I kept forgetting and I had to be reminded. I had clocks and I tried boxes and I tried various smart contraptions to remind me, because as long as the medication’s worked I didn’t think of the disease. And then I let too long time pass and then suddenly I would begin shaking and I had to wait until the medicine worked and I managed on several occasions to forget to take the medicine with me when we were going on holiday or out travelling. And I have a wonderfully patient husband who has helped me get levodopa in the most unlikely places, such as, Australia, Rome. So I know all about how you can get a prescription drug in various parts of the world. But that was again the denial I think. That when I packed I thought of everything apart from what I should have for my disease. I have never talked about it but that’s also part of the denial, and whether it is healthy or not, I cannot say. I had friends. I had one friend who insisted that I should become a patient like she was. She committed suicide a year ago and I think when disease becomes too overwhelming, it’s hard to bear. And it may be better to deny, I don’t know.

I’m not very good at taking pills because I forget. Like yesterday we had a something happened in the morning which I had to go and deal with quickly and I hadn’t taken my tablet and I got to about nine you can feel. it’s a funny feeling comes on but I just had them in my handbag luckily so I just take them. Takes about fifteen, I just have to sit down for fifteen, fifteen minutes until it kicks in but I am not very good at taking them.

Do you actually do you forget quite a bit?

Yeah. I think I’m somebody who has always got a lot going on both in your mind and in my life and I yeah, I don’t put myself first very often. I don’t think in the morning I’m like, do you know what I mean. That’s my own but it’s not too bad because.

I mean does it often happen that you only take them because you suddenly get some symptoms?

Sometimes. I mean generally I have a routine in the morning. Monday to Friday is okay because the kids go, I do their lunches and so I tend to remember then, but I am better because now they wear off whereas before it didn’t wear off so it didn’t matter to you either for quite a while. Now, like you said, I suppose I do suddenly get a funny feeling and I think, Oh gosh, I haven’t had it So yeah, probably that is true.

The only main person that really gives you help is yourself and the carer. You have got to actually, with my tablets, I know more about how I take my tablets than my consultant. I tell him what I take and he says, All right. Carry on then As long as it stops the tremors and stops the staggering around, the drunkenness – because it does unfortunately give the impression you are drunk with the mobility problem. I occasionally get strange looks in Tesco or that thinking I have been drinking that early in the morning and I am staggering around. Sometimes I say I wish I was, but it is unfortunate that [with] the Parkinson’s, in between tablets creates problems. Just, you have to live with them. You don’t want to, but you have to.

And the tablets that you take. Which ones are you taking?

The prime factor is Madopar. And if you want to towards the end I will go and get the tablets and show you what they are. I take those four three times a day normally. If I am going out enjoying, if I am going out dancing then I take another boost. Whoever it is I go out with expects me to go home at 10 because that is when they all, that is when they usually finish. But it’s difficult. It is a very difficult illness to live with.

I was lucky that although I’ve actually had the disease for ten years it hasn’t until recently really affected what we’ve been able to do. I find that we did a lot of walking and we’ve not been able to walk as far or I’ve become more tired. I did lose a lot of confidence with going out with friends and worried that I wouldn’t be able to walk so far, so tended to decide not to do it. I lost a lot of confidence going out shopping on my own and would always make sure I was with somebody. But I’m beginning to sort of learn that I can do it and I just have to make sure I time it right with my tablets and not do too much really.

Yeah I self-medicate completely and sometimes I have real problems with my chemist and my doctor’s surgery because they just contemplate self-medication, ridiculous, you know, how can anyone self medicate?’ and because I have a brain.

So what are the kind of principles of your self-medication?

Well basically I mean I take a pill when I need one and I know when I need one and as long as I know that taking too many pills is bad for me because there’s, I’ll get the side effects so, so. it’s a case of, you know, I know what, no-one knows what’s best for me other than me because I know how my body feels at any particular time, I know that when I’m, when my, if I’ve eaten too much or if I’ve eaten any food and then, and then I, my drugs kick out then I know if I take another pill with a full stomach it’s not going to work. So I might as well wait for a, for another hour and a half and, and suffer from the tremor and then take a pill rather than try and take a pill immediately, but, but you see not, not everyone’s like that so.

Yeah the decision is based really on, on a, a sense, perhaps mistakenly that actually by freeing my body for, for eight, eight hours or so from any kinds of, any kind of pill that perhaps it will recover itself in some way without being stimulated or artificially. What I’m trying to do is get my brain to naturally produce the good things, the good dopamine and etcetera and, and actually I’ve found that, if I don’t take pills at night sometimes in the morning if I’ve taken, if I, everything is going right then I can get up and I can go on the rowing machine without, you know, first thing in the morning without actually having any pills and actually I know that by the time I do on the rowing machine exactly what sort of day, day I’m going to have. so I can actually, I absolutely know from the time that I do, because I do the same thing every, every morning on the rowing machine, what sort of day I’m going to have so that, so that, that way I can plan my day and so if I’ve got too much on, on, on that day and I’m, have a really bad, I do ten minutes on the rowing machine which is a bad time then I can cancel a few things and because I know that that’s.

Well, the pills I take are levodopa in the form of Sinemet Plus and Sinemet continuous release at night. And each dose I take of the nine doses I take each day, has a Sinemet plus in it or the one Sinemet CR because that’s the common drug across the lot. Then at different times of the day I combine it with tolcapone three times a day, that’s the COMT inhibitor, ropinirole three times a day, that’s not necessarily at the same time as the tolcapone. But that depends. I vary the ropinirole depending on whether I feel the Sinemet is lasting because the life of the Sinemet is elongated by the ropinirole, makes it last longer. And so if I’m tireder I might front load the ropinirole for instance for the day. Instead of taking one in the morning I might take two and if I feel more tired I’ll take less later on.

So those are the main drugs but on top of that I take something called amantadine which is supposed to help you be less dyskinetic from the Sinemet. I am quite dyskinetic today, I’m not usually, but when I’m tired and down a bit then I’m dyskinetic. I take temazepam which is a sleeping pill but again I don’t take it if I don’t feel I need it because I don’t want to become addicted although I probably am. I take diazepam which is Valium which again I take if I feel particularly anxious. And with the Sinemet sometimes what I do is take half a half a Sinemet. If I need a little top up I do that. But what I must never do is exceed I must never have less than an hour between doses and I mustn’t exceed the total amount of what I’m supposed to take in the day. And depending on the circumstances I may front or back load particularly the ropinirole and the Sinemet.