Tell me what’s involved in taking part in that study. What do you have to do? How often do you go and what happens at each visit?

The [Motor Neurone Disease] study is, as I said, five years in duration. I have to go every six months, and interestingly enough the tests that one has to undertake have changed slightly in that 18 months that I’ve been going so far. There’s an eye test that has been added, which is quite fun actually, because it involves following a ball or following things on a screen with your eyes. And it can be quite tricky, some of the questions that are asked. Other aspects of the study is to take a 50 minute MRI scan, and I’ve had several, I’ve taken several of those in the past, and it’s not a pleasant experience but it’s always interesting. Recently I’ve had to have help getting me onto the MRI scanner, but that is something that the staff there will do for you so if – well, in my case I can’t move my legs or my arms, basically – but I can still get onto the scanner so that’s not a problem. There’s a blood test that’s taken as well, which again doesn’t bother me.

Do you get regular reports from them about how the research is going?

Yes, to some extent. Certainly the last time I turned up, which was my, well, my third attempt – my third sitting, shall we say – the neurologist was very enthusiastic with the result, well, about the results he’d received so far, and he was hopeful that in the relatively near future he would be able to publish something that would [clears throat] help in the diagnosis of MND. And I mean he was hoping that was what he was going to find, and it seems that’s what he’s achieved. But quite whether it’s the blood element, or the MRI scan, or the lumbar puncture bit of it, or perhaps a combination of all three, I don’t know – and the eye test as well – so from my point of view there’s about four different… studies that he’s – not studies – four different elements of the research that any one of which I suppose could help the [study name] research.

Well, as far as the neurologists, the MND doctors that I’ve met, this isn’t necessarily answering your question, but I’ve found them all to be very eloquent, very helpful, very nice people. As I said before it’s, I find it amazing that they can carry on doing what they do, helping people with MND, even when there is so little they can do, and it must be so frustrating for them. I know it’s probably more frustrating for the patients themselves, but we didn’t have any choice as to whether we’re going to have our condition or not, and these doctors have decided they want to help people with MND. And long may they continue to do so.

I like the idea, I like the feeling of being able to help other people, and if it was, I suppose I’d still be keen to help other people even if I knew it wasn’t going to help myself. I did take part in another research project that was to do with drinking fruit juices, and that seems fairly innocuous and easy to take part in, but I had to drink a particular fruit juice, oh, once or twice a day? Anyway I lasted a couple of days on that project and the fruit juice tasted so foul that I just – I mean, I was given a month’s supply and told to take, you know, two of these every day, and I just said to myself after a couple of days, this is, this is too painful, it’s too much like hard work. And I just sent the box back [laughter] with my apologies and for wasting their time and they were very good about it, and they didn’t like the stuff either, I think.

That’s quite a problem. it’s got to be palatable, hasn’t it, if people are going to comply with the treatment?

Indeed. I have no idea what it was… supposed to achieve. It was some university project. But also, as I’ve said, it’d be silly to say, if a cure could be found for MND in my lifetime, then I’d be foolish not to want to take part in research to help find this cure.

I have donated my brain to a brain bank in [county]. That’s… was surprisingly quite difficult to manage. Apparently it is useful, or will be useful, for my brain to be donated, but the – just to be a bit negative – the paperwork involved was awful. And it was written in, well, by – let’s be rude – by, if you like, a PhD student who put everything in medical terms, and I didn’t have a clue as to what many of the questions meant. And I took it along to my consultant neurologist, and he took one look and he couldn’t understand it either. Anyway we got a simplified form out of that and…

Was that the information leaflet or the consent form or?

It was a sort of questionnaire that went along with the… my request to donate my brain. But as I said, both I and the consultant were fairly appalled at the uselessness of the questionnaire.

So that was…………

But it was about – I can’t give you examples – but it was, would I mind giving’, if my brain was given to some – no, I can’t even think of the examples, but it was just put in language which was beyond me.

And that contrasts with your experience of the (Motor Neurone Disease study name) study?

Oh indeed, yes, and any other study I’ve taken part in. They’ve always been straightforward and easy to understand, and I mean this isn’t a research project and it’s just a matter of me donating my brain, but it’s speaking the obvious to say that if you can’t fill the form in, then what use is donating your brain? Well, you’ve got to make the, make life easy for people.

And is that an MND-specific brain bank, or other neurological conditions or?

I think it was other neurological conditions as well.

And so I think any brain tissues that can be donated, particularly from people with MND, would be well received.

Was that a difficult decision to make or – I mean, did you talk about it in the family or?

Yes. I haven’t gone to any great lengths to do so. I mean I talked it over with [name] – sorry, my wife. But again it’s a bit of a no-brainer, to use an odd colloquial term. If it’s going to help – well, obviously it won’t help me – but if it’s going to help other people then why not? And I’ve certainly no wish to be buried in a grave, I’m not religious, so if I’m going to be cremated they might as well have my brain beforehand.

One thing I don’t take part in and that’s – I’ve forgotten what it’s called.

A lumbar puncture?

Oh yes, sorry, yes the lumbar puncture. I had one ten years ago when I was first diagnosed and it wasn’t a very pleasant experience. The consultant asked if I could have some, or if he could have some trainee doctors in to help me – well, not to help me, to take part in the process to see what a lumbar puncture involved. And he also said that whatever I did I mustn’t, whatever I do I mustn’t move. And so we started off with the puncture, and he and the trainee doctors all had a chinwag about what the weather was like that day or whatever, forgetting me, the patient, and I started getting a bit panicky, I was – and in the end I shouted out to one of them, or shouted out to them, I’m the patient here. I’d like a little bit of confidence-building, pleas, and then I got, well, one of them started talking to me, which is all I wanted, just reassurance and comfort, comforting. But it’s put me off lumbar punctures from then on. And I’ve heard plenty of good results with lumbar punctures, but in the [Motor Neurone Disease] study I’ve been told it’s not essential for the study for me to have a lumbar puncture, so I’ve decided I won’t.