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Judie - Interview 20

Age at interview: 62
Age at diagnosis: 52
Brief Outline: Although having Parkinson's meant that Judie had to give up work, she has found herself doing all sorts of adventurous things she might never have done otherwise.
Background: Married, Adult children, retired training advisor.

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When Judie first noticed some stiffness in one arm she put it down to a succession of recent stressful events in her life. She suspects her GP guessed the nature of the problem as he arranged for referral to a neurologist. When she found this was going to take 5 months she decided to go privately. He told her the diagnosis but she got little helpful advice at that time. But in the 9 years since then she is not much worse off than she was. She decided to inform her work early on and was shocked to find that rather than special consideration she was put in a situation where eventually her only option was to leave.

 

At first she didn’t want to tell friends and family especially her mother. But when she found the expert patients programme it gave her confidence, especially when she was asked to become a tutor. She enjoys having a circle of friends who also have PD and is involved in many social and fundraising activities with them including sailing and absailing. Some of her old friends really understand her difficulties while others really don’t. Judie’s husband  has had to take on some domestic responsibilities he had never encountered before her illness. She has a good relationship with her grandchildren who have some understanding of her condition.

 

Her symptoms have not progressed much. She has a tendency to freeze which is worse if she is in a demanding situation and her walking is very slow. She takes the medication she is prescribed and doesn’t spend much time worrying about possible side effects.

 

While she is much worse off financially than when she was working and some benefits are not available for someone with a working husband, she enjoys the benefits she can get like concessions on trains and in cinemas and theatres.

 

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

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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 off.” So 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 on?” And Jane said to him, “I’ve got her stuck.” And 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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Since attending an Expert Patients' course Judie has become a tutor.

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And soon after I was diagnosed, I don’t know how I knew about it, a course for the Expert Patient Programme, and I went on this course locally at a local hospital, up the local hospice actually. And , it was good for me, it was sort of about learning to manage your symptoms and , it brought you into contact with other people with other conditions, not that it wasn’t all Parkinson’s. But you all had a common feeling really, you experience the same emotions. Have similar kinds of problems to encounter. And at the end of the six weeks, my tutors asked me if I’d like to train to be a tutor myself, which I did. And that gave me so much more confidence. Because I think being diagnosed you lose a lot of confidence. I certainly did.

 

And I went on this course for five days and I’ve been a tutor, Expert Patient Programme ever since and I’ve made a lot of friends and hopefully helped a lot of people. I like to think so. It gives me a buzz if I have. And we’ve also got a little group of Parkinson’s people that have come together because of our Parkinson Nurse and we meet up about every six weeks or so, either at my house or we go out for a meal or we do something. We have ten minutes talking about our problems and then we try to act normal.

 

Judie described the unfeeling attitude of the neurologist she had gone to see privately and...

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It was almost as if, oh I’ve diagnosed what this person’s got. I’ll tell her and that’ll be it. He didn’t give any offer of any support. He just said that he’d make me an appointment at the hospital and I would go along and see him again and issued me some pills. And I think, I think you need to know some support that you can go to. I mean I stayed awake that night and I did think to myself there must be a support group somewhere. But the support I got [laughs] was not the best kind at that particular time. But the course that I went on was fantastic, and I think they need, all medical staff need to have booklets of something to give you that explains what it is. I mean, he told me that my condition was going to get worse but I didn’t know what it was going to be like. I didn’t know whether I wasn’t going to walk or, move or whatever. I just didn’t know. I was left in the air, and it was my friends and that, that had got information together. And but it, we hadn’t got the internet at that time and, there’s a lot of information available now for people that are diagnosed with it. And I think, over the last nine years that’s improved an awful lot.
 
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Judie did not hesitate to inform her employers but their reaction was not at all what she hoped...

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It was very difficult. I don’t know how to tell you this bit really. It’s, it is quite difficult to talk about that time because I loved my job. I’d been doing it for fourteen years and I made my superiors know that what my problem was two days after I’d been diagnosed. And remember I didn’t tell my family until that but I thought that I ought to tell them and say that I may need some extra help in order to do my job because a lot of my job was driving as well. And, it was almost like I’d passed my sell by date when I told them that. I said that I would need extra help. All I got was extra work and the pressure of that was so intense that my doctor recommended that I stayed off work and he put stress related. I didn’t know people could suffer from stress like that. But it was an awful time. And I’d rather not talk about it too much because it sort of brings the heartache back up. I didn’t need that on top of the condition that I’d got, and I would like to have thought most employers are more sympathetic, rather than think that you’ve passed your sell by date. But that’s how it left me feeling [sighs], and it’s best forgotten.

 

Be active and do what you can when you can.

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Live for today and do what you can while you can. I don’t want to be sitting in my rocking chair when I’m eighty-odd if I get to that age, but, I don’t want to be sitting there thinking, ‘I wish I’d have done that. I’m sure I was able to do it and I didn’t give myself the opportunity.’ Don’t do that. If you want to do something, do it today. Make arrangements today so that you’ve got something to plan for and think about that, other than yourself, because again I think you can make yourself into an invalid by continually thinking about how many pills you take and ‘oh dear.’ You can bring yourself down and it is a job to keep up but if you don’t help yourself no-one else is going to help you.
 
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Judie found that her disabled person's railcard, did not just cut the cost of travel but helped...

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Well you can buy a railcard, disabled person’s railcard and you get, I think it’s half price each. My friend takes me down to London. We’ve been to the Parkinson’s Carol Service two, two Christmases now and various other events that they’ve had on in London. And it’s wonderful to go by train. If you go in your wheelchair and make the rail company aware that you’re going and what times you’re going they are absolutely brilliant. The first time I tried it was  two years ago when we went to the Carol Service. And we got on at Northampton and we were going to Euston and the guard was there to meet us. They knew which carriage we were going in and we were, planned to be back for about twenty past ten at night and, no half past ten. And we got to the station at twenty past ten and this gentleman jumped out from behind a post and he said, “You must be my two ladies for Northampton. I’ll take you up.” And he took us up, made us a cup of coffee, and he said, “I’ll come and fetch you when the train comes into the platform and put you in the carriage.” And, British Rail are criticised but they are good if you, if you tell them. If you don’t tell them you can’t expect the help. But they were very good. 

 
And the pictures, cinemas you can go to, you can get a card from the cinema and they will give you  a reduction and theatre will give you a reduction for, I think your carer goes free. Because on a hospital stay last year my son had bought me tickets to go and see Pam Ayres for my birthday and I was in hospital, coming to the 10th day, so I was recovering and I jokingly asked the doctor if they gave pass outs at the hospital because I wanted to go there and he said, “I’ll go and ask the physios, see what they say about it.” And he came back and he said, “Yes, you can go at seven and you’ve got to be back by quarter past ten.” So they provided a wheelchair, my daughter-in-law got a taxi that carried a wheelchair and we went to the cinema. But my son had had to change the tickets and he got a refund for one of the tickets. So we could go to the cinema again, to the theatre again. But how amazing, a hospital giving you a pass out to go to the theatre? That was, that was really good.

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