Parkinson's disease

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.

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.

There’s a lot of help and support out there and [my husband’s] you know, determined to, to get through this. We’ve got a very good family and friends. I do feel guilty sometimes that if I don’t have the patience, sometimes if, you know, with, my husband’s struggling with something, I’d say nine times out of ten that I have got the patience there but sometimes, I’m working full time I get tired. But, you know, if ever that happens and it’s not very often we always, you know, it’s not a problem, it’s something that we get through together and I think he understands it’s not easy for me sometimes.

And I suppose sometimes as well with the children I think, you know, I try not to put any burden onto them but sometimes I want to say, “Come on, you know, we need to pull together and do this, you know, get through this for Dad as a family.” But then by the same token they’re still children, and they’ve got, you know, demands from school and they’ve got, they’re going through difficult things as well themselves. So sometimes it’s hard, you know, as a family to get through sometimes.