Anna - Interview 29

Brief Outline:

Her partner was diagnosed with PD 18 months ago. So far he doesn't need medication and they have told very few people about the diagnosis

Background:

Her partner was diagnosed with PD 18 months ago. So far he doesn't need medication and they have told very few people about the diagnosis

More about me...

When Anna’s partner first consulted a neurologist about symptoms he had been having when running he did not tell her about it. When soon after he told her the outcome of the consultation she understood his reasons having herself undergone tests for a potentially serious condition without telling him beforehand. Having decided not to tell any but a very few friends and relatives, mainly to protect their teenage children who they feel do not need to be burdened with this knowledge at this point, Anna has some difficulty not being able to be open about  her concerns both with her partner and friends.

Anna had been concerned at Rafa's apparent lack of responsiveness as well as other symptoms which she had noticed but not been able to explain.

I now notice things about how he does things, which I now can, know to interpret as being symptoms of early Parkinson’s. The way he, sometimes the way he walks. I had commented to him for years about the way he was holding his right arm and kind of relatively the way that that doesn’t, isn’t working in the same way as his left arm. His handwriting is completely impossible to read most of the time now. And there was times when facially he wasn’t responding to things, which I had often assumed, as you sometimes do in a busy life with each other, was a lack of interest or distraction or, you know, sort of mentally being somewhere else, worrying about something else or, or whatever. Which I now sometimes think is maybe a kind of reflection of, of, you know, one of his early symptoms, and it was certainly one of the ones that the neurologist commented on the very first time that he saw, saw him. So in some ways that kind of thing is, in, in some ways it’s quite good to know about those sorts of things because you can interpret the way somebody doesn’t react to something or, or whatever in the light of the diagnosis.

When Rafa's Parkinson's disease was diagnosed Anna realised that everything about their future had become uncertain.

I became really sort of anxious about what the future would hold and what the implications would be of suddenly being thrown into a situation where you had, you know, a partner needing potentially a lot of support and at the same time feeling a lot of extra pressure to be the person who, sort of into the future would be the financial provider. Because I think I’d always operated with an assumption that we would probably both be working for another ten to fifteen years and there would be all kinds of things that might just sort themselves out in that time. I mean I know that that’s a silly perspective to have on life, because I’ve had the misfortune to lose close family members in, young in their lives, and I know that these things can change overnight. You can go from thinking that everything is fairly hunky-dory and reasonably, predictable to having your life, you know, thrown, thrown into the air.

Anna felt she could no longer look forward to the freedom she had anticipated when their parenting responsibilities became less pressing.

I mean I think when you’re both busy working and you have children and things like that, you assume that there might be a time a bit further down the line when you’ll get a chance to reconnect and do a lot of the things that you both enjoy doing together. And we’re both quite active people and I had assumed that we would be able to, you know, go off on lovely walking holidays in northern Spain or those kinds of things which have been difficult to do whilst, whilst having kids and wanting to do things that all of us would enjoy rather than just the two of us would enjoy. So I felt quite a long period of feeling very thrown by feeling that all of that had been taken away. And one of the ways that I’d dealt with some of the stresses of the uncertainty around the, the area of work that I’m in, you operate within a, a reasonable amount of certainty over a period of time, and then funding gets reviewed and everything is very uncertain for, for a while. And the way that I’d always dealt with that is by thinking, “If it all went belly up at, the next time funding was reviewed, then I’d write the novel I’d always been writing, wanting to write.” And of course in amongst that is the assumption that there is somefinancial security sort of there in order for you to be able to do those kinds of things. 

 

So there’s all kinds of visions of the future that you don’t even realise you’re holding in your head, which, I suddenly became very conscious of feeling that actually I had, I’d built up quite strong impressions of what I would like to happen in the future and the luxuries that I was looking forward to. I don’t mean luxuries in any kind of material sense, but luxuries in the terms of the, just the things that you wanted to do together and share together. And I felt really thrown and isolated about being, as I felt, sort of propelled towards a caring role, which I had thought might be part of my life perhaps fifteen or twenty or twenty-five years down the line, and the sort of things that I’d kind of anticipated might affect my relationship with my parents in the very immediate term but not with my partner.

Anna would have liked to be able to discuss her concerns but was reticent about approaching their GP.

So I spent a lot of time kind of worrying about, “What would he be like, what would he be like if he just couldn’t do things?” I meant really as far as his whole mental health was concerned as well as what would it be like to actually live with somebody. And actually it would have helped me hugely during that time to feel like I could just have gone and had, that, you know, somebody had legitimised or opened the door to saying, “Do you want to just come in and talk about, about how you feel about it or what you’re worrying about or, or anything?” So that would have been hugely helpful to me. And even just knowing then that I could have gone back, and maybe sort of asked for, I, I don’t think I needed a huge amount of help, but I do think it would have made a huge difference if I could just have talked to somebody at that time.

I think like a lot of people I have enough problems legitimising going to the GP even when you feel like there might be something the matter. So I think most people find it difficult to approach their GP about something, you know, in a sense I would see them as maybe thinking of it as being very trivial, that they’ve got people who are already affected by things, not people worrying about what might happen in the future. So I, I didn’t feel I could make an appointment and, and go and take up a GP’s time to, to talk over sort of being worried about those things.

Anna believes it was the right decision not to tell their teenage children until her partner's day to day life became more affected.

But equally I didn’t want my children worrying about things that they really didn’t need to worry about before they happened. You know, one of them then was in her, then was in her mid to late teens and was looking forward to going off and leaving home, and you just don’t want to have the burden of making that more complicated for somebody than it needs to be. And I think she’s, they’re both very, very thoughtful and considerate people and I think they would worry about him, they would worry about me. And I just, whilst he’s relatively unaffected, I think it’s important to try and protect them from as much of that for as long as possible. So I still think that’s a very good decision.

Anna hadn't realised how difficult it would be to not tell anyone about her partner's diagnosis.

Because we didn’t know how things were going to go and felt very, very conscious of the fact that as soon as people knew that he had Parkinson’s disease, people would perhaps begin to treat him differently or make different assumptions or react to him differently. So I think both of us felt it was good to protect him from that. I certainly did, just because of other experiences that I’ve had and, you know, you see how people do change once people have had a diagnosis of various different kinds.

 

I was just saying one of the things I hadn’t anticipated, about making that decision about not telling people, was I’ve actually found it quite hard not to become more withdrawn just in friendships and life generally. Because there’s times when people have said things, when you want to be able to say, “Actually this is what I’m worrying about.” Or somebody makes a joke about something, about Parkinson’s and you want to say, you know, “Don’t say that in front of him.” But there’s been a number of occasions when I wish I could have talked to close friends about it. And I just, there’s only a couple of people who are, who I trust well enough and are separate enough from my day-to-day life or are very, very close to, that I’m very, very close to and I know absolutely would protect those confidences. But there’s a lot of other people I’m close to that I would have liked to have been able to talk to. And it, the subtlety of the way that it actually changes your relationships with people and makes you more sort of withdrawn in those relationships is something which I’ve found quite, definitely found quite difficult to deal with over, over the last little while.