Jean - Interview 33
More about me...
Soon after having an operation on her knee, Jean began to notice that one leg tended to jump about, she would have to cross her legs to keep it still. She was also at this time finding it increasingly difficult to keep going with her household tasks. She consulted one doctor who told her there was nothing wrong with her, but as things got more and more difficult her husband decided to get her a private neurological opinion, having been told it might be 9 months before she could get an NHS appointment. This was in 2000. Once she was started on anti-Parkinson’s medication there was an instant improvement. Over the 8 years since then she has had to increase her medication gradually. She had hallucinations from early in the treatment. During 2004 she had a time when they became frightening and distressing and was admitted to hospital where she was taken off all the medication. After this the medication was reduced and the hallucinations (with the help of Seroquel) reduced to a level where they were no longer frightening.
She feels at present that her symptoms are returning and expects that her medication will soon have to be changed or increased.
One of the things she notices when things are getting bad again is that she has difficulty putting on her brassiere and in drying her back with a towel.
Jean had been told several times that she had nothing wrong with her so her diagnosis came as a...
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.
Jeans hallucinations were very clearly related to her medication as she discovered after she was...
Jeans early symptoms of Parkinsons disease were confused with what may or may not have been ME.
You were talking about going up the stairs?
Yes, I would go up stairs I got up and, in three, three goes. I’d have to sit down and have a rest. And I could get, get up and off of, off of the bed. I’d make the bed. And then I had to shower while I was upstairs because I knew I’d never get back up, up them again. And that was all I could do. But in between this while I had that ME with it and I didn’t know. So I don’t know what the symptoms first of all, whether they were the ME or the Parkinson’s. Because they both, they sort of both come together.