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Humphrey - Interview 01

Age at interview: 57
Age at diagnosis: 54
Brief Outline: Humphrey was able to continue working as a writer, broadcaster and musician after he was diagnosed. Although his Parkinson's was progressing fairly quickly he maintained a resolutely positive attitude, trying to solve each problem as it presented itself, such as voice recognition software when typing became difficult. He died unexpectedly of a heart attack in 2005.
Background: Married, children. Writer and broadcaster

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When Humphrey first noticed he was making unexpected mistakes in his typing and a tremor in his hand he assumed it was caused by anxiety. When he consulted a psychotherapist for anxiety and depression the therapist suspected a possible neurological cause for his symptoms. By this time Humphrey had been looking things up and had come to the conclusion that he might be suffering from Parkinson’s disease, so he was not altogether surprised when a neurologist confirmed this diagnosis. He continued to work, completing a biography of Spike Milligan, and working for the BBC but he suspected that the fact that he had been very open about his diagnosis was a factor in one of his broadcasting contracts not being renewed. He found it difficult to continue playing a keyed wind instrument, but was struck by the extent to which his symptoms seemed to disappear when he was playing the double bass during a jazz gig. He found the slowing down of his physical activities distressing and particularly resented the time wasted on simple activities such as dressing, and he tended to freeze, for instance when going up and down stairs. He noticed that in social situations such as parties, or when having to rise to an occasion, he was able to overcome his symptoms and function much more normally than when doing routine activities at home. He was treated with various medications most of which worked for a time but as the condition progressed either the dose had to be increased or he had to be changed to another treatment. Humphrey died unexpectedly in 2005 from a heart attack.
 

Humphrey began to realise that his symptoms probably added up to something significant and...

Humphrey began to realise that his symptoms probably added up to something significant and...

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Well, the first thing I noticed was my typing going quite badly wrong on my laptop computer. I was getting extra spaces between words and sometimes in the words themselves. So I got a new laptop, and it went on happening. At which point I began to think it might be me rather than the machine. Around the same time my walking began to get very stiff, a bit like Groucho Marx, and I didn’t connect that with the typing but it was disconcerting. I thought, “Am I nervous or what?” you know, slightly weak at the knees. It felt as if I was being tense about something but I, indeed I was because all this was happening very shortly after our younger daughter had a serious road accident which left her with a head injury from which she’s since made a very good recovery, but at the time it was very worrying. And it felt as if these symptoms were appearing as a result of the stress of that.
 
Anyway, the next thing was my handwriting getting terribly small. It looks as if it’s, well, it did then, it looked as if it was a mouse trying to write a letter. And then I found it getting more difficult to handle food with a knife and fork so that, you know, a plate of bacon and eggs was a kind of challenge in a way that it had never been before. I was a great, fast eater always shovelling food into my mouth and suddenly I was actually reduced to going like this. And there were other symptoms of that sort. And I went to the dictionary, to the encyclopedia quite early on and looked up Parkinson’s disease thinking, “This to me feels like what Parkinson’s disease might feel like”. And sure enough I had about three quarters of the symptoms. So I mentioned this to my GP and I said, you know,  “I, it’s coming and going, I haven’t got this permanently. It’s, it comes and goes”. And he said, “ Well, I think in that case it won’t be Parkinson’s. And in any case you’re too young”. 
 

Humphrey would have preferred to be able to cut his food with scissors rather than evoke pity...

Humphrey would have preferred to be able to cut his food with scissors rather than evoke pity...

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I think a big part of it is trying to avoid people’s pity, and people very nicely are keen to help. But sometimes you can land up sitting next to somebody at a dinner party, it happened to me at a wedding reception the other day, an old friend who was, you know, clearly upset when I picked up a wine bottle myself to fill my glass. “Let me do it for you”. I wouldn’t mind having my food cut up discreetly occasionally because actually battling with chicken breasts, why are there so many chicken breasts these days? hacking away at this stuff. And it would be quite nice to actually have a prior arrangement with the kitchen or to bring a large pair of scissors with you on outings but be seen cutting up the chicken that way. And the general sort of feeling that you’re being regarded as a ‘cripple’, awful word.
 

If the dose of Mirapexin pramipexole was too high Humphrey felt that it would be dangerous to...

If the dose of Mirapexin pramipexole was too high Humphrey felt that it would be dangerous to...

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I take three of those a day, one just, you know, the last one I take last thing at night as a sort of sleeping pill. If I forget to take it then I do notice the difference, I sleep better after it definitely. I take care not to take it before driving because it’s fairly quick acting and fairly soporific. And when I was on a larger, I’ve gone down on the dose, I’ve reduced the dose of this because, with my consultant’s permission, when I was on a larger dose I was falling asleep at the wheel of the car. And falling asleep in this sort of situation, I would have been [snore] off, you know, I mean I was literally falling asleep while, while talking to people and hearing myself talk rubbish. Microsleeps. They, microsleeps are, are, are a hazard. Yes, I do get them a little bit, a little bit now, not much, but I would say they were the only unwanted side effect that I get. The rest is fine.
 

Humphrey had looked up the symptoms and decided that he should write about his experiences.

Humphrey had looked up the symptoms and decided that he should write about his experiences.

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I wasn’t unduly dismayed. I’d seen it coming by identifying the symptoms in the encyclopaedia. And I remember thinking the first day that I thought I might have it, I thought, “Well, if I have got it, I will have to write something about it” because I’m a writer by profession, or one of my jobs is being a writer. And so, it’s, the way out of all, all predicaments is to write, is to write about it. And I’m trying to do that at the moment. So it, it didn’t sort of, it didn’t sort of hit me, wham, like that, out of the blue, it was something that had been creeping up all along. 
 

When he was a child Humphrey knew two people who had clearly recognisable symptoms of Parkinson’s.

When he was a child Humphrey knew two people who had clearly recognisable symptoms of Parkinson’s.

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Well, I just thought it seemed a bit like Parkinson’s. I mean I, I’ve seen people with Parkinson’s    
all my life. The first one was when I was a small boy and my mother used to take me to visit the gynaecologist who’d helped me be born, who was a Jewish refugee living in London in a flat, and he was very bent and shaky. And, you know, she said, “This is Parkinson’s”. And when I was at boarding school there was a retired teacher, who lived on the premises in a rather remote flat, who had it and would come out at night because he was embarrassed to be seen in the daytime. So both of those I suppose might have set up more sort of fear in me than it, they did. But, oh, and I mean, you know, if you’ve got a series of symptoms building up you begin to think, “What could this be?” And it became a fairly obvious explanation so I don’t claim any great skill with that. 
 

Humphrey describes situations when he often freezes and wonders why it doesn’t happen at other...

Humphrey describes situations when he often freezes and wonders why it doesn’t happen at other...

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Another symptom which people don’t know about a lot is freezing, which is exactly what it says it is, it’s just, you’re in the middle of doing something and you stop. It’s usually for quite a good reason. If you’re trying to walk through a narrow gap between two pieces of furniture, say, or if you’re having to come upstairs, and we live in a house full of stairs, for the, what seems like the fortieth time today, you think, “Oh, hell”. You can stand at the bottom for five minutes sometimes just doing nothing and waiting to get the energy together. And getting up out of a chair is quite an effort for me now. This chair’s all right, it’s got arms, but if I’m sitting in a, in a, on a low sofa, shall we say, or on the edge of a bed it requires a sort of one-two-three-heave and up you get. That’s, that’s quite depressing, the freezing, because you think, “It’s wasting time” or, “Why am I standing still here staring at these stairs? Why don’t I climb them?” On the other hand I find when I’m in a social situation, if I’m out to lunch with somebody or, you know, at a party that invigorates me a great deal and I don’t droop and sit in a corner and freeze. It’s, the freezing is normally only happening when there’s nobody else around to see it.
 

Humphrey's psychotherapist suspected that the depression he had could be related to his other...

Humphrey's psychotherapist suspected that the depression he had could be related to his other...

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And I was actually going to a psychotherapist at the time or shortly afterwards for depression, which has a link with Parkinson’s too because a lot of people, possibly even the majority of people with Parkinson’s have experienced depression. Now you might say that’s because they’ve got something to be depressed about, but it’s not as simple as that. It’s real clinical depression really, everything seems black. And I certainly had a, a lot of that around this time. And anyway the therapist I was going to eventually said, “I think you ought to try and sort out the physical diagnosis of your problems.”
 
You look it up in the encyclopedia, it probably says, you know, impotence and depression and so on and so on. But, no. I mean the depression I mentioned earlier, that is actually, that is interesting because the, the, antichol-, the dopamine agonist I take, pramipexole alias Mirapexin, they think of these names, don’t they, wonderfully cleverly? Buy one now! This, and when I started taking this I realized I didn’t need to go on taking the antidepressant and the sleeping pill I was using because this actually was, this was doing the job very well, and I discovered afterwards that it actually was developed as an antidepressant and then, they then discovered that it had beneficial effects on Parkinson’s as well. So it’s a, it’s a good little thing, this. And far from having side effects it has, has beneficial side effects.
 

Humphrey saw no reason why he shouldn’t continue to work and was very open about his diagnosis....

Humphrey saw no reason why he shouldn’t continue to work and was very open about his diagnosis....

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I do think it’s probably wise to tell people when you have been diagnosed. I mean I don’t see how, as I said earlier, one could carry on developing the symptoms and getting, you know, very slowly but fairly steadily worse, things like walking. I mean my walking is, is much worse than it was two or three years ago. Otherwise they’d think I’d been drinking for heaven’s sake, shuffling around like this. You’ve got to provide some explanation. But I think it is problematic and I think one should be, careful at first and there are ways of, there are ways of telling people and I think I told X in the BBC far too dramatically “I’ve got Parkinson’s”. Whereas nowadays I would say... “Don’t sack me, I’ve got Parkinson’s” [laugh] or something. It’s very hard, hard one to, to handle.  And if you are able to be discreet maybe you should try that, but I think it’s, I can’t imagine not being open about it.
 

Humphrey was curious about other people’s experiences of Parkinson’s and joined a group for...

Humphrey was curious about other people’s experiences of Parkinson’s and joined a group for...

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Well, I looked, yes, I did, I mean both, the people I, I know now who’ve got it, are both, I discovered them by accident and then pursued them. I don’t go to the Parkinson’s Disease Society local meetings and I ought to. I’ve no objection to going, I’m not.

I did join, I, something called YAPPERS which is Young Adult Professional or something, people with Parkinson’s who are still up and about and not old, not old. The branch I joined seems to have petered out or if, if it hasn’t it’s lost me, my mailing list address. Nothing’s really happened. I must make, I must make more effort about that because I am curious to see what other people experience and, after all you can often pick up tips. I think it’s important to try to share problems and look for solutions jointly.
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