Parkinson's disease

...with this disease, I was still signing on at the local Job Centre, you know, and with this disease I could write and, write okay you know that I can’t write very well but I could write that very well, you know, quite fast and as normal, and I went to a job, I was offered a job and I went there and I filled the form, when I was filling a form in this, this chap who was interviewing me he noticed that my hand is shaking so he stopped the interview there he said, “Oh leave it there I will let you know.” You know? So the next thing was he wrote me a letter that sorry there’s no job, then I realised he must have noticed my shaking because in front of him I couldn’t write very well, but then, while this was happening I turned sixty, you know? And then the Job Centre people told me that, “You are sixty you can, you don’t need to come and sign you can go and, you could go on a pension credit, you know, you don’t have to come back every two weeks and sign.” So I went on a pension credit I’m, I’m a pensioner ever since.

I do think it’s probably wise to tell people when you have been diagnosed. I mean I don’t see how, as I said earlier, one could carry on developing the symptoms and getting, you know, very slowly but fairly steadily worse, things like walking. I mean my walking is, is much worse than it was two or three years ago. Otherwise they’d think I’d been drinking for heaven’s sake, shuffling around like this. You’ve got to provide some explanation. But I think it is problematic and I think one should be, careful at first and there are ways of, there are ways of telling people and I think I told X in the BBC far too dramatically “I’ve got Parkinson’s”. Whereas nowadays I would say... “Don’t sack me, I’ve got Parkinson’s” [laugh] or something. It’s very hard, hard one to, to handle.  And if you are able to be discreet maybe you should try that, but I think it’s, I can’t imagine not being open about it.

I remember thinking that, that ‘I was diagnosed with two conditions of the, conditions of the brain One was this Parkinson’s and the other one, and the other one was optimism and there was only one of them which was incurable and it wasn’t the Parkinson’s’. And, so what I decided to do was to, initially was to, was to do this walk, a walk that I’d always wanted to do because I’d, I had done a lot of walking while abroad, and, so I decided to walk from John O’Groats to Land’s End, and that was something I always wanted to do and I thought ‘well why not raise a bit of money while I was doing it for the, for the, for research and so. I did this and I just wrote to a few friends and family and was expecting to raise about one or two thousand pounds and ended up raising forty, forty thousand pounds which was incredible and I thought ‘well if I can do that by just’, It made me feel really good about what I was, people started saying that I was brave, I didn’t feel particularly brave but it was nice to be called brave, and, and that started making me think beyond myself really and, and sort of, because up until then it had been very much a sort of inward looking thing, I was looking at myself and trying to improve myself but, but it was after the walk that, after my first walk from John O’Groats to Lands End that actually I had, I took a slightly broader view and, and realised that, that the, the way to, the way to achieve fulfilment out of this thing, to get a sense of worth was actually to, to help other people with it because it, by that time I’d had it for quite a few years, I’d had it for about six years by now, and, no I’d had it for four or five years but , but it was while I was doing this walk that other people with Parkinson’s came up to me and said, “God what you’re doing is fantastic.” And that was, and that gave me a real sense of pride and a sense of fulfilment and, and, it, it, it really sort of heralded the start, the start of this new, this new sort of strategy for me which was not to look at myself as trying to, trying to cure myself but to actually to look at the bigger picture and, and see if there was anything I could do on a, on a wider scale. 

 

 

And, so from then on I’ve, I then decided that actually there wasn’t enough emphasis on, on the word cure with Parkinson’s Disease because I’d met the scientists who were talk in terms of a cure and these were scientists who had a look in their eyes, some of them they had a look in their eyes to, to, to suggest that actually they really did think they could cure it, and, and I thought ‘well why not? Why shouldn’t it be cured?’ and So since then I’ve, I set up this charity with three other, three other patients.

I think the work was the saving grace and the professor always said that to me, “Don’t give up your work until you absolutely have to.” And I haven’t now, you know, I do I work freelance now but I do things and I get people to come to me now. I didn’t think they would but they do. I thought well, if I left London, you know, that would be it. You’re not seen then you’re not used but people remember you for certain things and it’s surprising how many people live down this part of the world I found out. So and it’s quite a nice place to come to so I am gradually building up, not a business but a range of activities that freelance that I can still do and things that don’t involve physical activity necessarily. Like I write more now. I write articles and things because that I can do even if I’m stiff because I have voice activated software or I have [someone] who comes and helps me out and will I’ll dictate to her on a tape and she’ll type it up for me. So I’m never unable to write and that’s always an escape because whether it’s children’s stories I can write or an article. 

 

And I do keep up with the politics of Parkinson’s really because I think, you know, because I have worked inside and outside government I do know how the systems work and if there’s anything I can do to help other people it’s try and get those systems to work the best way possible. And, bless them, you know, doctors when they go to give evidence give it in such scientific language that MPs really don’t understand. So sometimes they take me along and I sort of wrap it up and try and explain in common sense terms what it means to me, you know. 

Yes [sighs]... it does wipe out your life, and actors of course don’t retire they keep going till they drop, so when I had to stop working I found it very difficult indeed because my sense of who I was was very intimately bound up with my acting, if I wasn’t an actor who the hell was I? What was I for? And I was very depressed for a time and found it very difficult. But I’ve got used to not doing it any more and now it seems to be such a frightening job I could never do it, when I think of things I coped with, as an actor, I mean silly things like quick changes and remembering which character I was playing and at what point in a play it seems to be very, very hard to do.

The biggest battle is getting money out of the government to pay for all the pensions and then you have got, then you don’t get the money straight away. The DLA come in, they send a nurse out, the doctor out as they did me and they work out about £14.50 a month [chuckles] and then you start thinking, “ah what are we going to do here.” And they send you a letter saying if you need this money, if not tell us and send us the money back.

 

So you then fight the battle of getting the carers in and you turn it into a reasonable pension with the Parkinson’s. But it isn’t easy and to get the money you want, it is not easy. You have a limit I think a maximum I think of about a couple of hundred pounds a week and that is about it really. You get a mobility allowance which is another small thing. If you are paying for your own pension which I am or was they still tax you. They still tax you. They know you may have X amount in the bank and it is not much but they still want to know how much you have got there and how much, because I have three tax offices and none of them talk to each other. I am dealing with one, two and the third one I get all the paperwork from but they don’t talk to each other. And you know you are running round. I started once with querying my tax forms and after about six months of phoning up and talking to them, well… do what you want. You know. There is nothing I can do about it.
 
So there is a lot of bureaucracy that you have to sort out?

Yes. The form for main payment as I say is 14 pages long and for Pete’s sake if you get this form, go to the carers or professional people and let them fill it in as it should be filled in. Don’t write down and say I’m alright today. You always put down on your form even when you go and see a doctor, for instance if you go and see a doctor or the, the registrar or whatever. Don’t say you feel great that day because most people put a face on. Go and tell them when you are ill, when it is serious, that is the time to tell them. Then they have got a true picture of you. Not like if I walked in with a happy go lucky sort of walking, staggering and sort of looked as though there wasn’t anything wrong with me. That is not it. Just express your feelings and tell them about how you are when you are really ill. And then you might get listened to a bit that more. Then you get another load of forms. But there you are.