiccup but let’s go on”, and in fact it worked out all right, but it was lucky that it did. So it shows what sort of period of time it lasted.