A person with Parkinson’s is fully alive but entombed, you know, and sometimes Bob looks at me and he says he can see me in there, you know, just wanting to get out, wanting to break free.Well, just have a day off now and again, you know.I’d even bargain that if I could.

But you don’t have a day off.

It won’t let you, you know, it isn’t that.

Even when you get your tablets exactly right or.

No, because you’rehaving to concentrate on remembering to get the tablets exactly right, you know.Because I can never just put down my bag, forget my tablets and go somewhere, you know. Always before I go out the house I have to put these tablets, water, food to eat in between times because they don’t take properly if I don’t.

I wondered if there would ever be a time where I would wake up in the morning and not immediately think, I’ve got Parkinson’sThat time’s come.I don’t think like that now.But those first few months it’s there all the time.And this is the, the problem in the first year, that you can get extremely depressed just learning to live with it, learning to know that that’s what you’ve got.You can’t take it away. You’ve got to live with it and you’ve got to live through it, and if possible you’ve got to do the best you can with it.

it’s slowly progressed over the years but it’s been this last year that has been the most difficult. When I changed drugs, from one sort of Parkinson’s drug to another and stopped taking the anti-depressants, I really went downhill and I haven’t actually recovered since.The walking is bad. I sometimes get more depressed, in fact in January when I was feeling very low I was lying on the carpet at night, unable to get comfortable and I just felt like dying. So I went to the doctor and got some happy pills and I’m okay again now. I don’t have those thoughts any more, but it was a bad time for me.

Yeah in terms of emotions I say, I do feel angry about it and I feel guilty even admitting that, but I feel I can look at that and I, it doesn’t, I don’t feel like it’s making me bitter about it because I feel, that it’s something I can look at and think right, we can cope with this.There’s a lot of help and support out there’, and my husband’s you know, determined to, to get through this.We’ve got a very good family and friends.

I do feel guilty sometimes that, if I don’t have the patience, sometimes if, if, you know, with he, my husband’s struggling with something, I’d say nine times out of ten that I have got the patience there but sometimes I’m working full time I get tired.But, you know, if ever that happens and it’s not very often we always, you know, it, it’s not a problem, it’s something that we, we get through together and I think he, he understands it’s, it’s not easy for me sometimes.

And I suppose sometimes as well, with the children I think, you know, I, try not to sort of put any burden onto them but sometimes I want to say, Come on, you know, we need to pull together and do this, you know, get through this for Dad as a, as a family But then by the same token they’re still children, and they, they’ve got, you know, demands from school and, you know, they, they’ve got, they’re going through difficult things as well themselves. So it’s, sometimes it’s, it’s hard, you know, as a family to, to get through sometimes.

Well disbelief, you know. I think I’ve gone through the, I’ve had self-pity in the sense of, of thinking of, and jealousy of some of my friends perhaps because they’re well but that’s, you know there’s no use in feeling like that because it’s, you know, I haven’t, I haven’t got a choice but to carry on really.And there becomes a sort of resolution that, you know, okay, somebody did say to me, You’re doing so well, it’s been a gift to you.Well that’s a load of C.R.A.P.as far as I’m concerned because it’s not been a gift. It’s been a, you know, the opposite really but I see what she meant, you know.

Whatever life throws at you, you just think ‘well brush yourself down and get on with it’ really, because I think, you know that’s how I was brought up and that’s, and that’s how I’ll carry on. You just don’t know how you’re going to cope with things really but I think because I got such a, you know, such a happy, had a happy marriage, you know, thirty-four years I think I’ve trained him pretty well in that. You know, he knows, I know how he thinks he knows how I think. I’ve coped as well as I can do really but one never knows.

I’m very lucky in that my symptoms are quite small at the moment.My arms don’t swing when I walk.I have problems with my balance. I have various different internal problems. But I can still speak. I can still walk.I can still with effort throw a dinner party. And I enjoy my grandchildren enormously.They wear me out but they wear everyone out.So that’s perfectly normal.The future no one knows but it is much more positive now than it was ten years ago.So I have everything to look forward to I think.

I’ve read a lot about Parkinson’s and all the different symptoms that there is and the different treatments there are. There’s one thing I have learned in that that is that worry doesn’t help any of them and doesn’t make any of them any better or stop them coming.So really I know it sounds it’s probably silly to say but worrying about it is a complete and utter waste of your energy. You… it’s going to be what it’s going to be and you’ve just got to find a way to work around it.To live with it. I have Parkinson’s disease.Parkinson’s disease doesn’t have me.It doesn’t rule I rule it, it doesn’t rule my life.I take the decisions not the disease.

For a while after that I lived in denial and, not for very long for probably about three months or so and tried not to contemplate it too much and then, and then I decided that actually probably that was the wrong way because I had some incredible friends, I had amazing support from family and friends, and, I decided that rather than lie back and, and hide something that was becoming increasingly visible as a physical illness which, which it obviously is,I would well try and embrace it, try and sort of work with it, try and fight it.

How can you work with it and fight it I don’t know, but that’s kind of, that’s kind of kind of what it was. So rather than live in this sort of, because at the beginning I think a lot of people live in this sort of.. in a sort of tragedy of a perceived future which might never have ever come across, might ever never materialise. it’s.. people so often think, you know, wow I’ve got Parkinson’s that’s’ and actually it doesn’t affect them too badly it’s only a mental, it affects you mentally to begin with. it’s not the physical challenge so much, and I think if you’re diagnosed early enough you can, you can perhaps overcome the mental side before the physical side really, really gets too bad. And if you can get over the mental side and if you can accept, accept Parkinson’s for what it is and accept that you have it then the mental battle, you can beat the mental battle with Parkinson’s and then the physical battle you may lose eventually but, but I know which battle I’d rather win. The, the mental battle’s far more important than the physical one, and, and hopefully that’s what I’ve, what I’ve achieved.

It worries me, a bit.My husband is not domesticated.He’s never, his job has come first in his life, before everything. I’m having to try and teach him how to cook, occasionally. He’s having to come and chop vegetables for me at times. He’s having to do odd jobs that, he’s having to learn how to iron.I feel that there might be a time when I can’t do some of these things and he might have to take over.And I don’t think he understands.If I say, I’m achin he’ll say, Oh, what’s that withAnd I’ll say, Well, it’s just part of it.My body’s aching, my shoulders are aching I’m glad that I’ve got my family near me, but I don’t want to rely upon them. They’ve got their own lives to lead.

I’m hoping that I’ll just, I can go on as long as possible as fit and as well as I am.It is progressing. I know that it is.In two years it has, it has definitely progressed.But then I’ve got another two years and if it’s only progressed the same amount I’ll still be fine. But I’m slowly telling my husband that it might be, that he might have to help more.But I don’t want to think too much about it.

So I think , he’s, he doesn’t want me getting into a pattern of dependency for him, so we can have a bit, we, so we do have a bit of conflict because I have an expectation that anyway as he’s a young man living at home, I don’t see why he can’t do such and such a job, but he sees it as well that’ll be, you know, me setting up an expectation that he’s there to do stuff and I’ve got to find my, my own solutions. So I think it’s been a whole level of, distress for him to deal withand, you know, I mean he’s, he’s very supportive in his own way but, you know, you just don’t want your children to have to be dealing with that, it’s just not fair really.