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Rachel - Interview 39

Age at interview: 76
Age at diagnosis: 70
Brief Outline: Rachel was diagnosed 6 years ago when she was 70. She takes Madopar which allows her to function pretty normally. She is not sure whether things take longer to do is because of her age or because of her Parkinsons disease.
Background: Adult education, married 3 children.

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Rachel initially consulted a GP when she noticed what seemed to be a slowing down in her movements. She saw a young GP who had not known her before and after consulting a text book he told her she had Parkinson’s disease. Because of the way he had told he she was unwilling to believe him though she actually suspected that he was right. She then consulted her usual GP who referred her to a neurologist who confirmed the diagnosis. She has taken Madopar since that time, having been advised to stick to the lowest dose she could to control her symptoms which were mainly difficulty in getting her limbs to do what she wanted them to do. Because she had private medical insurance following the removal of a meningioma from her brain in 1993 her visits to the neurologist have been intermittent, in contrast to the usually regular attendances of NHS patients. Her relationship has been exclusively with the neurologist, there has not been a Parkinson’s disease nurse for her to consult. She has had some help from an occupational therapist who arranged for a stair rail and a contraption which slides under her mattress and provides her with a stable prop to pull on when getting out of bed. She can do most she wants to do though she finds many things difficult, and worries when gardening that she might topple over or put a foot on a plant as she tries to save herself from falling. She hasn’t felt it necessary to mention her Parkinson’s to people other than her family and is not sure whether or not they realize that she has it. She hasn’t felt inclined to join the Parkinson’s Society feeling that their literature might make grueling reading and not necessarily be relevant to her situation. She prefers not to think about the possibility of her symptoms becoming more pronounced in the future. Since her Parkinson’s disease has progressed slowly and she is 6 years older than when it was first diagnosed she feels that some of the changes she notices may be due to her age though she believes there are people of her age who are more able for instance to take long walks.

 

Rachel was given a stair rail and a contraption to help her pull herself up in bed.

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Well, we just recently what I did find was that going upstairs. Going upstairs is no problem from the physical point of view, I don't get breathless or anything like that but again this balance business, and I said to the doctor it would be lovely to have an extra handrail. Our stair, our steep staircase only has one and he said, “Oh I.” he could fix that through the occupational therapists. And very nice person came and she at once said we needed a second handrail and she would do it. And in the last month it has been done and it's wonderful, it's just what one needs. And now when I go upstairs carrying a lot of things, instead of teetering on the stairs and nearly falling off I don't because I've got a handrail both sides so that if I have something in my left hand I can, really, I mean it's much, much better, so that we have installed. And she also suggested which I didn't know what it, that this thing existed a thing called a bed lever which is a sort of handrail which is attached to your bed, a small handrail. That is very good too and I've got that. It's a metal it's about the shape of the tripod and with a wooden, flat wooden thing that goes on under your mattress and that your weight hold this rail up beside you. It doesn't take up much room and it's about two feet or eighteen inches high curved at the top and down the other side in and out and it's very helpful and it just enables you to have something to hold onto or pull on when you get in and out and it's very helpful.
 

Rachel saw how difficult it may be for a GP who does not know you well to make an accurate...

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I haven't found the GP's very helpful I have to, they. Partly because I, I don't know, it’s very difficult to know how you seem to other people. But the, the GP who knew me well has now retired. He knew that I wasn't myself, he could, he, one’s facial expression changes and he realised that I was no longer animated in the way that I used to be. And he knew, knew one very well. With a new GP, it's difficult for them, I think. I think it very difficult for them to assess what your normality is and what your circumstances are, how you live your life. It's, it’s a very difficult job, I think, for a GP who perhaps sees you five minutes every six months or more rarely if you're lucky. It's very difficult for them to tell what you were like or have the power of being like, and I don't know, especially with a thing like Parkinson’s, when you go into a situation like a doctor's surgery you, you seem to get an access of adrenalin or something which makes you behave in a perhaps a, well I just don't know whether enough is known about the disease and what it is like to have it. I think it's very difficult for doctors to assess that.
 

Rachel feels she no longer knows how to do things that had once have been second nature.

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You seem to have forgotten how to do things, and some things like opening tins with those pulls, you, you just haven't got the strength to do it. I know how, you know, of course I know how to do that but there are quite a lot of household jobs, which I find difficult to have the strength to do. I find it difficult to put on a coat and that's awkward if you're out on your own, if you go to something on your own and you want, it's hot inside and you want, if you take your coat off and then when it's time to go you can't put it on again and that's a nuisance. That's, that’s always difficult, I don't know that, that's something to do with control of the arms or strength in the, strength in the arms I think.  

 

What about writing?

 

Well I did notice when, before I had the Madopar my writing got very, very small  which it never had been, it had always been rather big and scrawly and now my writing is just bad. It's, it's not always small, but and I, I tell myself to do it big and decently and but it, I don't control it the way I would like to control it, and things like sewing are difficult.  

 

Difficult or impossible?

 

Well, I, I hardly, I used to do not very fine embroidery but I used to do, well, you know, wool gros point and I think I would find that impossible, well not quite impossible but it would, it wouldn't work. I mean, I can still sew on a button if I absolutely have to and do.
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