Gaynor - Interview 15

Age at interview: 54
Age at diagnosis: 51
Brief Outline: Gaynor was diagnosed 4 and half years ago. She takes Mirapexin. Fatigue, sleep disturbance and stiffness are the main symptoms she experiences.
Background: Married, adult children, retired social worker.

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Four and a half years ago Gaynor noticed difficulty brushing her teeth and writing. Because of pain in her arm and shoulder, two GPs diagnosed frozen shoulder. However a physiotherapist recommended that she saw a GP interested in neurology. He noticed how she didn’t swing her arm when she walked and he told her he thought she had Parkinson’s Disease. After seeing a consultant she was put on a small dose of Mirapexin to see if the tremor she was now experiencing improved, which it did.


She felt it wise to tell her work colleagues at once rather than have them notice something was wrong. She found it emotional and upsetting telling others but she received overwhelming support from her friends and colleagues. She has no outward signs that she has Parkinson’s Disease, so sometimes when she tells people, she finds she has to deal with their reactions and tries to be upbeat and positive.


She gradually cut down her hours at work because of tiredness, and 6 months ago she was allowed to take early retirement. She is eligible for Incapacity Benefit. She does Tai Chi and has joined a choir and she now has time to spend more time with her friends.


She has gradually increased her dose of Mirapexin and is now on the maximum dose. She has noticed that she is much slower and more exhausted and not able to do as much housework or gardening as she used to. Her arm is sore and she feels stiff a lot of the time. She has to sleep in the day but finds it hard to sleep through the night. Still being able to drive enables her to remain independent when her husband is working.


Gaynor, and her family use humour to cope with symptoms and they carry on as normal. They don’t talk about the future, and they don’t know what it holds. Gaynor and her husband go on holidays and make the best of now. She did the Moon Walk last year, which took a lot of training but she felt fantastic.


It’s taken a while for Gaynor to accept that she has Parkinson’s Disease but she now views it as something she has got to make the best of.  She describes it ‘as friend that she’s got to know and learnt to live and walk along with.’


She suggests it is important to be open about having Parkinson’s Disease and to learn from other people with it. She advises others to be careful not to believe everything they read or hear and to educate their GP who may never have seen a case like theirs.


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

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 joined her local group with trepidation, now she is fully committed to its activities.


So at this point I’m adjusting to being retired and keeping busy, trying to catch up on friends, travelling, picking up on hobbies and generally trying to support others as well by becoming eventually involved with the local support group. Although that was something I did with trepidation because, I think you have to deal with it yourself before you can support others. And even when you think you’ve dealt with it, you know, things can happen that, you know, can make you upset.

The first time that they rang it was, the most, well it was not supportive it was condescending, you know, it was, they were, it was as if they were get, they were showing me pity rather than anything else. And that’s, that’s easy, you know, easily done, but and I suppose I was sensitive as well. But I know that, you know, the person was doing it from the best intentions but it’s difficult to get the right balance because there was some who’d been going for years who wanted a raffle and tea at this certain time. And, but gradually things are changing and we’ve had different speakers and, you know, and the nurse is now in post and she’s lovely and, and I’ve been helping to devise a pack for newly diagnosed people.


Gaynor admits that going privately is plusher but believes that the approach is changing in NHS...

The environment you go to when you go to the NHS it’s so different. I mean, you know, that’s just life isn’t it? You wait in the corridor, you know, and it’s, everybody [laughs] all the Parkies are there at once [laughs]. But I know one or two of them now so we have a bit of a chat [laughs]. I know I went to the clinic it was all plush and, and, you know, but then again, what else did he say? Yeah he said, you know, “Join the Parkinson’s Society”. He said, “You won’t be able to take anything in now”. Which is right, you know. But everything is so rushed in the NHS. You know you’ve got your few questions to ask and he answers them, and then he’s writing down your next appointment and that’s your cue to leave, you know. But I haven’t felt that I needed any more at the moment whether I will in the future. And now that, now that we’ve got [the Parkinson’s nurse] it’s a lot better and she was there last time I went to see him. So, but it is a very medical approach, inevitably. But I think there’s going to be more and more pressure from people, you know, especially with, when people go to hospital about taking their medication on time and things like that, it’s crucial and, you know, the education of nurses and junior doctors and things is, you know there’s going to be more and more of us about isn’t there?

Gaynor tried to get someone to explain the problems she had when brushing her teeth and with her...

I first suspected about four and a half years ago that something was wrong because when I was cleaning my teeth I felt I didn’t have the same control over the toothbrush and then I noticed my handwriting was getting quite poor. I thought it was because I used the computer a lot but, you know, that it wasn’t that. And my arm and my shoulder were quite painful persistently. I went to the GP several times and they said it was a frozen shoulder and it would go away, and it didn’t. And so I went to the physiotherapist and I told her that my arm didn’t feel right as well, and I think she suspected that it was something more than just the frozen shoulder, and by this time so did I because having worked with older people in my job. There was all sorts of possibilities and things going through my mind that it could’ve been. But I tried to think, ‘no that it wouldn’t happen to me.’ 
Well I went to another GP, even after seeing the physio and she said it was a frozen shoulder and if it didn’t get better they would try an injection. So another few weeks went by. Went back to the physio and she said, “Well go to this other GP who’s got an interest in neurology”. So off I went and he, within [clears throat] a couple of minutes he, you know could tell and the last thing he did was make me walk towards the door and I didn’t swing my left arm. And he had a student with him as it happened and I could hear them sort of talking to each other and he just came out and he said, “I think you’ve got Parkinson’s”. And it was such a shock even though I knew it was going to be something, I even thought it could’ve been something worse.

Gaynor is uncomfortable with being the object of pity or anger.

But when, the first time that they rang it was, the most, well it was not supportive it was condescending, you know, it was, they were, it was as if they were get, they were showing me pity rather than anything else. And that’s, that’s easy, you know, easily done, but and I suppose I was sensitive as well. But I know that, you know, the person was doing it from the best intentions but it’s difficult to get the right balance.
Sometimes I catch people’s sort of eye, there’s this sort of, pity, not pity but, anger as well, you know that, and although I don’t get angry myself and because of, you know, there’s no good saying ‘why me?’ because ‘why me’ is ‘why not me?’ [laughs] and that’s a weird thing really. It’s really hard to explain sometimes.
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