Well, I just thought it seemed a bit like Parkinson’s I mean I, I’ve seen people with Parkinson’s
all my life. The first one was when I was a small boy and my mother used to take me to visit the gynaecologist who’d helped me be born, who was a Jewish refugee living in London in a flat, and he was very bent and shaky. And, you know, she said, this is Parkinson’s. And when I was at boarding school there was a retired teacher, who lived on the premises in a rather remote flat, who had it and would come out at night because he was embarrassed to be seen in the daytime. So both of those I suppose might have set up more sort of fear in me than it, they did. But, oh, and I mean, you know, if you’ve got a series of symptoms building up you begin to think, what could this be? And it became a fairly obvious explanation so I don’t claim any great skill with that.

The seriousness of it is is because the drug manufacturer it’s claimed knew that this was a problem with the drug and didn’t warn anybody about it as a potential side-effect. Being qualified as it were with a degree in psychology and neuroscience I’m very careful about all the drugs I take. I read all the instructions from word for word, everything, all the side-effects so that I know what I’m dealing with. There was absolutely no mention in any of these drugs about potential compulsive side-effects. And that’s the basis of the law-suits now. Not that it causes these side-effects but that nobody was warned about it and the drug manufacturer knew.

So the first thing we did was beetle off down to the library to find out as much as we could about the disease. I don’t know that we learnt a lot. There was, it was a lot of highly technical stuff in the library. But where did we go from there, we, we sent away to the Parkinson’s Society for booklets on various aspects of the condition and took it from there really.

And the type of information that you were looking for. What was it you wanted to know?

Well how the disease, I knew little about Parkinson’s. It had never crossed my mind that that’s what was causing this tremor and I knew nothing about the disease and I wanted to know how it would progress, how it would manifest itself and what the prognosis was for me. My job was fairly demanding and it did entail a lot of driving. As it ended up I took early retirement in the end because I couldn’t cope with the job and the Parkinson’s. And thank the Lord I did do it.

Okay. I just wanted to ask you a bit more about the health services and the service that you’ve got from the health service. Is there anything you think could be provided for people with Parkinson’s within this area, that could be improved?

I think knowledge of the condition, information about the condition,could be improved greatly. And I feel, we in the branch to which I belong, have over the last couple of years, have started putting up literature in hospitals and Gps surgeries and I would like to think that that is giving people the opportunity to find out just at the time when the, when the news hits them that there is some information and there is somebody they can talk to, because that’s vital.

then came back and sat down and looked at us both and he said, I’m sorry to tell you He said, But I, I think you have the early onset of Parkinson’s Disease And, you know, [my husband] looked very shocked and I’d got all sorts of things going on in my head and he said to us, I don’t want you to go away and start looking at things on the internet He said, I’m going to ask you to come back and have an MRI Scan And he said, And then we’ll take it from there But of course the one thing you do is you go back home and you look on the internet and you do start, you know, thinking well what does this mean? What’s going to happen?’ and it, it was a real shock because it was something, I thought it happens to older people. Very naively I didn’t realise it affected younger people.

I have two good friends and one happened to be a GP and the other is a practice nurse, whose husband has PD. And the GP friend said to me, You need information, it is better to know the worst than to not kno. And so she put me in touch with the Parkinson’s Disease Association, who were very good. They sent me little bits of information as I requested them. They didn’t bombard me with information which would’ve been a mistake I think. And little by little I found out about PD, still having no certain diagnosis. But the more I read and the more I discovered the more sure I was that this was my problem.

The practice nurse friend lent me a book by an American who had had PD for ten years before she wrote it. And her circumstances were in some ways quite similar to mine, in that she had to give up teaching because of it and the emergence of her symptoms were similar to mine. But she was so positive, so upbeat, so enjoy every minut sort of person that she made me stop being afraid and helped me to cope with it. She gave very good advice such as see a physiotherapist, get some exercises to keep as fit as you can. And after a year I went to see the neurologist again and I said to him, I want a diagnosis. I want to know. I don’t want to be unsure about what’s wrong with m. And he said, Yes I’m sure that you’re right. It is P. And that was five years ago almost exactly to the day. And I’ve joined the local Parkinson’s Disease Society. I’ve met some wonderful people and I think that being able to help them has helped me enormously.

Well, I looked, yes, I did, I mean both, the people I, I know now who’ve got it, are both, I discovered them by accident and then pursued them. I don’t go to the Parkinson’s Disease Society local meetings and I ought to. I’ve no objection to going, Im not.

I did join, I, something called YAPPERS which is Young Adult Professional or something, people with Parkinson’s who are still up and about and not old, not old. The branch I joined seems to have petered out or if, if it hasn’t it’s lost me, my mailing list address. Nothings really happened. I must make, I must make more effort about that because I am curious to see what other people experience and, after all you can often pick up tips. I think it’s important to try to share problems and look for solutions jointly.

Yes, how old was I? Let me think. 55, I was 55, yes. Yes, of course I thought Parkinson’s was an old persons’ disease, but again you realise when you read that it’s not necessarily.

Well, I deliberately didn’t really want to join the Parkinson’s, local Parkinson’s Society, because I thought I would be depressed if I went there seeing lots of people in wheelchairs and seeing people much worse than myself. But I did get in contact, somebody put me in contact with a well-known writer [who lives here] who had Parkinson’s. And we used to meet every month, and we used to meet over lunch and just talk about our symptoms, and unfortunately he died recently. But that was very useful actually. The only thing is that my Parkinson’s wasn’t progressing as quickly as his was.So that was a bit depressing for him. But to actually talk to someone whos very articulate is, is quite helpful. And of course I joined the Parkinson’s Disease Society, the, the national one and I find their magazines are very helpful. And then recently my doctor friend said that she had a patient who had Parkinson’s and who was involved in the [local] Parkinson’s group, and would I like to meet her? So I rang her up and I, and I’ve been to one or two meetings. The first meeting I went to was, actually my consultant was there doing a question and answer session. And the people that were there all seemed much older than me. And they weren’t too bad at all.

They were, I think there was one in a wheelchair. You know, they weren’t in any bad state, which shows you that the Parkinson’s drugs have improved considerably. And this is in fact what the, the lecturer they had, my consultant said. He said, I’ve been doing these talks for many years he said, And say fifteen years ago I would have been in a room like this and everybody would have been twitching and moving round. And here everybody’s sort of normal. And that was quite heartening.

I only I’ve seen three programme on televisions, one was about Mohammed Ali the ex-boxer, yeah? That I heard that he has a Parkinson, due to the damage brain or whatever, and I saw one programme, the great interest, that a bloke had his surgery done in France, took twelve hours to operate, they put a cage on his head and whatever, you know, he was a journalist, British journalist. There was no cure available in the UK, or some other reason, and he had that treatment done in France and he recovered, and I watched that programme very carefully and deeply got involved in it and it looked so frightened, but then when I, when I heard that, they’ve cut the operation time from twelve hours to about four or five hours then it was encouraging that at least technology has gone advanced and, and the third programme I saw was in a local, not local, national newspaper that it say, I’ve still got a cutting upstairs, that a famous TV celebrity, you know, British celebrity had this problem and he was a cook on the TV, you know, and he used to cook brains and ears and, God knows what you know? He said it was a time that it’s his brain is being cooked, you know, you know? So he had a surgery done and, he explained in the newspaper, you know, he wrote the article himself, you know, that he’s feeling a lot better compared with what he was before, you know? Eating with the family on the dining table and the spoons flying away and things like that you know?

So one of the first things I did when I was diagnosed was to get on the internet and start to search for information and I came across several websites which were support group type websites for people with Parkinson’s and their carers where you all get together, exchange messages or post stories. And then I wrote a few short stories about having Parkinson’s about my experience. That were put on the website just for people to read and things like that. But all the websites we came across tended to be US based because it’s a bigger country. There’s more internet use in America and I think they’re more familiar with the technology so they tend to gravitate towards the internet so any website that pops up, yeah, so any website that pops up would tend to be not overrun by US based people but there would be a majority of US people on it. Like you could set a website for Parkinson’s disease and maybe get one in a thousand Spanish people come out so where do all the Spanish people go? Or one in a thousand Belgian people. Where do they go for information?

Anyway, on one of these US websites I met a woman with Parkinson’s who lived in Birmingham. And we got chatting and started exchanging e-mails. Then it turned out she was a web designer and we discussed the fact that every website you go to is US based and the information is US based as well. That was the important thing about these websites is that people give you information about doctors and hospitals and treatments and it’s all US based so it’s not really a lot of good to people in England.

So this friend of mine and I decided that we would set up a website that was based in the UK and contained UK based information. So that’s social services information, benefits information, NHS drug treatment, you know, all the everything would come from a UK based source. So we set up this website and I paid for it. Which was okay at first but then it started to grow we ended up we started with ten people, then twenty people and after a very short time, six months we had like a thousand members and started to be a lot of US members. So the message board started to fill up with US based information again and stuff like that. And as it expanded we needed more and more server space and it became and I was paying for this out of my own pocket with no way to get any income from it. And I didn’t want any income from it but I managed to carry on paying for it for a couple of years but one of the problems I found with it was that it was very difficult to control misuse of it. And that that was people coming on misusing the live chat rooms, misusing the message board.