Keith - Interview 14
Age at Interview:
Age at Diagnosis:
Married, adult children, retired principal lecturer.
Brief outline:Keith’s symptoms have progressed slowly since he was diagnosed in 2004. His symptoms are tremor in his left hand, slowness and fatique. He is currently taking Madopar.
More about me...
Well he confirmed that I’d got Parkinson’s. Mind you, the doctor had already suggested it and I was convinced I’d had it because I got lots of books out of the library and read up all about Parkinson’s. Looked at all the symptoms and ticked them off down the list. And so the neurologist’s letter to the doctor said I confirm yours and his diagnosis. So more or less he was accepting what the doctor and I had both agreed that I’d got Parkinson’s.
I think a lot depends on people’s personality. Do they want to know as much as possible about it? I mean if people are curious and want to know as much as possible then join the Parkinson’s Disease Society and get hold of their booklets. And go along to the Parkinson’s support groups if there’s one in the area or Parkinson’s Disease Society branch because that’s where you can meet other people with the problems. I suppose before I was diagnosed I didn’t know anybody with Parkinson’s, never had met anybody with Parkinson’s. And then suddenly if you go along to these branches or support groups you meet other people in the same boat and you realise that you could be a lot worse. Mind you, that’s got good sides and bad sides, you might realise that’s what you’re going to be like in due time, few years.
I mean, you know, I’d rather have Parkinson’s than have a sort of a form of cancer that was developing rapidly. So things can be worse. But they can, you have to just keep adjusting to your own sort of problems. And sort of, that’s the other funny thing about Parkinson’s that it’s, it’s very individualistic. Not everybody has the same symptoms whereas lots of other diseases the symptoms are very, very similar and you can sort of go straight from the symptoms to specific diagnosis. Whereas with Parkinson’s, the symptoms vary tremendously from one person to another, and the combination of symptoms that people have vary tremendously. And this is a very sort of intriguing thing in a way but sort of also a very sort of frustrating thing. You’re not quite sure which aspect is going to get worse and which you can live with and which you’re going to find frustrating. So that’s one frustrating aspect of Parkinson’s.
Well I suppose I’ve got used to having it and think, ‘well it hasn’t progressed as rapidly as I feared over the last three years.’ So if there’s somebody in the Parkinson’s Disease Society branch support group that’s had it for twenty years and I can look at her and think, ‘oh well if that’s what she’s like after twenty years.’ And other people [who] have had it for a long time don’t seem to be quite as bad as you imagined. So in some way you’re trying to measure your own progression and the progression over the last three years is not quite as bad as I’d feared. So in many ways I’m a bit more optimistic than I was.
Okay but seeing other people helps in some ways?
In some ways, yes. It’s got pros and cons really. You can see what they’re like but you feel well you want to ask them how long they’ve been like that and you really want to be, asking them all the questions about how long they’ve had it and what patterns take developed since they were first diagnosed to see if there’s any parallel. But as I said before the symptoms are so individualistic that you really can’t draw too many conclusions from other people’s experience unlike lots of other diseases.
The tremor seems to be the biggest problem. The tremor seems to be constant and sometimes it’s quite vigorous, so vigorous that, you know, it’ll shake my whole body. And if I’m trying to write, if I put anything on the table and my hands, left hand is on the table, it shakes the table. So that’s one of the problems. But funnily enough it seems to be reduced if I’m working in the garden. I don’t notice it quite as much.
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