We are all like building blocks of society, so we have a like a triangle, right, so most of the information should, is coming from the foundation people and people like yourself or doctors/professors, they are in the hierarchies. They will overlook it, but they have not all the answers unless you connect with the people at the bottom, so which is myself, mothers, children, parents, grandparents. I think that’s why it’s very important that the research team works closely with the population because at the end you will solve us, you will solve our problems. You will help us to understand future diseases, future problems so that’s why I believe research is a very good thing.

I would encourage it as long as it is a bona fide genuine- probably a public authority who you can trust – and to do the right thing. I, you know, there are so many companies out there looking for information about everything now, you know, surveys back for this and surveys back for that not recommended at all but if it’s a genuine bona fide company looking for long term solutions to problems then yeah I would encourage it.

I think it would have been. It was at [name] school and I went there when I was eight and I think it started there.

Okay.

I can remember being in a room, I think my brother was there as well, my twin brother was there as well, being in a room and somebody, we were, we had some sort of physical examination, I remember that. Weight, height, a few questions, but really that’s all I remember
Okay
nd I’ve never been examined or asked any questions since.

I think there are two sides of it. Can we find out about MND [motor neurone disease] in someone at an earlier stage? And, of course, is there a cure? That’s got to be the ultimate. Or is there something that can stop it from spreading so quickly or happening so quickly? I mean they, one of the things that I found very interesting was when they compared MND with polio. Now, that’s something that I wouldn’t have found out without talking to the team about, and they were explaining that they’ve looked at people with polio, and polio tends to affect either a right or a left hand side of the body. Whereas MND crosses from the right and left and it can hit any, any limb at any time, and they don’t know why. So trying to be very open about how they’re looking at these things and explaining these things to you. I find it great, you know, you just feel that you’re part of the team.

Do you think you’re also getting sort of privileged access to information about the latest research?

I’ve no doubt about that, yes. I mean, they’re, any question I’ve asked they’ve never been afraid to answer. I mean for instance, there’s been this lithium test, this new, a drug based around lithium, I think it is? And I was put forward originally, to be part of a group that was going to try it out, and unfortunately, because of my medical history they weren’t able to accept me into the group. But I’m still allowed to ask lots of questions, you know. It materialised I think in Italy and now in America and the UK it’s being widely tested on people to see whether there is an effect that’s coming out of it. But I wouldn’t have known about this if they hadn’t been open and discussed these things. So yes, it’s educational as well as anything.

The format’s the same so, you know, there’s always a covering note just checking your address and everything that you’re still living where you’re living. So I think, I think it’s, I think we’ve just got used to it over the past 70 years.

Apart obviously the classic demographic information is more or less the same each time. It covers lots of things like, you know, I think one of the questions is, you know, how you’re, how you’re feeling, are you more confident than you used to be or less confident than you used to be that’s something that I think is probably a bit of a leitmotif something that’s that goes through each time. But as I say you can just tell that they’re interested in a particular aspect or two or three particular issues really each time, and they vary from time to time.

They always come as paper questionnaires, that’s interesting, you know, it’s never been done electronically, maybe they think because of our age that we, you know, that we may be less conversant with electronic techniques I don’t know, I never thought about that.

[Laughter] And you’re happy with the paper version, or would you?

Happy with the paper version. I mean, one could do it electronically but I think somehow the paper version is quite good because you can think more about it, you can sort of reflect and look at the questions in more depth. I know doing other things online you just go through from sort of frame to frame and don’t bother to think, oh maybe I shouldn’t have said that, maybe I didn’t think that way. But with this, you know, you know that if you, if you think, no maybe that wasn’t quite right,’ you can go back and alter it easily.