I mean that’s nine years that, that I worked with, with the diagnosis. And, it was a big decision to make. I struggled with it for a few months andmy GP was, kept, I mean she was excellent, she just said to me, Right I’ll leave it up to you to decideShe says, Personally I think you should give upBut she says, I’m going to leave it up to you to make the decision because ultimately nobody knows how you feel. But it’s, you know, you’re the one in thein the end that knows what the situation isSo I spoke about it with my husband, we talked it over, and he again said, Oh well I’ll leave it up to you, we’ll see how you, you know, you make the decisionAnd my daughter and I spoke about it and she said, I don’t think you should give up workShe says, Because I feel maybe if you, if you give up work maybe you might regret it because once the steps taken, that’s it you can’t go backAnd I did find it quite difficult to come to the decision.

I miss the people that I worked beside and I miss like, just the banter that we had in, you know, sitting sometimes in the canteen and somebody would say something and the whole place would erupt. I miss all that kind of side of it, and we are a bit worse off financially, but nothing that I can’t cope with. But then I think about people where it’s maybe the man that has it whos the, whos the main breadwinner and that, you know, I think oh what a shame I’m glad that I’m not in that position’ because I just don’t know how would I cope that way. But, it’s not too bad for us.

I would say probably not to jump to the conclusion that you’re going to be really bad because everybody’s case of PD is different. Although it’s the same illness, they say there’s no two people the same with PD.So I would say probably not to think the worst like I did in the beginning. Just try and be positive because I think the more positive you are about it the less stressed you feel and the less stressed you feel, the less your symptoms are.

Definitely mine anyway, I know when I’m really stressed my symptoms are really, really bad.So I would say try to be positive and keep calm.I know it’s easy to say and not easy to do when you’re hit with something like that.But I mean I suppose in the beginning you always think of the worst case scenario and it’s not always like that, you know.I didn’t think I’d be this good nearly ten years later.

Last year we had got a wee towing caravan and, it worked out okay last year whenever we went away, I, I was fine. This year we were gonna go away a fortnight ago and we were going right till, up until the morning we were, we had planned to go and I just felt really terrible that morning. And I knew there would be no point in me going away because I knew I would have to come home again because I just felt bad, really bad, really down, very painful, very stressed. And I just thought, no it’s not, it’s not worth it. I just, I didn’t want to go anywhere, so my husband and I ended up really kind of falling out because he had taken time off his work for us to go away and he had, you know, got everything ready and just at the last minute I just said, Look I really can’t goAnd he was saying, Oh, just come you’ll be fine But I, I know myself that I wouldn’t be if I went. I know there’s no point in going when I feel like that, because I would just have to come back.

A few friends I’ve lost.I think maybe the same that they justcan’t cope with somebody not being as well as they are, you know. People that I, I’m saying friends’ although they, my daughter will say that they haven’t been real friends if, if, you know, if you’ve lost. Others have been great.I’ve got two in particular who I go out with and they push me, you know, they’ll say, Oh come on we’re going to do so and soAnd I say, Oh, no I don’t knowYes, you are you’re doing itAnd they’re good because they make me do things that I might be apprehensive about doing. But others I, maybe three or four other friends I’ve kind of lost over the time. And I know myself it’s because of the Parkinson’s because they feel uncomfortable about it and that that’s been hard to come to terms with, because you think that you know somebody, you know, you think you know a person inside out and it turns out you don’t at all. I mean if somebody had have said to me before the diagnosiswhat, what do you, how do you think they’ll react?I would never have said that they would have done, you know, just sort of literally walked away from me but then I suppose you’re, that way you do learn what true friendship is.

Mmm… and the ones that push you to do things what sort of things do they encourage you to do?

They will encourage me to eat out and to go like, in a few weeks I’m going to see Elton John in Perth, you know.They encourage me to do things like that.

They, want me to go on a shopping cruise with them over to Bruges, you know. You know, just things like I personally myself I wouldn’t do. But because they’re pushing me to do it I think och aye, I’ll give it a bash anyway. I think probably becauseI feel safe with them now, because I know that, you know, they accept the illness and they accept me how I am now. So there’s no problem with it and the more relaxed I feel about doing things, the more I’ll do, but when I’m really uptight about something I just won’t do it. So when I’m with them I’ll go for things that I normally wouldn’t, I wouldn’t go for by myself. it’s pretty much the same way that, that I am with my daughter, you know, she makes me, she’ll say, Right we’re going for a walkAnd I say, Oh no my legs areNo, come on we’re goingAnd she kind of pushes me, but I know that it’s all done with the best intentions so it makes me think, oh well, you know, for their sake I’ll, I’ll try and do that. So it’s quite good.

Just… The symptoms of Parkinson’s.. yes, because they were starting to affect me at work and I always said that when it did affect me at work that I would stop.My work was, they were okay I wouldn’t say they were immensely understanding but they were okay.I mean at one time the PDS Welfare Officer was going to phone them and have a word with them because I was on what’s called a rolling contract, which is literally they can give me any hours to work. And when the place got busy over like Christmas and the Summer holidays they were, kept giving me more and more hours to do and I was saying, Look I’m not capable of doing more hoursTwenty hours a week was all I wanted and that was enough for me.I really didn’t want to do any more than that because I just found it too exhausting, and the, they were piling on the hours and piling them on and I phoned Gina, the Welfare Officer for the PDS and told her what the situation was and she says, Well look we’ll do a letter to themShe says, Put it in black and whiteAnd she says, If they’re still carrying on like thatShe says, I’ll come and speak to them

However once I, I done the letter and my GP, I went and spoke to her about it and she put a letter in for, for me too, and my work was quite bolshy they were saying, Ohright we want a medical report and everythingHowever at the end of it, my doctor wrote a very short medical report and charged them about forty pound for it. So they never asked me for anything again after that. That was the end of that, so that worked out quite well.

I try and get him to talk about it but he, no he won’t.He’ll say things like, he’s a taxi driver and he’ll say things like, I had a man in my taxi that was saying that a neighbour of his has got Parkinson’s and he’s not any worse today than he was twenty years agoYou know he’ll say things like that, but he won’t talk about how, how it might pan out for me. He just doesn’t talk about that at all.And my son’s the same, he just said, don’t mention itWhereas my daughter she’s the opposite she’ll say, you know, How do you think you’ll cope with that or how do you think that’ll beAnd I don’t know what I’d do if I didnae have her because the men just, my brother’s the same funnily enough he just never, Oh you’ll be fine. Oh don’t, you know, don’t even think about anything like that because you’ll be fineit’s as if they just can’t comprehend the fact that you might not be fine.

I was told I would have to go and have a brain scan just to make sure that everything was okay. So I had that and that came back fine. That was alright. I was a bit frightened really at first, mainly because I didn’t know what it involved and nobody, nobody told me. And I didn’t know, oh no my brother-law had had one, and I asked him about it and he tried to explain it in the best he could. So I had a rough idea before I went. But it was a bit scary because you, you know, I was thinking oh a brain scan this is really serious stuff this. But, when I actually got there and I had it that it was okay, it was fine, and the technicians that, that did it and that were really nice and explained it step-by-step as they went along, what it would involve and why I was having it and that. But that bit was okay I didn’t mind that so much.

I wish I was a wee bit clairvoyant and I could tell just, you know, what I was going to be like, because the thought of being like a vegetable in a wheelchair, I just think no I’d rather not be here than be like that’ you know? It scares me as well when I think, I’ve read quite a lot of people lose their face, facial expression and they’re, no because like my grandchildren are always saying, Granny’s always happy, granny’s always smiling And I think well what about if I can’t smile? You know, what will they think then?’ And the thought of that really all scares me rigid, you know. How I’m going to be in say five years, ten years? How will I be? And sometimes I think, well if I’m going to be really bad I’d rather just not be here than be really bad and not being able to move and, not being able to do anything for myself. And not even being able to go to the toilet yourself and stuff like that. That just scares me the thought of that.