Jean - Interview 33

Age at interview: 72
Age at diagnosis: 64
Brief Outline: Jean had noticed jumping in one leg and general difficulty walking for at least two years before she was diagnosed with both Parkinsons Disease and ME, having at fist been told she had nothing wrong with her. To high doses of her medication resulted in her having hallucinations.
Background: Married, 1 child, Housewife.

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...

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.

Jean’s hallucinations were very clearly related to her medication as she discovered after she was...

Well, I went in because I started to hallucinate. And they were sorting me tablets out. But one night I was pretty bad, very bad. Not that I remember. I remember shouting, and I’ll never forget that. And the doctor or someone come round here, it wasn’t my doctor, no way, and they said to, “Go to the hospital tomorrow.” Which [husband] did do, he took me up there. And that, that was a Friday, and then they said, “You’ve, you’ve got a water infection. So you should really be in.” That was on the Friday. And on the Saturday when I went up there, you had to see the doctor obviously to get in, they said, “I don’t know what this one’s here for. She needn’t be here.” So somebody said, “She’s got a water infection.” He said, “She, no, she hasn’t.” He said, whatever the word was he used, he said, “That’s common they get now and again when they’re on tablets.” ”But they was in, they were adamant I was going to have to stay there. So that was there, that was on the Saturday. And on the Saturday they decided, “We don’t understand your case, so we’ll take you off your tablets.”   
So at this point they’d taken you off the tablets?
And had you started to have all the symptoms come back yet?
Yes, that’s what I say. I couldn’t walk and I was shaking, just shaking. And [husband] got me up to the, well, he phoned up the professor and he got me up there.
And did he say that the hallucinations had been caused by the tablets?
He did? So did he change the tablets?
Yes, he knocked them right down. And in actual fact when he knocked them down, that was the start of my legs starting to ache like. But as he said, he’s having to find a happy medium, you know, with the tablets they ain’t working. He said like, “If I, if I give you more, you’ll be perfect walking all of the time and you wouldn’t ache. But” he said, “you’d have these hallucinations.” So he had to cut them down.

Jean’s early symptoms of Parkinson’s disease were confused with what may or may not have been ME.

I used to get like top of me left, at the top of me left leg, like a nerve kept jumping. And I had that on and off for about a year before it started to, it worried me. And then when I would get up and I was moving about it would stop again. And then when I sit down I used to cross me legs somehow to stop it moving and it could do that for a couple of hours. So I thought, “Oh, it probably is just a nerve.” But then I started getting, as I went to move sometimes I, I found me feet wouldn’t go as I wanted them to go. And my husband come home one evening from work, and I was really bad with me legs, and he said, “I’ll take you down to the doctor’s. You’ve had that for a long time.” And I went down to our doctor’s, and they’re a practice, they’re one of six. And if you go down you can see anybody without an appointment, but you can’t see your own one unless it comes up you can. Anyway he spoke to me and then he said, just said, “Well” you know, he couldn’t see anything, “It will be all right.” So from that time I, I really did sort of just struggle along. I used to get up with My husband, do his sandwiches for him to go to work. Then I would do that, then I would sit down, have a cup of tea and a slice of marmalade or something. Then that would give me just enough energy I could clear up in the kitchen and then have to sit down again. And from then I would go up the stairs. But it got me half, halfway up the stairs, then I had to sit down because I thought me legs wouldn’t carry 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.

Jean has been on Sinemet since her diagnosis 8 years ago. The ‘rocket’ which helps her so well is...

Well, when I first started taking the tablets it was very good for me really. Because from I couldn’t sort of, couldn’t pick up say that vest, I couldn’t pick that up and fold it, I couldn’t do that. In actual fact it’s just starting to go again. So that’s after all them years. So I’ve got to say after ten years this has just crept back in. So I, when I see him he’ll probably change me tablets. And it was like you’d been born again. That was the feeling you got. It was so nice that you could sort of go upstairs, come down and you could walk out. But you, as I say you can’t walk far because of the muscles. Then, they, they sort of do hurt you. But once I take them tablets, my husband calls them the rocket, once I take the rocket they work wonders.
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