I’ve had some fantastic effects. All my life I have had sleeping problems. Suddenly I can, when I go to bed at night I fall asleep [laughs], quite simply. And to an insomniac, which I have been since I was a child, so it’s something familial perhaps. But it’s so fantastic [laughs]. Apart from that, I don’t think well the, the tremor has gone, or is being kept in check by very small doses of a different or a differently working drug. And I am in need of no Levodopa and I think that just as earlier I have good days and bad, I also now have good days and bad, but the fluctuations are much less. And therefore I often forget to take my medication. it’s not so, not as serious as it was. So that’s I think the gist of my story [laughs].

So what impact has the operation had on your being day to day life now?

Well you know the operation comes at the time when I’m ready for pensioning so there’s a big change anyway. And I, I can’t say that I experience, you know, it’s strange I, I don’t experience much change. But that is because of my denial of the disease in the first place and in a way I can see the change more in the reaction of my friends because they can’t stop staring at me [laughs]. And now they confess that, oh yes I, I was really shaky before and they were sometimes scared by what they saw, although they didn’t tell me. And myself, I was inside, I was never shaky [laughs] I, I wasn’t much, much influenced by that disease. It never, I never allowed it to take me [laughs], so I never became a patient.

I’ve been a driver since I was twenty-one and got my licence and we have an ordinary car and I had difficulty using my right foot because of the shaking. So I learned to, it was an automatic gear car and I learned to use the left foot.But now, when I was dyskinetic which I was sometimes, I did find I had to concentrate very much to keep on track and maybe my driving was a bit unsteady. So once I was haunted by a lady whoinsisted that I must be drunk and there she even managed to get the police to believe that. Actually I wasn’t drunk of course, but I had forgotten to tell the police that I had Parkinson’s. So he discovered that and felt so elated about his finding that he took my drivers licence. So that was a, a bit of a setback but I got it back but with the message to get a new one, a new licence or a permit every second year, which was okay. I mean you need to keep an eye on these people.

But after the operation of course my right leg didn’t bother me any more, so I could shift back to the right leg and I’m not dyskinetic so I’m back to my normal driving. And well, still I have to go every second year and that’s okay but that’s a total normalisation of a function, I must say. And it’s very good for, because we have a veteran car which is not automatic and I’m the only person who can, can manage to gear down so my skills are needed.

Oh I was often speaking and giving presentations and I used to say that, I used to start by sort of [laughs] attack is the best defence, so I told people I, I said, You will probably notice that I’m shaking a bit. That is not because I’m nervous or afraid of you, but I have Parkinson’s Disease And I could then see a ripple through the congregation, Oh what a heroic woman,’ and then they forgot. And I said, I also usually said Please try to overlook it as I do and I could again see that they were impressed. And then they did overlook it, so we laid that to one side. But of course sometimes I got so dry mouthed that I had to ask for water, that was a side effect. But apart from that my little introduction usually did it.

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 looked at my legs, I was actually sitting on the beach and one of the legs was shaking but it gave me no associations. So when I was diagnosed I wasn’t shocked or anything I was, I just accepted it. And I think acceptance has beenacceptance and denial, both have been my attitude to the disease. Acceptance of the fact that I, I was suffering a lot from tremor but denial that this in any way influenced me.I had a job at that time which was quite demanding and I continued to, to let me be in demand and I was responsible for a [public health] programme.

I am constantly surprised by the neurologists. They go after neurological symptoms. My physiotherapist goes after muscular symptoms and I experience in addition, cognitive and other symptoms and feelings that together all of this is the illness. And we have now one specialism taking care of each of these compartments and that’s somehow frustrates me. And I wish that one day the neurologist would reach out to the physiotherapist and say Ah, this must be the reason why that is the result And now that we have this wonderful deep brain stimulation possibility of abating some of the symptoms, maybe it could be done even more targeted, if they understood why this neurological function has that muscular result. So I’m actually asking for a Leonardo Da Vinci.