Natalia - Interview 18

Age at interview: 63

Age at diagnosis: 55

Brief Outline:

Diagnosed in 1999, Natalia takes Madopar and Mirapexin but has times during the day when she feels weak, and has difficulty standing and understanding and participating in conversations.

Background:

Widow, 1 adult daughter, living alone, retired university lecturer.

More about me...

Natalia’s early symptoms were difficulty in handwriting and a change in her gait, noticed more by other people than herself. Because her symptoms started soon after the death of her husband, her GP attributed them to her bereavement. Tests in hospital did not produce a diagnosis but she guessed what the problem was after reading an autobiography by Jacqueline Du Pré whose father had Parkinson’s disease. The more she read, the more convinced she was but the first neurologist she saw did not confirm the diagnosis. She asked for a second opinion and this time Parkinson’s was diagnosed.  She started on Madopar which made her much better for a year.

 

Subsequently a new consultant has tried her on various medicines. In an attempt to understand how the medicines were affecting her, she found it useful to make a graph of her symptoms in relation to when she took each dose. When she was first on Mirapexin as well as Madopar she became so depressed she was unable to work. But as the dose was increased and it began to work, she felt better. She has remained pretty well and is still on Mirapexin but has times when she feels weak, has difficulty standing and  understanding and participating in conversations. When she feels weak she feels her brain does not get its messages to her arms and she can’t do move papers around her desk or cut her food up. It usually occurs when she is due for her medication. But after taking it, it may be some time before she actually recovers.

 

To others she appears to be well, so people are not always aware of the problems she is having and she finds this annoying when actually every day is a struggle. Sometimes in shops she explains her problem and gets a sympathetic response, though some people don’t believe her and think she is too young to have Parkinson’s disease.

 

She feels it should be easier to see a specialist at least every 6 months. She often gets to see the specialist nurse instead. She wonders how, since so little interest is taken in her progress, the doctors know what Parkinson’s disease is really like for patients. The nurse has suggested she could experiment with different doses and timings of her drugs but she is afraid of the effects this might have.

 

She prefers not to think about the future but so far feels lucky that her Parkinson’s disease has not progressed fast.

Natalia had not been convinced that it was appropriate to accept advice on medication from anyone other than the neurologist.

What happens when you go to the neurologist, when you did go? What happened last?

 
It’s all rather quick really. He says, “How are you? Yes. Blah, blah, blah. Keep taking the medicine and, and whatnot.” And, but the last time I went to see the nurse, she said I could experiment with it a bit. And I could experiment perhaps having it instead of every four hours, taking some of it every two hours. But the thing is you have to experiment again over two weeks or something, and I’m very loath to do that because it might interrupt my time as it were and might put me out. So I haven’t done that yet. And I’d like to know really a bit more scientifically about this experimentation really. You know, should I halve, halve any of these pills I’m taking one of them, or should I just take one of them in the middle, or what will happen? I’m a bit, I’m a bit frightened really of changing the routine, because the routine is working fairly well now. But  it could be better.

Natalia had difficulty persuading her GP that her symptoms were not just delayed reaction to the loss of her husband some years before.

My husband died in 1995, I think it was about 1997 that I was diagnosed with coeliac disease. But then I continued to be a bit weak. And then I noticed that I was becoming very clumsy, I was bumping into things. And one day a colleague was walking with me and he said, “Why are you walking in that silly way?” So I obviously had a changed gait. I hadn’t really noticed it particularly, but I did. And then later on I found that I couldn’t control my writing. My writing was getting smaller and I went to the doctor for, for various tests. Well, I actually went to the doctor and my GP didn’t think I had anything wrong with me, because she thought it was all due to my bereavement that I had these symptoms. But I knew that there was something wrong.

 

Anyway so I had this altered gait. I can’t quite explain it, but I wasn’t really walking straight. It was as if my centre of gravity was in a different place, was pulling me away. So I wasn’t walking properly. Then I had this writing. It was becoming more and more difficult to control my writing and I went to the hospital for various tests. I wish I could remember the name, but I can’t remember the name of this test on your brain. But anyway the tests were, were fairly negative. 

 

But then I was reading a book by Jacqueline du Pré, an autobiography of Jacqueline du Pré, and it said, talking about her father she said, “Then my father’s writing began to get smaller and he was diagnosed with Parkinson’s.” This was the first time I had assimilated the idea of Parkinson’s to my, my condition. I hadn’t thought of Parkinson’s.

Natalia could hide a lot of her problems but they led her to give up her post as a university lecturer.

Yes, yes. Yes, I went, I went back to work. I, I was, I was able to work, but I, I, I did find that every so often I get periods, and I still do of course, I get periods when I get very weak. And this would happen indiscriminately. So I wouldn’t really know if I was going to give a class and I would have this period when I was weak. And when I’m weak various things happen, and I don’t always, I’m not always able to participate so well in conversations and understand things that are going on. And it’s a bit tricky with, when you’ve got a class. Also I didn’t like lecturing like that, because I like lecturing standing up and moving around, and when I get weak I just have to sit down and I can’t really be very spontaneous. So I decided to take early retirement. And so I stopped in, I wish I could remember the date, I don’t know, about four years ago I think, I think it was something like that. And I haven’t worked as hard since, I mean, no, that’s not, that’s not well expressed. I’ve worked much harder since I’ve retired than I ever worked when I, than I ever worked when I was working. That’s not well expressed either. Do you know what I mean?

 

Did, how did your employers react when you told them?

 

Well, they saw me as being normal, you see. They didn’t see anything different in me. And even when I was weak I’d be weak in my office and they wouldn’t, wouldn’t appreciate it, they wouldn’t know that I was weak. I might have said to my closest friends, “I’m not feeling too good.” But when they see me looking just the same they didn’t appreciate it. And this is something that, it annoys me actually, when I tell people I’ve got Parkinson’s they say, “Oh, well, you don’t look as if you’ve got Parkinson’s.” I’m not sure why it annoys me really, because I don’t want their pity. But I want their understanding. I want them to realise that, what I’m going through, but they don’t really. And so it annoys me because, you know, every day is a struggle.

Natalia enjoyed meeting a local man with Parkinson's and found a local group more reassuring than she expected.

Yes, how old was I? Let me think. 55, I was 55, yes. Yes, of course I thought Parkinson’s was an old persons' disease, but again you realise when you read that it’s not necessarily.

Well, I deliberately didn’t really want to join the Parkinson’s, local Parkinson’s Society, because I thought I would be depressed if I went there seeing lots of people in wheelchairs and seeing people much worse than myself. But I did get in contact, somebody put me in contact with a well-known writer [who lives here] who had Parkinson’s. And we used to meet every month, and we used to meet over lunch and just talk about our symptoms, and unfortunately he died recently. But that was very useful actually. The only thing is that my Parkinson’s wasn’t progressing as quickly as his was. So that was a bit depressing for him. But to actually talk to someone who’s very articulate is, is quite helpful. And of course I joined the Parkinson’s Disease Society, the, the national one and I find their magazines are very helpful. And then recently my doctor friend said that she had a patient who had Parkinson’s and who was involved in the [local] Parkinson’s group, and would I like to meet her? So I rang her up and I, and I’ve been to one or two meetings. The first meeting I went to was, actually my consultant was there doing a question and answer session. And the people that were there all seemed much older than me. And they weren’t too bad at all.

They were, I think there was one in a wheelchair. You know, they weren’t in any bad state, which shows you that the Parkinson’s drugs have improved considerably. And this is in fact what the, the lecturer they had, my consultant said. He said, “I’ve been doing these talks for many years” he said, “And say fifteen years ago I would have been in a room like this and everybody would have been twitching and moving round. And here everybody’s sort of normal.” And that was quite heartening.

Don't lose heart when you start the medication. It may take time to begin to reach the dose which is right for you.

I think the first thing is not to lose heart when you’re put on medication at first and the medication gives you these side effects which are so horrible. I actually did some charts about, you know, when I used to get the leg twitches and whatnot, and I think my specialist found it quite helpful. But  not to get disheartened. Because you have these tiny doses and it builds up and it, and sort of miraculously it comes to the right dose at some point. 

 

I, think I was all on my own when that happened and I suppose it was difficult. I suppose if somebody else had been in the house or somebody, it would have been easier to bear really. But “Don’t get disheartened. And wait for the medication to work.” And there is a lot of medication now.  I mean I was put on the standard Madopar to start with. But I think there’s lots of different varieties and some will suit some people and some will suit other people.

Natalia saw a consultant who dismissed her symptoms and seemed irritated by her suggestion that she had Parkinson's Disease.

Anyway I went to see the specialist, and he was very cavalier and he only watched me walk over three yards. So you couldn’t really see within three yards whether my gait was changed or not. It wasn’t enough to see that. And he obviously didn’t like the fact that I thought I had Parkinson’s and that I had been reading about it, because he then wrote a letter to my GP saying, “[this lady] thinks she’s got Parkinson’s, but of course she’s been reading about it. I will see her again in a year’s time.” Well, this didn’t solve my problem at all, because I knew there was something wrong with me. I guessed it was probably Parkinson’s and this man refused to diagnose it for me. So I went back to my GP and I had to ask to see a private specialist, which I shouldn’t have to have done. But this was the only way I seemed to be able to have to get it diagnosed.

Natalia experienced 6 weeks of depression when she went on pramipexole (Mirapexin) but eventually felt benefits from it.

He put me on Mirapexin and you start off with minute doses. And it was absolutely awful when I started, because I started getting side effects, which I hadn’t had before, sort of twitches and whatnot. And I think it, I can’t remember now, but I think it’s something like six weeks until you get up to the full dose. And those were awful six weeks. I think I took a month off work actually. I can’t remember very well. It’s funny how the, your mind seems to shut down on unpleasant things, I’ve noticed. But I just used to sit, I was very depressed. I thought I would never get depressed because I’ve got various reserves. And I know that with Parkinson’s you can get depression. I thought I never would, but for, for one month I was extremely depressed. And I’d just come down, get dressed, come downstairs, sit in the sitting room, not be able to read the paper, not be able to look at television. I’d just sit all day. And I didn’t even want people to come and see me, because I felt I had nothing to talk about except myself, which was very boring. But anyway that lasted for a month, I think until the medicine started kicking in and I started feeling more normal. And it has made me feel much, much better. It has helped me, helped me carry on with my normal life.

Natalia is reluctant to change to a new drug and would like more opportunity to discuss it with her consultant.

The only one I had side effects from was this Mirapexin, pramipexole (a dopamine agonist) Madopar you just had all the time. And then I had recently, side effects that I said were sort of twitches and involuntary movements, which was difficult. But they would happen sort of late afternoon always. And then because the two weren’t working brilliantly I was given entacapone. I’m not sure whether it’s made much difference really. But I’m a bit scared of trying new drugs, because these drugs would have to be weaned off completely and I’d have to start again. So I’m not quite sure what the next stage is really. But it’s not too bad, so I’m not worried about it. I think that one of the difficulties is that you don’t see a specialist very often. There are very few specialists, and I would really, ideally like to see one every six months. I think, you know, it should be one’s right to see a, a specialist every six months. There is a Parkinson’s nurse here, who is very helpful actually. But she’s in a way a barrier for you to see the specialist. And now you don’t see the specialist through her, you have to ask your GP again if you can see the specialist. Which I think I probably could, but I think it ought to be one’s right to see them, and they ought to try and see you and follow you up really.