Rafa - Interview 27

Age at interview: 51

Age at diagnosis: 49

Brief Outline: Although Rafa was diagnosed with Parkinson's disease 18 months ago he has not had to take any anti-PD medication and so far his symptoms have not progressed and do not cause him much inconvenience.

Background: Landscape Architect, Single, two children.

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About two years ago Rafa, who was a keen runner, noticed that after about two miles of running he suddenly found himself stopping and for a time unable to progress any further. The messages he was sending to one of his legs didn’t seem to be getting through. However after a few minutes things became all right again and he was able to finish the run. The only other symptoms he noticed around that time were a tendency for his right arm to be drawn towards his body and changes in his handwriting. He mentioned running problem to his GP and a physiotherapist who he consulted but was told that there was nothing wrong. However when he managed to demonstrate the problem on a treadmill the physiotherapist was clearly concerned and Rafi returned to his GP and asked for a referral to a neurologist. On discovering there would be a several month wait for this and having been led to suspect that he might have a brain tumour he decided to ask for a private referral. Here he was immediately told that his symptoms were those of very early Parkinson’s. His GP then agreed to re-refer him as an NHS patient and the diagnosis was confirmed by CAT and DAT scans. It was decided that no medication was necessary at that time, and so far, since that time there has been little if any deterioration in his symptoms. He has been able to keep the diagnosis from most of his friends and acquaintances being particularly keen not to burden his teenage children with the anxiety it might give them at a point when they don’t need to know and are unlikely to realise that there is a problem.

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While he was running one of Rafa's legs stopped working without any warning.

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I used to do a lot of running and, I still do the odd bit of running, but I started noticing about two and a half years ago, maybe a bit longer, that very occasionally when I was running after say two to three miles my right leg started to stumble. And that would go away so I just ignored it and then the pattern over a number of months became more predictable. And I thought it had something to do with the camber of the road being of a particular route or something like that. But it became very particularly accurate actually. It was two miles into the run my right foot wouldn’t lift up properly and became more pronounced and sometimes it forced me to stop. I continued to ignore this and until it became really pronounced and it was really the sensation was as if your leg doesn’t know what to do. You know what to do, you know you can do it but the leg doesn’t want to co-operate. And the symptoms would pass. Then later it became to be coincided with my right arm being pulled into my body as if it as if it was wanted move to the inside, peculiar sensation again.

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Though his symptoms had barely progressed since his diagnosis 18 months earlier, Rafa couldn't...

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From time to time I think the greatest the greatest worry you might have is that in two or three or five years time you cannot do the things you enjoy doing. Or it’s the uncertainty of it, the unknowingness which we all are aware of anyway. You can drop dead anytime, you can be hit by a bus or acute diseases or have an accident. We kind of all accept that but knowing that this clock ticking, or potential clock ticking, that will affect your movement or your life, your children’s experiences, your partner’s experiences things like that. That’s from time to time worrying.

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Rafa's neurologist reassured him about the beneficial as opposed to the possible harmful effects...

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I value his professional judgement and I’ve talked to him about, “Should I be doing normal things?” The only thing he’s advised me against is trying to run another marathon simply for the reason he mentioned that it it’s such an exhausting exercise to do.

He didn’t suggest it would do me harm. He said he strongly supported me in terms of doing as much physical activity as I could, going to the gym, playing tennis, playing saxophone, keeping active. He just felt that the marathon takes so much out of you it might not be helpful. He didn’t say it would be harmful. I’d take it implicitly that there was a suggestion it might be harmful.