Parkinson's disease

I think probably when my husband was referred by his GP to the consultant I think, although we didn’t realise it at the time, I think then he had an idea of what it was going to be. And that was fine I think that he didn’t say because at that point he wasn’t sure. And then when we went to see the consultant, perhaps in hindsight it might have been better to wait until after he’d had the MRI Scan. I don’t know whether we could’ve prepared ourselves any better because, probably at that moment of being told will always stay with us. I thought when the consultant went out of the room and then came back in again, I almost felt afterwards that it was hard for him to say to us, and he, he was almost sort of, you know, preparing himself because, although he’s probably done that lots of times it was difficult for him too, because he was giving us bad news and it was a shock. And I think probably he did it the best way that he could and that, that was fine for us. So it would’ve been there, sooner or later. So probably, that was the best way that we were, we were told really.

I was very, very stressed and I just felt, my body just seemed to be getting more and more stiff up one side. And I went back to my doctor who had, who had been monitoring me through that period he knew I was under a lot of stress, and I just said, “Look, you know, I’m so stressed my body’s atrophying.” [Laughs] and at that point he said, “Oh, you know, I think we might need to send you to a neurologist, it probably is just stress but we need to send you just to see.” And I had no idea, I had no idea what that might mean. I still assumed that I was just so stressed because I was fighting this redundancy [tuts] so I got this, they got this appointment which did come through reasonably quickly and it was two days after the date of which I was made redundant and then redeployed [laughs], so I was really quite a shell-shocked anyway. And I just went into this consultant’s room and he said, “Oh you’ve got Park….” “Oh.” He said, “Do you want me to tell you what the matter is?” And I wasn’t expecting, I hadn’t done any background research, I’d assumed it was all connected to just being stressed because of this redundancy, so I had no reason to think that he was going to tell me anything difficult. So I said, “We, yeah there’s no-one else here so you may as well, may as well tell me because I’m here now and I’ll, I’ll worry if you don’t.” So he just said, “Oh you’ve got Parkinson’s.” And I was just absolutely dumbfounded... and I felt unable to, I wasn’t even taking the information in, I hadn’t, I’d no idea what was, what even to do about it, or what the impact would be, or anything really, and, what was interesting is I had told my manager I was going to go and see the neurologist and he obviously didn’t know what it meant either because otherwise he’d probably would have not had been able to, they would probably would’ve had to extend my redundancy date, because it’s not good practice to actually, you know, do what happened to me. So it, I suppose other people haven’t got awareness either.

In the beginning I’d had a lot of tests and they couldn’t actually confirm the diagnosis. And at one stage the neurologist said to me, “it could possibly be MS. You could be in a wheelchair in two years or running a marathon in twenty. I can’t tell you what’s going to happen” which was not very nice, very upsetting. And then of course four years later when my symptoms progressed I was then told that again they weren’t, that it wasn’t a conclusive thing, “but take this medication away with you and try it.” And so I found out I had Parkinson’s by looking on the internet and, it wasn’t a nice way to find out that you had a disease. 

I looked at my legs, I was actually sitting on the beach and one of the legs was shaking but it gave me no associations. So when I was diagnosed I wasn’t shocked or anything I was, I just accepted it. And I think acceptance has been acceptance and denial, both have been my attitude to the disease. Acceptance of the fact that I, I was suffering a lot from tremor but denial that this in any way influenced me. I had a job at that time which was quite demanding and I continued to, to let me be in demand and I was responsible for a [public health] programme.

I wasn’t unduly dismayed. I’d seen it coming by identifying the symptoms in the encyclopaedia. And I remember thinking the first day that I thought I might have it, I thought, “Well, if I have got it, I will have to write something about it” because I’m a writer by profession, or one of my jobs is being a writer. And so, it’s, the way out of all, all predicaments is to write, is to write about it. And I’m trying to do that at the moment. So it, it didn’t sort of, it didn’t sort of hit me, wham, like that, out of the blue, it was something that had been creeping up all along. 

Yes, I, I did used to get upset, because I knew something was wrong. And when you’re trying to get it through to somebody who tells you there’s nothing wrong with you, then, you, you know, the, the, it is a bit sort of hard. And you feel you want to get up and slosh them one really, you know, sort of.

 

I told one of me sisters about three years ago, and she told the rest. So obviously it was a shock to them when they knew. But because I had that ME as well, they thought it was just the ME and not, and not with that Parkinson’s. So I suppose, yes, maybe it might have been a bit of a relief. I don’t know. Because in actual fact one of these friends, because we were going away on holiday with them, and I’d been up and seen that consultant in [name of hospital] and he said there was nothing wrong with me, and we’d gone on holiday, because we was away with them. We came back from being out for the day and I sat down and they started. “Oh, oh” I said, “My arm is hurting me again.” I felt like just sitting down. And she said, “Now come on, get up. The doctor said there’s nothing wrong with you. So get on with it.” And that would annoy you like, you know. But then you can understand her because he said there was nothing wrong. So, yes, it was quite frustrating really because you can’t do no more and tell them like how you feel and that.

I knew what he was going to say. I knew what I’d got. I think you do. What he actually said is, “You’ve got symptoms that lead me to believe you might have ..” And I could have finished that sentence. But the very biggest one, the diagnosis was just an enormous shock. However much you know what you’ve got, to actually be told you’ve got it, I knew I’d got it, I didn’t want anybody else to know I’d got it. It was the bringing it out into the open that was so difficult because if you can keep it private you’re in control. Whereas as soon as it came out into the open my life was simply taken over. 

When we first thought about having Parkinson’s, my husband and I  were [name of town]. And we sat and discussed it and said, “If I have got this, let’s do something positive. Let’s go and have a holiday of a lifetime. Let’s live.”  So we, that first year we planned, the whole year, and the second year we went  to New Zealand for six weeks. Wonderful holiday, the best thing I ever did, we ever did.  It was just fantastic and it made me realise that life’s for living. And I didn’t know anybody who had Parkinson’s. But then found out that [in name of area] where I used to live, there was a lady who I was, an old lady who I was very fond of, who I found out had had Parkinson’s for ten years and I didn’t realise. And she was a fighter. She baked every day and gave things away, and said, “I’m never going to stop, because if I stop, I’ll never get going again.” So I thought, “Right, that’s the same with me.  I’m going to do things that,  that I want to do, that I need to do.  If I want to work in the garden, I’m going to work in the garden.”