How does your vision affect you when you’re, say, out and about?

My vision?

Mmm.

Well, it’s not too bad now. Initially, oh, within a couple of weeks I just stopped walking into a really nasty parking sign about this level, well like where you’re standing, about that level. Fortunately I had a friend with me and she pulled me away because it was just going to hit me there and then trees often are a problem but because I’ve got used to it now and a hospital sign was a problem because in one of the big hospitals round here they’ve got these signs sticking out along the corridor but I’ve got used to, if I’m anywhere where trees are now, I know I can’t see properly out of my left eye and so I tend to get hold of them with my right hand and then sort of take myself round a bit.

So, oh course, I can’t drive anymore. I’m not allowed to drive and if I’m reading, and this has been a special problem when I’m singing, I can’t see the first letter sometimes or the first word and so I sing the wrong bit [laughter] and also when you’re, when you’re, when I’m trying to sing a part, I can’t I can’t find pages well enough, so I’ve just given up singing with that choir. I just sing in the church choir and I just sing the, the main parts, I don’t do a descant or anything. It’s not affected my reading I don’t think. Oh well, only things like reading for music because normally when you’re reading a book or a paper with something written all over it, you I suppose, I don’t know, you just adjust to it. Well, maybe I have adjusted to it. It’s difficult when I’m trying to find things because I’ve also lost some of my central vision and so that’s difficult and we haven’t got things filed very well [laughter] in this house, which drives me mad. I used to work in a hospital and in a psychology department and it was very badly filed when I went there and I made it all absolutely beautiful and I want to do that at home but weve got a filing cabinet but weve just discovered it’s got no key [laughter] So were going to have to try and get one, so I hope that will help. Of course, I do knock things off sometimes. Yes. I do knock things off and they do tend to be liquids but I don’t seem to do that as much as I used to so then I suppose I’ve got used to it and of course I get used to not putting things in the kind of place where I know I might be likely to knock it off.

With the Hemianopia do you think she ever doesn’t, you know maybe, clean part of her hair or’

Sometimes yes, uh huh. Some-, oh yes sometimes, uh huh.

Can you talk about that?

Yes sometimes, [the carer], oh, the carer she gets in the morning, she makes sure shes looking really nice, she brushes her hair and everything. But then if shes, through the day it can be a bit of a mess, maybe if shes had a wee lie down or of she falls asleep, or what have you, and she does kind of, miss things at the right hand side and this is also a problem, she can knock on, she can knock her head on a door if shes entering a door. In fact, she really worries me at times. Shes always standing behind you so when you turn to go back shes sort of backing away from you and shes got a unit in the living room and I’m always waiting for her to bump her head, shes always getting a bump on this side, this side, this bit here, shes always bumping, and again that is because that’s obviously due to the, you know, the shadowy part of the right hand side of her eyes. And shes had quite a number of really bad ones, really sore ones, you know.

Can you describe to me what, what’s the problem then?

Well, the, the right side was affected and although I can see, but I also see shadows as well with this eye, you know, which is a nuisance but I suppose that’s just par for the course really.

How does it affect sort of watching the television or ‘

No, I’m, I’m fine because with one eye, I mean, you’re, you’ve got perfect vision and with the other eye you’ve partial vision with that eye, so I can look at the television. Sometimes if theres something on the programme and you’re supposed to look at the right side and you’ve to turn your head to look at it because you can’t use your eye to, to look at it. That’s the only thing but that’s not difficult.

So you mentioned then that that people often don’t understand that you’re, that you can’t, that your vision’s not quite right?

I think, it’s, it’s hard for people to comprehend that, the way, I would never have known how we see, that you sort of see 360 degrees with each eye to, to see and this eyes only got half my sight in each eye and when you say, say to people you’re partially sighted, they say, ‘Your eyes look fine, you know, so my, my eyes are fine, it’s my, it’s my brain, it’s sort of further back than that that’s affected so it’s really hard to describe to people how I can see. What, what actually one of the doctors did where I worked once was get an old pair of sunglasses and put some elastoplast on, taped up half of each lens to blank out what I can’t see and let some of the girls that I worked with try it on to sort of show them what I’m missing, if you like, let them walk about and most of them said, ‘Oh God,’ you know, the no idea, that’s what it’s like.

Initially I was very, very neglectful of my left side. If I for instance was sitting here and somebody would sit next to me on that settee and they would ask me a question, I would address my answer to you and to pass the camera to you, and they would start to get extremely jumpy about all this and wonder why I was cutting them dead.

Of course I wasn’t I was just, I was just unable to cope with my left side. I’ve done hundreds and hundreds of tests on paper since that time to try and improve my left neglect as it’s called. What they do is they give you a whole load of designs on a piece of paper and you have to cross the ones which are maybe zeros or threes or twos or fours or whatever and of course. What you tend to do is cross out those examples on the right hand side of the page and when you get the hang of it you start to cross out the left hand side as well because in the beginning you look terribly proud of yourself for having found all these twos, threes and fours on the right hand side and the person doing the test looks at you with a sort of rather sympathetic gaze and says ‘well what about the ones on the left hand side.

Well after a while you do get used to this test and you really start correcting it and you come to realise that what’s on my left side there is this, this and this but I, I’m still not too good at it, I have corrected it up to a point. I had to really work at it very hard, and I suppose that’s one of the reasons why the DVLC say’s ‘well you’ve had a stroke, I don’t know whether you should drive. How are you in the side mirror, how are you in the driving mirror indeed. Do you see things through 360 degrees and how long will it be until you do.

So do you know which of the main areas of the brain that have been affected by the stroke?

HusbandWell, they identified some bits of the brain basically attached to do with’ well, they said originally some words about sight and I can’t remember what the other things were but the problem I have with my sight is that although both eyes work the brain basically doesn’t know what to do with the two signals from the eyes, so I tend to see double now and basically I can use either eye so each month I change around and use one eye .

So you wear the patch, patch?

WifeYes.

HusbandWell, if I take this out, I can see normally but I see two of everything [laughter].

WifeThey did do some tests to see if you could have prismatic lenses which can correct double vision but because the eye ball movement is not co-ordinating properly, apparently they, they can’t give you prismatic lenses unless you’re eye balls are moving in co-ordination, so’

HusbandAnd also I think that if you move to one side, they need different correction for the middle, so there, they can’t use prisms. They can only use prisms if you need the same correction in both eyes and in the middle.

You were talking about your vision and, you know, maybe not having as wide a visual field and how, how does that make you feel with the, with the children?

Well, that’s quite, it’s quite dangerous actually like I need to, I know how dangerous it is. Like, I need to be careful when I’m crossing the road out there with them, it’s not just me that could get killed crossing the road, it’s them as well. So I know to take my time and really, really watch what I’m doing. Also things like when I’m carrying the baby, I need to watch that I don’t miscalculate if I’m walking through a door because if I’m carrying him and hes on my hip, he could get bashed on the door frame so I’ve been not too bad with that and because I’ve been over-compensating, it’s usually just me that gets [laughter] gets hurt but, like, hes been fine but the eyesight again on stairs, especially now , I need to’ I can walk up and down the stairs myself, I feel quite dizzy but really hold on’ but sometimes with the baby, I’ve got to get him to bump down because hes no very good on his feet. So if hes no good on his feet, I’m no good on my feet because of the eyesight, it’s really, really tricky. So I get him to bump down and I go behind him and it’s easier. So I think there is ways to compensate it when the kids are concerned just to kind of look out for things. So it’s not been too bad in that respect. I have found ways round it as well.

So what sort of things? Could you look at an object and name it or?

Yes. I didn’t have a problem, like I knew, I knew a television was a television. I knew things like that. I just couldn’t find my way around places. I couldn’t I couldn’t recognise anything. Like when, for instance, for example if I was to say to you the toilet’s the first on the right, I’d go, first on the right, I’d go, where, wheres my right? And then I’d say, is it first or second on the right? I’d forget the actual command as well. I couldn’t picture it because it was my visual memory. I didn’t recognise anything about, if I went out my ward to the toilet, somebody had to take me [laughter] because I couldn’t find my way back and I was panicking because obviously it’s a panicky thing, if you’re lost, if you’ve never, you know, I had a great sense of direction beforehand, that I could drive anywhere I wanted whenever I wanted, you know, it didn’t phase me at all, I would just go and do it. Whereas now, I can’t even get to the toilet by myself and get back. This was in the ward. So I got every test under the sun.

You said that they didn’t do very high tech tests. Did you have another test when you came out of hospital?

Yeah. I got another test, it was about four months later, four or five months later because they wanted to wait until the brain had settled down, so that it was a more honest result but the hospital were really good and the doctor that took me for like the eye tests and that, she explained a lot about, because I thought, I thought I was going a bit mad because I felt’ I didn’t know if my eyesight was really bad or if it was, you know, I know it wasn’t bad because I could see but it was so different. It felt bad because it’s so different to what it was and I started to imagine that that was actually the case because I thought, I can see and surely if you can see, then you’ve got good eyesight. I can see anything I want to look at, so I’ve got good eyesight but it feels different and it wasn’t till I went back to the hospital that that consultant had explained it. Where the stroke had affected me, she actually described to me symptoms and it was spot on to how I was feeling and then I started speaking to her and there was different things as well because as this point, maybe five months, five months after the stroke, she had said about the colours, she said about depth, shed said about feeling of dizziness and things like that and visual memory was also comes into the eyesight because eyes and visual and I was having an awful problem finding things.

OK?

After I’d came out of hospital, while I was in hospital, I didn’t know where things were in my house. When I came out of hospital, I still didn’t know where things were, where they were kept in the house, I didn’t know where things were, I couldn’t put things away, everything was a big effort. But’ when’ when I got a bit better and I started to remember where things were, because it was my own house and I was doing it all the time, eventually the brain says, ‘This is where this is kept. But like I was often losing things that were right in front of me and the consultant at the hospital said that’s part of that part of the brain that’s been affected. Things can be in front of me. I’ve done it myself before the stroke, you can’t find something and it’s been right in front of you all the time. But now I do it all the time and it is quite frustrating because you can look for something for ages and then all of a sudden you find it and then’ the other thing as well is sometimes I can be looking for something in a supermarket looking for a tin of beans, I can’t find that tin of beans because I can’t actually, it can be right in front of me butI can‚Äôt find it because it‚Äôs right in front of me but I can‚Äôt actually, my brain can‚Äôt actually pick it out because it‚Äôs the visual part of my memory that‚Äôs gone.