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 who’d 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, who’s 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.
So it was a kind of sense of duty to them and to research and--?
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,