Ruth - Interview 26

Age at interview: 56

Age at diagnosis: 47

Brief Outline: Ruth was diagnosed 9 years ago. She has tremor, stiffness, difficulty sleeping and tiredness. She has to pace herself. Some days are easier to cope with than others.

Background: Married, 2 adult children, retired clerk.

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Ruth’s symptoms started with a tremor in her little finger which spread to her other fingers. She had visited her GP on several occasions but no diagnosis was made. While seeing a physiotherapist for an injury to her arm, the physiotherapist noticed the tremor in her hand and said that she would speak to Ruth’s doctor. Within a couple of weeks she had an appointment with a consultant and she was diagnosed with Parkinson’s Disease. She felt very down and depressed for the first six weeks. She suffered panic attacks. She couldn’t sleep or eat and didn’t know how she was going to cope. The Parkinson’s Disease Society contacted her six weeks later and gave her the information she needed to start to learn to live with it. 

 

Ruth feels angry about having Parkinson’s Disease and since the day she was diagnosed, she has felt that she is a different person. She recognises that she has just got to get on with it but some days are easier to cope with than others. Her family live close by which helps enormously as they encourage her to go out for walks with them and to spend time with her grandchildren. The mornings are the worst where she feels sore and stiff. There are days where she doesn’t want to get up, but her daughter encourages her and takes her out.

 

When she was first diagnosed she pictured herself in a wheelchair within a short time but nine years later this has not happened and she is still mobile. She does get tired very quickly and has to pace her self. Ruth has greater stiffness and pain now. Walking and sleeping are difficult. She is more emotional and cries more easily and she also notices that she gets angry at things more easily. But also she finds some things incredibly funny, which she wouldn’t have done before.

 

She uses hypnotherapy tapes to relax and she has tried several alternative therapies. She tries to have a massage once a month, which takes away the stiffness and makes her feel good.

 

Ruth feels self conscious about the tremor in her hand, but Ropinirole controls it well, expect when she is very tired or stressed. She also takes Sinemet and Amitriptyline.

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

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.

Ruth wants to talk about the future but the men in her family prefer to deny the possibility of her becoming more disabled.

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 ago.” You 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 it.” Whereas 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 be?” And 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 fine.” It’s as if they just can’t comprehend the fact that you might not be fine.

Ruth was scared by the prospect of having a brain scan though she was told it was just to make sure everything was ok.

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-in-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.

Ruth described the brutality of the original delivery of her diagnosis, her immediate reaction, ways in which people have been able to help and how the diagnosis affected her feeling about her life.

And it was quite brutal the way it was diagnosed. He just said, “You’ve got Parkinson’s Disease but you won’t die with it, and the tablets we can give you should cover about the next ten years. After that they start not to work so much and your symptoms will get worse.” And that was about it.

 

Really that’s how I was left, which was quite upsetting. And coming home telling my family, it was upsetting to tell them too. And, I took a, it was a good month to six weeks, I was really down and depressed. And I got a phone call from the Parkinson’s Disease Society after about the six weeks and the lady talked it over with me, my diagnosis and what it could mean for me, what it probably would mean for me. Explained that everybody with Parkinson’s is different and some people it, it escalates quite quickly and others it doesn’t. So something hit a chord with me then and I, I just thought, ‘oh well I’ve got this I’m, I just have to get on with it now. There’s not much more I can do about it’. 

 

But it, it has been a long process coming to terms with it. I mean, first of all I was very, very down and depressed. Then I was very, very angry because I just thought ‘well why should, why should it be me that gets this at my age?’ and after the, the anger has sort, it was a, a form of acceptance. Even yet after all this time though I feel quite angry about it because I just think that I stopped being the person that I was when I was, when I was forty-seven and a different person took over sort of thing. I’ve never, I’ve never felt back like myself again from that day that I got that diagnosis. I’ve, I’ve always felt someone, that I’m someone different. 

Ruth's friends and her daughter refuse to allow her to accept an invalid role.

A few friends I’ve lost. I think maybe the same that they just can’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 so.” And I say, “Oh, no I don’t know.” “Yes, you are you’re doing it.” And 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 diagnosis what, 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 walk.” And I say, “Oh no my legs are.” “No, come on we’re going.” And 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.

Ruth's depression, panic attacks and paranoia were a reaction to being diagnosed with Parkinson's disease.

So do you say you’d felt depressed?

 

Oh in the beginning very, very down yeah. Didn’t want to eat, didn’t, I couldn’t sleep I was just pacing the floor all night thinking ‘what am I going to do? How am I going to survive I’ve got Parkinson’s Disease?’ I expect, I had a feeling that everybody was, everybody knew, when I went outside I used to think ‘they know that I’ve got that that’s why they’re looking at me like that’ and I was being totally paranoid. And I wouldn’t go into shops because I took panic attacks when I went into shops and I wouldn’t travel on the bus because I took a panic attack and, I wouldn’t go away on holiday or anything, and it just got to the stage where, I, I mean fleetingly I thought you know, ‘maybe I’d be better just taking a handful of tablets and being away rather than what I’ll have to go through as, as the illness progresses’ and then I thought ‘och no that’s just being stupid because it might never, you know, get to the stage where it’s really, really bad.’ I mean in the beginning I pictured myself in a wheelchair within two or three years, and here I am nine and a half years later, you know, and, not in a wheelchair, thankfully.

 

But in the beginning I was really, really down and depressed, felt dreadful, just. And I felt like there was nowhere for me to turn, nobody to, nobody that could under, I felt that nobody could understand the illness the way that I was feeling about it, I thought ‘nobody else knows because they have not got it.’ And it wasn’t until I spoke to somebody from the Parkinson’s that, I kind of felt, “oh well there is other people that have got it and they, they’re getting on with their lives, you know.” But , I really in the beginning just had a real hard, hard time accepting it.

Ruth worked for 9 years after her diagnosis but then needed help from the PDS and her GP to persuade her employers to agree to give her medical retirement.

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 hours.” Twenty 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 them.” She says, “Put it in black and white.” And she says, “If they’re still carrying on like that.” She 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, “Oh right we want a medical report and everything.” However 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.

Ruth was helped in her decision to retire and though she feels it was the right decision, she misses things about work.

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 and my GP was, kept, I mean she was excellent, she just said to me, “Right I’ll leave it up to you to decide.” She says, “Personally I think you should give up.” But 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 the in the end that knows what the situation is.” So 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 decision.” And my daughter and I spoke about it and she said, “I don’t think you should give up work.” She says, “Because I feel maybe if you, if you give up work maybe you might regret it because once the step’s taken, that’s it you can’t go back.” And 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 who’s the, who’s 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.

Don't assume the worst,worst; everyone with Parkinson's disease has different symptoms and progression. What is happening to someone else may not happen to you.

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. 

Ruth had looked forward to going away but had had to disappoint both herself and her husband by cancelling at the last minute.

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 go.” And 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.

When Ruth's family started to telephone after her husband told them her diagnosis, she couldn't cope with their sympathy and wanted to be well.

And I had to tell my husband which was quite hard telling him, and my son, and then my husband just phoned round my family because they had all been waiting for me coming back from hospital to see what, you know, how I had got on. And that, then they all started phoning to say, “Oh, I’m really sorry and everything.” And that was just making me worse. I just felt, no I don’t want anybody’s sympathy, I just want to be well. That’s all I want is to be well. And I was okay for a couple of days because I think it probably hadn’t hit me properly and then when it did that was when I got really down and depressed.

Ruth was shocked at her GP's apparent indifference to the news of her Parkinson's disease. She brings him printouts of information from the internet.

I mean I remember going, just after I was diagnosed I remember going up to my GP to get my prescription and he says, “And what can I do for you?” And I’m saying, “Oh I’ve got Parkinson’s.” “Yes but why are you here?” And I thought, you know, ‘is this how it’s always going to be. Are they never going to know anything about it?’ which is pretty much how it has been to be honest.

 

When ropinirole, which is one of the treatments that I’m on, when ropinirole first became available for, for me to take, I went up and I asked, I said that, you know, “I would like to be put on to this because it’s a better form of treatment for me at the moment because it, it was better for you when you’ve had first been treated for Parkinson’s.” And my GP just kind of looked blankly at me. He just didn’t have a clue, knew nothing at all about the treatment or anything. Didn’t even understand really what, what it was all about, and we had to come home and run it all off from the internet and run off sheets and sheets about it. Take it up to them and eventually after about three or four weeks I got put on to the ropinirole and it’s been great ever since, you know, it’s a really good treatment, well I feel it is. I don’t suppose, I suppose like any other treatment it’ll depend on the person theirselves you know? But it’s been very good for me, it’s helped me a lot.

Ruth's tremor distressed and embarrassed her, though her medication can control it.

I think probably it controls my tremors and I mean the tremors is the one, one area where I feel really, really self-conscious about having Parkinson’s, when the tremors starts I feel it’s, then that I, everybody notices it. You know my family will say, “Och, no they don’t.” But, I feel that they do and if it’s really bad I just won’t go out at all, if it’s like that. And the Ropinirole does help to control the tremors. I mean, I have on and off periods with the medication but most of the time unless I’m very tired or very stressed my Ropinarole normally controls the tremors. So it helps, it gives me the confidence to, to go about doing things, that way.