Natalia - Interview 18
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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...
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...
Natalia could hide a lot of her problems but they led her to give up her post as a university...
Natalia enjoyed meeting a local man with Parkinsons and found a local group more reassuring than...
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...
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.