Well, yeah, I’ve, I found the professionals really helpful, supportive, as I say, speak plain English, are prepared to put up with one’s individual mores and, and idiosyncrasies, indulge people – well, they’ve indulged me in taking, I’ve been supported in everything I’ve done, whether the team may have thought it clinically appropriate or not. And they’ve always been there, and if I need help or I need to change meds or whatever it is, then they’ve been easy to get in touch with and very responsive and positive, which doesn’t mean to say that they won’t tell you about negative things if you ask. But they’re not bombasting, bombarding you with awful things at the beginning. There’s very much a feeling that you can come to things at your own pace, mm.

And is there any specific message about how to involve people in trials, from the way that you’ve been treated?

Well, just by, I can’t – one can only do what one can do, and that is to try and influence one’s own social network.

I was thinking about the professionals and how they interacted with you over the trial.

They were, well, they were great, you know. I mean, I felt informed. I may have forgotten since [laughs]. Again I felt supported. I was given lots of information in a very positive way, at a time whenI could have been really emotional – I don’t know, I suppose I was – but that I was relieved and pleased that I was able to make a contribution. Yeah, that’s right. Mm.

Yes, because, yes that’s right, pleased to be able to do something positive, turn it round out of something pretty negative.

I think one of the things that I actually find quite irritating is that people – I understand that money is, is an incentive. I want good health. I don’t need rewarding. I find it quite off-putting. But I do understand that in order to get volume in trials you’ve got to have some kind of incentive for people to go into them. And if they’re not aware or they haven’t got health problems of their own, then I can understand how it’s come about. I’m not comfortable with it at all.

So you’re thinking about the ones where it’s the first time they’ve tried it out in people and they pay people to come along and take part.

Well, it isn’t only just first time. I mean, quite a lot of them are well advanced in the research so, no, I just, I’m not comfortable with the idea of being rewarded to do something which I do because I think I should be doing it. it’s morally right.

If people don’t volunteer, they’re never going to make any progress. You’re going, we need to find out which is the appropriate drug and if the majority of doctors are prescribing something else – it’s quite helpful as well to know about what there is available, which you don’t know immediately you go in, but then, of course, you become informed, so yeah, yeah. it’s important that people do volunteer, if they can. I mean, I was in a fortunate position in that I’d already taken early retirement from education, so I, it wasn’t a commitment that was going to take money out of my pocket or interfere with a job. I still would have done it regardless, but it’s easier that way, mm.

What kind of things are they interested in asking you about?

Well, it’s very much like the social services check list. Motor, the symptoms of your condition, how are they? How do you manage? it’s the same form over and over again. it’s a repetitive one. How is it affecting you? Are you taking longer or how long does it take you to do various things? How is it affecting your relationships and your emotions and? it’s quite thorough but it’s very, very similar to the thing, when you have to fill in for disability living allowance and things like that, yeah. it’s quite similar to that. it’s not the same and I don’t feel pressured, so yeah.

I think the bit about how it affects your social life and emotions and family is quite an important one, and I can understand that they want to keep monitoring that, because with a regressive conditionthings could change quite dramatically, although for me they haven’t, but yeah.

How would you have felt about a placebo trial, if it had been offered to you, where you might have got a drug or you might have got nothing?

I would do it. My mother-in-law did one for tamoxifen, when she was diagnosed with breast cancer. And I took her along to the various – to her clinics and sessions and talked to people there, which was quite a long time ago, sort of fifteen years ago. And I thought well, if it – I mean, you can’t project – but I’d like to think that that was what I would do if I was in that situation. Mm.

[Sighs] it would be hard, I suppose, but then how – you’ve got to go through the procedure because you’ve got to satisfy the authorities that the drug is capable of doing what it says. And you’d never get new drugs, would you, if people – you’d never get them ratified and if people don’t volunteer. So, yeah.

I mean, some people tell me that their main reason for taking part in a trial is more to get access to a particular type of treatment, or to, that they feel they’ll get better care if they’re in a trial. It doesn’t sound as though that was at all part of your thinking, really?

No, no it wasn’t. And it wouldn’t be. I mean, there are, as I mentioned there’s a drug earlier that I would have love to have a go at, but I know that if I went into a trial it would be random as to whether I did. it’s interesting, the placebo thing, though, isn’t it? How many people do make progress because they believe that they’re taking something that’s doing them good. I mean, yeah. You know, I, it wouldn’t – no, I’d have to do it if I had the chance, because we wouldn’t have those new developments. We wouldn’t have them ratified. We wouldn’t have the treatments if people didn’t.

it’s very much a pity that the, the recent news – good news is not news, is it? So the trials where those volunteers were paid, and then had a really adverse reaction, I’d rather we didn’t get that kind of publicity. I think we need to get the more positive kind, yes. We need people to come forward and say, I did a trial. I didn’t suffer any- – well, maybe you did – but that it’s better, for the good of everybody it’s better that you should go through some discomfort yourself. Mm. Otherwise we’ll never make progress.

I mean, the big turning point for me in terms of my own personal well-being and physical well-being was when I found out about acupuncture. I was actually having acupuncture for pain by a physio in the national health, because my back, the discs have gone wobbly because of the Parkinson’s. And she referred me to somebody who trained, her trainer, who actually does five-element acupuncture. And he’s, he was an anaesthetist, his wife is a GP. They went to China for a sort of a gap year years ago, stayed for two, learned the language and now practice, and it has been wonderful. But then you read in the paper all these things – charlatans’, alternative therapy’s rubbish’, you know.

But I think it would be interesting to see some proper research on, on alternative and complementary therapies, because I talk to so many people, like when I go for hydrotherapy or whatever, whove tried different things and they’re convinced that they worked. But you can get, then you get – you’re prone to get – these people who say, it’s all charlatans and con-men, and there really isn’t any evidence Well, that’s probably the, actually the answer. There isn’t enough evidence. It doesn’t mean to say it doesn’t work. It just means to say there isn’t enough evidence [laughs].

We tend to get the same people on each of the forums, and I’m a bit wary of them because – not wary of them, but [sighs] you get this thing of like, Oh, was it because I bumped my head? What caused the Parkinson’s? Was it–? For me it’s, it’s actually been relatively easy. It’s to do with organophosphate poisoning*. I’m fairly certain. And I’ve been able to do a lot of research and find that out. But then you get, you know, Well I had a head injury or I had migraines or I – smells, there’s something about people lose their sense of smell and often go on to have Parkinson’s. And I’m thinking, ‘Well, hang on. I breathe and I’ve got Parkinson’s.

There seems to be, they don’t seem to be able to differentiate between things that are parallel and things that actually meet, and so a lot of supposition is going on that is weird, I mean, that I actually don’t think there’s any quantifiable way of – I don’t think it would quantify, because it could be drinking coffee or smoking cigars. It’s that people have got to find some kind of a reason.

And it may not be. I don’t know. With me I know it’s not genetic because I’ve been, I was doing the family tree anyway. For some other people it might be.
* FOOTNOTE:The Parkinson’s Disease Society reports that environmental and genetic factors are key areas of research into the cause of Parkinson’s. Most scientists agree that a combination of genes and the environment conspire to trigger the disease, though exactly which genes and which external factors is still not clear. Exposure to pollutants and pesticides has been put forward as one likely environmental factor.

And having been diagnosed, the first clinic that I went to, the first visit to the neurosurgeon was, he asked me if I’d like to do a drug entry trial which was being run from Birmingham. they’re trying to find out about – there are four commonly prescribed drugs on entry when you’ve, it’s been discovered you’ve got Parkinson’s diagnosed.

He rattled off the names of the four, which didn’t really mean a lot to me, except Sinemet which I’d known somebody whod had a really bad experience with. And so I said, Okay, what’s involved And he told me. He said, Well, you know, we, I would prescribe something normally, you won’t know, but in this case if you’re in the trial, I’ll phone Birmingham and they will randomly allocate you a drug which you then have to agree to take for- I think it was it was either a week or a month, I think it was only a week. –as a minimum. You must keep taking it And my husband was also involved. We fill in – there’s a follow up, so that we fill in questionnaires every six months, me from my perspective and [husband] from his as carer.

We did, and they phoned Birmingham and I got put on Sinemet. Oh, and it was absolutely awful. I really thought I was dying. It gave me very low blood pressure, so that when I stood up I fainted or fell back down. I had lots of falls on the stairs, disorientated, slurred speech, probably like somebody totally inebriated, as you’d say, legless. And I frightened a lot of people because my, my mother, whos dead now, but I went to her place and sat down on the sofa and of course I went to get up and I just passed out. So it wasn’t just me, it was very frightening for everybody else. However, we stuck it for the minimum, phoned and told them straight away, you know, that it was a problem. And I took it for the minimum, which I think was a week, and then went back and got changed to ropinirole, which I’m still taking now.

But I’d had, I think it was explained very clearly what was wanted, and obviously one hopes to get whatever it is that’s going to be the most effective. But if you’re going into a trial you can’t, you’ve got to accept the fact that you have what you’re given, you know. I mean, otherwise there wouldn’t be any point in having trials, and I am very keen on trials.

And when you were getting those side effects, which sounded really quite unpleasant, did you think about pulling out at that point?

Yes, but I knew that there wouldn’t be any point doing it if I did, so I carried on, yeah. Yes, if [laughs] it’d had been a free – [laughs] if I wasn’t in the trial – well, I wouldn’t have been on it anyway – but if it wasn’t for the trial, then I would have come off it sooner, but when you’ve made a commitment, you’ve got to honour it. I mean, you know, it’s not very comfortable, but there wouldn’t be any point in doing it, would there?

Had they told you could pull out if you wanted to?

Oh yes, yeah.

Yeah.

Yeah.

So it was a kind of sense of duty to them and to research and–?

Yes. Mm.

Mm, mm.

Yeah, it wasn’t pleasant but there was an end coming to it, wasn’t there? So, you know, it’s [laughs] you’ve got to be prepared to do these things, haven’t you, otherwise we’re not going to make any progress,