How about looking up information? Have you looked up information about stroke at all?

Know thy enemy is the way I put it, yes I’ve looked up quite a lot of information about stroke, what caused it, what methods that they’ve got nowadays of easing the disabilities and so on. For example, theres a new device out now which is, it goes onto the hand and gives electronic messages to the brain from the fingers. So it will enable, enable the, the hand to actually grip even there is no conscious way of making it grip. Ahg I’m, I’m not putting this very well but I think you know what I mean by electronically making the, making the hand grip.

A stimulator?

Stimulates. Yes. It stimulates the nerve endings.

That’s interesting and I mean, how have you found the information that you’ve come across?

Very useful. Very useful. Again, know, know thy enemy. Out of a matter of interest really when I was in, when I was in, I was in hospital, I read extensively about stroke because I was fighting it. Now, it’s just a matter of interest now.

How about looking up any information? Have you looked up information about stroke?

Yeah, I’ve done that. I’ve got a lot of information from the hospital and off my occupational therapist and I’ve looked it up on the Internet as well. So I’ve looked up a lot of information about it and I think it, it, it brings home that not every stroke is the same. I only thought there was one stroke and that was it but obviously theres different types and how they can affect you and everybody can be affected differently and that. So I’ve learned a lot. Yeah.

Anything that sort of surprised you about the information that you read on the Internet?

Well, to be honest with you, it was more my husband that read a lot, but a lot of the information on the Internet was information that I already knew or, or I already had because we had a lot of information packs on it anyway. It was all’ telling us like the cause of ones and that and, well, we really knew the causes by then. We didn’t at first before, like, I had a stroke, I didn’t know what caused it or if anything caused it but we knew the factors and who, who was at risk but we had had a lot of information off the hospital. So it, it was really just the same information.

WifeAt, at the point when you come out of hospital out of rehab, you need a lot of information for the patient and for the carer and it would be, it would be overwhelming to have it all at once but then you need it all at once because it, it you need to know it’s there even if you don’t access it straight away. It would have been nice to know that there were things for carers going on, although it took me a while before I was able to leave him on his own and go to things’ But we did have help from the, the social workers in the rehab unit organised the claim for disability living allowance and incapacity benefit and blue badge and told us about anything we wanted to know on that score, so that was good So that we got everything that we were entitled to, without means testing [laughter].

Have you looked up any information about stroke at all?

WifeWeve had all the weve had various leaflets from the Stroke Association about cognitive changes and I had some background knowledge of stroke because my sister had a stroke in her early 30s and I knew that one of the things which people don’t usually recognise is the emotional changes, so I was prepared for that… But we got yes, leaflets from the Stroke Association I think the main source of information and also I think staff at the rehab unit were, were quite useful at the psychologist they had particularly was quite good at explaining how the different parts of the brain were affected and I know I’ve probably forgotten it all now but it was, it was quite good to have somebody to explain it then and, as I say, to have literature that’s available. I don’t think weve used websites much, have we, because we read things at the time really’ But I think if, if you’re not aware that stroke can cause the sort of mental and emotional damage, it can be a bit of a shock that there are, there are changes in [my husbands] thinking which is very hard to put a finger on but it, they, they’re different. It’s not quite what it was before.

Well, I’ve got my own computer in work, so I do go on the Internet sometimes and look up things. So generally I think it’s out there if you know where to look and your a bit persistent and you just keep looking so you can get some I think if you want to actually speak to somebody face to face and questions, it’s the difficult bit. Theres not many opportunities, certainly not, not locally. I can do that but Motability, the only information I’ve had is just off the Internet and all they say is just go to a garage and ask them because sometimes they have someone who specialise in Motability schemes and they work for their garage. So I’ll probably be able to do that next but apart from that it’s just information off the web about the sorts of cars, different types of vehicles that can be adapted for wheelchair access.

No. I know my wife did and some friends did when I first had it. I did ask someone to bring the information in that they got off the web but they said no because it was all pretty negative stuff and it was stuff saying the vast majority of people who have the type of stroke that I had die.

Have you looked up any information about stroke?

Oh yeah. Internet, yeah. And read it big time. I’ve looked a lot into it, yeah. Mm hmm.

How have you found that information that you’ve found?

It’s very good. Very good. Yeah. Especially the preventive side, you know, how to prevent a stroke and that’s been good. It’s too late for me but looking at all the things now, what you can do to prevent a stroke is excellent information and, don’t get me wrong, the, the post-stroke is good too. It really is good what you can do.

Can you tell me about some of the things that you’ve maybe found out about that you were surprised at?

The first real surprise was how many people have strokes. That’s a big, big thing. I was really surprised at that and the Different Strokes website theres a message board and that’s excellent, you know. But that was a big thing, how many people have had strokes and another thing was the difference between Scotland and England. Theres a big, big difference. I’ve read letters from England, they’re people saying that they’re waiting on physios to come and see them. They, they’re on the waiting list for a physio and things like that and I can’t understand that, understand that because up here, it wasn’t a problem. Don’t get me wrong. I had a fortnight’s wait but they were in and they were really, really good and I had them for 7 months. But it seems down there, there seems to be a kind of waiting list or the treatment’s not that good. So that’s one of the things I found surprising too from the website.

You mentioned throughout about information. What’s important to you about getting information about stroke?

Well, for instance, when I had when I first discovered I’d got post stroke pain, I discovered that the occupational therapist that was treating me at the time had never heard of it and I don’t think the GP I was seeing at the time had ever heard of it and I only heard of it because I asked for information about frozen shoulder and the information, the booklets, the very good booklet that the Stroke Association sent me about frozen shoulder was mainly about central post stroke pain. I think frozen shoulder is part of the whole thing of it and incidentally that only happens if you’re not in a stroke unit and the nurses where you are don’t realise that if your arm isn’t laid in a particular way at night when you go to sleep and you lie on it, you will get a frozen shoulder but there are hardly any stroke units and so that would be something useful to know in case you go into hospital [laughter] because a frozen shoulder with central post stroke pain is the most terrible pain. It’s the most terrible pain I’ve ever had.

The trouble is when you start looking at things like that, you get contradictory stories. You look on one thing and it says something and you look at something else and it says something different. I’m a great reader of the Express and the Mail. I always look at their, their health thing and get all sorts of tips from that and that sometimes mentions stroke and things. But I don’t, I don’t generally, no because you start getting into the realms of what you don’t want to know possibly.

What’s your view on getting health information?

Well, I avidly read, as I said, the Express and the Mail on Tuesdays when they both do a health thing and I sort of look through for bits that interest me and I’ve got a whole pile of pages that I’ve saved under there that are giving tips about various things. I don’t look at them very often but occasionally I’ll look back on something and, and say, ‘Well, that would do me good or that would do me bad but you know they have come out recently the fact that omega 3 you’re wasting your time. What do you believe? You know, I always feel that I try and do the right thing I only eat omega 3 eggs and I like eggs and I feel if I’ve got eggs that’s doing me good instead of doing me harm, then I might as well, I know it costs more and I’m probably an idiot but I just feel, yeah, just doing the right thing but you never know, do you? [Laughter].