Now and the future

Many people when they first learn that they have Parkinson’s disease have little idea how the condition will apply to them. Most realised that each person was so different that no accurate predictions for the future were possible.

Though his symptoms had barely progressed since his diagnosis 18 months earlier, Rafa couldn’t…

Age at interview 51

Gender Male

Age at diagnosis 49

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From time to time I think the greatest the greatest worry you might have is that in two or three or five years time you cannot do the things you enjoy doing.Or it’s the uncertainty of it, the unknowingness which we all are aware of anyway.You can drop dead anytime, you can be hit by a bus or acute diseases or have an accident.We kind of all accept that but knowing that this clock ticking, or potential clock ticking, that will affect your movement or your life, your children’s experiences, your partner’s experiences things like that.That’s from time to time worrying.

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Rafa found that he could switch off from this kind of concern a lot of the time. But he was fortunate. Most people cannot really forget that they have Parkinson’s disease even though their symptoms may be well controlled.

Geraldine would love a day off from having Parkinsons disease but knows it is not possible.

Age at interview 60

Gender Female

Age at diagnosis 42

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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.

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Ann realises that she no longer thinks about her Parkinsons disease when she wakes up each…

Age at interview 68

Gender Male

Age at diagnosis 66

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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.

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As his symptoms become more difficult to treat Alun has found it hard not to give in to…

Age at interview 58

Gender Male

Age at diagnosis 49

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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.

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Several people had felt fear and depression during the first year after diagnosis as the future seemed so uncertain. Some, like Karen could come to some sort of acceptance that they had the disease and they decided to manage as best they could.

Karen has learnt that worrying about the future can stop you getting on and doing what you can…

Age at interview 45

Gender Female

Age at diagnosis 39

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Yes I think, I think you start with denial and I think you, as I’ve said you don’t ever actually accept you’ve got the disease, but fear and anxiety of the future is very much something that goes on in your mind. Every morning you tend to wake up with the thoughts of, you know, what if this happens’ and when might this might happen?’ But you can’t worry about that, you’ve got to just let the disease take its course. We all know that the disease is going to progress. We all know that I will become worse. We all know that gradually I won’t be able to do the things that I can do now.

But worrying about what’s going to happen in the future before it happens, just stops you doing the things you want to do. And I do get frightened, I can’t deny it. I do get very upset. I do get very angry, why me? But at the end of the day nobody’s going to take this disease away from me. I can either curl up in a ball and have no life, or I can get out there and just get on with it and enjoy the life as best I can, which is what I’m determined to do for the sake of myself but also for the family and friends that are around me.

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But others were angry at the unfairness of it all, and were jealous of people who didn’t have this problem.

Fiona feels guilty about feeling angry about her husbands PD but admits this helps her to cope…

Age at interview 46

Gender Female

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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.

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Gaynor has experienced disbelief and self pity and realises she is sometimes jealous of her able…

Age at interview 54

Gender Female

Age at diagnosis 51

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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.

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Gaynor is not prepared to accept, as she feels some people expect her to, that what has happened to her should be looked on as a ‘gift’. What she does accept, like others we interviewed, is that if you’ve got it, that is what you have got, and there is no getting away from it, so life has to go on. Of course there are lingering thoughts, as Fred says, about where it is all going to end.

Fred wishes it was possible to know more about what is in store for him.

Age at interview 70

Gender Male

Age at diagnosis 65

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Youhave no concept what you’re letting yourself in for, you have no concept of the endgame.The books talk about the condition, and how to handle the condition.And as such they’re very good.But they don’t talk about the, the end of the road.And that’s one thing which does worry me increasingly.How, what happens?What is the final prognostication?Death comes to us all, but not, I’m sure Parkinson’s doesn’t kill you.But what will your state be in about five years’ time? That’s what I want to know.I don’t think anybody can answer that question, but it’s something which preoccupies me.

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Several people were sad that they might not be able to enjoy and care for future grandchildren, or that their rigid facial expression might be a disadvantage in their relationship with their grandchildren. Ruth’s grandchildren have known about her Parkinson’s disease since it was first diagnosed. They take an interest in it and have been read a book called ‘My Gran has Parkinson’s’ but she still dreads what it will be like for them in the future.

Ruth wishes she could feel confident that her worst fears will not be realised.

Age at interview 56

Gender Female

Age at diagnosis 47

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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.

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Wendy feels it is reasonable to be optimistic.

Age at interview 62

Gender Female

Age at diagnosis 57

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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.

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Many strategies were suggested to cope with these inevitably dark thoughts. Some people believed that they were naturally positive thinkers and chose not to brood on what might be in store for them. Natalia doesn’t spend her time worrying that she might be in a wheelchair in two years’ time. Instead she feels lucky that her symptoms haven’t progressed too quickly.

David has realised that worrying doesnt help.

Age at interview 54

Gender Male

Age at diagnosis 48

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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.

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Tom realised it was more important to overcome the mental reaction to having Parkinsons than to…

Age at interview 40

Gender Male

Age at diagnosis 27

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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.

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Many people lived one day at a time and tried to live their life as fully as they can. Some people threw themselves into new activities. Some were things which stretched their physical capacities – Tom’s walks for charity, Judie’s sailing and abseiling, Alan’s dancing. Other people extended their social life by becoming involved in activities connected with their local Parkinson’s UK group. Or they revived old friendships and interests. Several people described how much the support of their families and friends had helped them.

Bob has learnt to maintain a positive attitude because that way there is still so much he can do…

Age at interview 55

Gender Male

Age at diagnosis 51

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In the last five years, I’ve gone through a lot of, the biggest thing I’ve had to deal with apart from more physical problems that I have to think about. But the main thing is losing my positive attitude. Really not thinking of myself in the right way and thinking the wrong things. Getting into a situation where I came to terms with the condition and saw it just as that, me with a condition that I can deal with. So I that’s the only thing that I’ve really had to deal with. There are, I was never built for speed anyway, so that doesn’t notice so much with me. So I do things at my own pace. If I can do things I’ll do them and if I can’t I’ll do them tomorrow or, but I think it’s important not to give up on things. it’s important with things like hobbies and being positive. And getting out not, not just sort of staying at home. But to do, just do things at your own pace.

Maybe start planning to do different things, things like reading. Some things like large, large newspapers are difficult to handle but with things like books, reading is a good therapy. So there’s lots of things that you can, swimming is very good for you as well, you know, you’re not going to be able to perhaps go running like you used to and things like that. But there are lots of other things you can do.

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Several people described how it helped to be able to laugh at themselves. Karen said she and her family were always laughing. People who had got stuck in their baths could later turn these episodes into funny stories. They could laugh about times when they had frozen in unsuitable places, disasters with eating or at people’s often unkind interpretations of their behaviour. Judie was on a Parkinson’s course when she found herself included in a sail round the Isle of Wight:

When Judie got stuck getting out of a boat she found it funny to be seen in a compromising position.

Age at interview 62

Gender Female

Age at diagnosis 52

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Well when I could get off the boat we had a very funny incident on the Saturday morning. We were in the dock and the showers are on the land. So my friend and I were up first. There were six crew members. Only Jane and I knew each other. The other four didn’t know each other or know us, and the Captain.

We got off the boat on the evening and come back and they’d found some orange boxes for me to climb up because I couldn’t get the height.So I’d got these orange boxes to get up and on the boat and off the boat with. But when we got up in the morning the quayside had all been cleaned and all these boxes had gone. So I was sitting on the deck and Jane said, Well I don’t know how I’m going to get you offSo then she had an idea. She decided that if she pulled me through with my feet that I would get through this rope and she could guide my feet to the ground and gradually bring me through.Well if I’d have been a thirty-two bust that would have been alright but thirty-eight didn’t go under the rope so I lay there in this peculiar position. Half off and half on the yacht and we were laughing so much that one of the male crew members came up on boat to say, What on earth’s going onAnd Jane said to him, I’ve got her stuckAnd she said, Oh I wish I’d got a camera And Jane had got a camera so they took this picture of me stuck under the rope and he pulled me off and he said, I’d never touched a lady that I only met last night in so many intimate places But he said, Go and have your shower and I’ll get you back on again

But when we went over to the Isle of Wight they actually backed the boat in so that it was easy for me to get off. But it caused a bit of fun.

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There were some practical considerations. Sharon knew that she would need to live somewhere without stairs and where she would not feel isolated.

Nicolas has been looking into his pension rights.

Age at interview 47

Gender Male

Age at diagnosis 44

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If I went back a couple of years I was quite bullish about things because I wasn’t too affected. But I feel things are certainly progressing, getting worse that is. So I’m not sure what the future means.Certainly works important to me at the moment. I’m not sure how long I’ll be able to continue with that.I think that’s the most important thing.So things like financial support are going to be important. So applying to the Department of Work and Pensions for benefit and that sort of thing will become a priority, I would think. I’ve already got a limited amount of support from the Department of Work and Pensions, as I say, but I’ll have to explore other things. I’m fortunate enough to have some health insurance so that would cover some of my financial conditions should I stop work, which is good.

With the Parkinson’s Disease Society booklets it says a lot of advice about what to do and what to apply for, which is great. So as I say, with the medical insurance I think I’ve got things covered such that the financial side will be fine.But I dare say things like care and support will be important and at the moment I haven’t really addressed that.

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Some people felt isolated because they thought people got tired of hearing about their fears and concerns. Penny feels that Parkinson’s disease was partly responsible for the breakdown of her marriage and that it will make it difficult to start a new relationship. She joined a web forum for a helpful and supportive Parkinson’s community, and finds it easier to discuss some of her fears and grievances with people she has not met but with whom she has so much in common. She believes her friends think she is too involved in her ‘new hobby,’ Parkinson’s disease. Geraldine realises that people could become bored with talk about Parkinson’s disease since her partner has discouraged her from responding too enthusiastically to the apparent interest of his business colleagues.

Ruth wants to talk about the future but the men in her family prefer to deny the possibility of…

Age at interview 56

Gender Female

Age at diagnosis 47

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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.

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When people are thinking about their future they have to think about who will be able to look after them. It is easier not to think about it, but the thought is there.

Ann is not sure how well her husband will manage if he has to care for her and she doesnt want…

Age at interview 68

Gender Male

Age at diagnosis 66

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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.

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Penny who is divorced and was diagnosed only two years ago worries about how much help she can…

Age at interview 53

Gender Female

Age at diagnosis 51

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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.

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Caring, care and carers

Parkinson's disease is very variable and may progress very slowly. When first diagnosed most people worry about future incapacity and who will be able to...