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Keith - Interview 14

Age at interview: 74
Age at diagnosis: 70
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.
Background: Married, adult children, retired principal lecturer.

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In 2004, Keith started having leg cramps and cold feet. He noticed his voice was becoming weaker and he was getting very tired. His GP tested him for thyroid problems but the results were negative. A year later he noticed pain and stiffness on his left side, a tendency to stumble, tremor in his left hand and difficulty in clenching and unclenching his left hand. His left shoulder was painful when he lay on it. He also noticed that he was having difficulty ordering and articulating his thoughts. Swimming was more difficult than it had been before and he often felt fatigued. At this point Keith’s GP told him that he suspected this was Parkinson’s disease and referred him to a neurologist.

 

When Parkinson’s disease was confirmed three months later by the neurologist, Keith was very shocked.  Until he was 70, he had been very fit and active, working out in the gym twice a week and yoga once a week.

 

His symptoms have progressed slowly. His walking has slowed down but he makes an effort to walk into the town and back several times a week. He has had to curtail many of his former activities, gardening, watch-making and writing.

 

Currently his main symptom is a constant tremor on his left side, which can sometimes be vigorous. As a result, doing anything intricate with his left hand, such as buttons or laces, is impossible. The more distressed he feels, the worse the tremor is.

 

Keith currently takes Madopar; he experiments with the timing and frequency of when he takes it, but he doesn’t find it makes much difference to his symptoms. He worries about the short and long term side effects of his medication.

 

Physiotherapy has helped with the pain in his shoulder and occasionally he does a range of exercises which make him feel better. Difficulty using his left leg tends to improve after walking. When his fingers lock he pushes them together and clenches and unclenches his fist to release them.

 

He is still driving and his licence has been renewed for three years, but he has changed to an automatic car which he finds easier to drive. They still take holidays and find travel to Europe on Eurostar is not a problem.

 

Keith's tremor is constant and interferes with whatever he is doing.

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Keith's tremor is constant and interferes with whatever he is doing.

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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.

 

If I wake up at night I find that my arm is shaking like mad and I don’t know whether it’s, that’s started and woken me up or it’s just the fact is I’ve woken up.
 

Tiredness had forced Keith to give up doing some of the things he most enjoyed.

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Tiredness had forced Keith to give up doing some of the things he most enjoyed.

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I’ve always been used to doing lots of things. I have a big garden to keep on top of, hobbies, a lot of writing. And after I retired I trained as a watch and clock maker and that became a hobby. Now I can’t even hold a watch still in one hand at all so I can’t follow up my hobbies and my writing has got very bad. And so I find I can’t do any of the things that have always interested me. And even the gardening is very hard. I can’t work for very long before I get tired and have to rest. I can’t keep on top of the garden now. Having to employ people to come in and do work for us.
 

Keith's initial symptoms were put down to thyroid disease and he developed many more before an...

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Well in 2004 I had problems with cold feet and occasional leg cramps at night and I was getting very tired. My voice lacked power and I saw the GP and he did blood tests for thyroid problems. Those were negative. And then the next year I had several problems on the left-hand side of my body as though I’d had a stroke. My left leg wouldn’t swing normally and the left foot seemed to drag. I couldn’t walk at normal pace and weaved from side to side. I got a lot of pain and stiffness behind my left knee like a strained muscle. I tended to shuffle along in the house. I also developed a tremor in the left arm and hand and I couldn’t move my left fingers independently nor clench my fist. My fingers in both hands tended to lock up when clenching fists. I had a lot of balance problems as well. When bending forward I tend to fall over and the voice problems persisted. 
 
Then I started developing mental problems, ordering my thoughts and articulating. I’d got restricted movement in my left side, particularly in my left shoulder which was painful when lying down on it. And it aggravated the tremor. The tremor seemed to increase after exercise. So that’s, those were the sorts of things that were causing me problems and I saw the GP and got referred to a neurologist.
 

Keith had done quite a lot of research before going to the neurologist.

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Keith had done quite a lot of research before going to the neurologist.

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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.

 

Okay and when you realised that you had Parkinson’s how did you feel about that?

 

Well I gradually got accustomed to the idea that I’d got it through looking at the books and realising what the diagnosis was. So it was a bit of shock really because until then I’d been very healthy.
 

Finding out about the disease has its pros and cons. Because the disease and the symptoms vary so...

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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.              

 

Keith admits that part of his interest in other people with PD is to make comparisons with his...

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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.

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