To be honest, part of me was reluctant to watch this programme. I do have a pretty good idea of what’s in store for me, courtesy of Parkinson’s, but I don’t like to dwell upon it. It is, frankly, quite depressing. But there is a terrible fascination with these things… plus, of course, it is always interesting – and potentially useful – to see how other people cope.
Barbara Thompson is a musician, and so it is not surprising that music is part of her coping strategy. She talked about how she “escapes” into music – but, unlike the layperson, her escape seems to be centred on the process of creation; she describes listening to a work in progress and thinking about what she could do with it. But Barbara’s musicianship is, almost paradoxically, threatened by her medical condition. She’s a saxophonist, and her ability to play live depends not only on her manual dexterity but also her stability. The drugs she takes to control her dopamine levels cause a phenomenon called “dyskinesia” which causes uncontrollable movements, making it difficult for her to play onstage.
Barbara’s husband, Jon – a fellow musician – comes across as a very patient and considerate man. But it is he, not Barbara, who expresses the most frustration, both with the constraints that Parkinson’s puts on their working lives and with the imperfect solutions that modern medicine provides. Perhaps this is due to their different personalities – maybe Barbara has always been stoic – or perhaps it is due to Barbara’s evident exhaustion, but I suspect that it is more that she dare not allow herself the “luxury” of frustration. At one point, shortly before a concert, Jon tells us how the apomorphine pump system that allows Barbara to play live creates “nodules” under her skin, restricting future injection sites. He is ardently frustrated on her behalf. She – who is in a “down”, or “off”, state at the time – merely says that it’s a miracle drug.
In another scene, Barbara and Jon are talking to the consultant doctor. Jon asks whether people who are driven – as Barbara is (to create) – are better able to cope with Parkinson’s. The doctor hesitates before stating that, actually, such people are more likely to develop Parkinson’s. but, he adds, they are also quite good at coping, because they have an avenue of escape, and any mental endeavour is, he says, beneficial. He also talks about the drugs and how some of them (dopamine agonists, for example) can draw out the obsessive aspects of someone’s personality.
Evidently, this doctor believes in the existence of some kind of “Parkinson’s personality”. He even describes it. I don’t know if he is right (or if I fit the personality), but I do feel certain that only a small proportion of people who are in some way driven or obsessed will develop Parkinson’s.
It is, however, slighty perturbing to see that one of Barabara’s former bandmates, the pianist / keyboard player Bill Worrall, is also affected by Parkinson’s. He is strongly affected on the left hand side, and the drugs are not capable of restoring the dexterity to his left hand. He can no longer play his instrument properly.
I felt a great deal of sympathy for this man. He, unlike Barbara (for whom I also have sympathy, naturally), has lost his primary creative outlet. My left hand is similarly affected (although I have not tried all of the drugs, I think, that he has), and I am very grateful that my creative outlet (painting) does not require much in the way of dexterity from my left hand.
This was an impressively comprehensive documentary. It was filmed over a surprisingly long period, which allowed a narrative to develop. We saw Barbara consider different treatments, and we saw the difference that the new treatment – apomorphine – made to her. We saw Barbara and Bill at a “Sing for Joy” musical therapy group (he sang – rather splendidly, I thought – and she accompanied the group on a recorder). We saw several aspects of how of with Parkinson’s can be. Barbara still cooks. She still plays tennis – apparently, she can thwack a ball around a court as well as she ever could; she puts this down to an unconscious alternate mode. And, of course, she still composes and plays music. She carries on.
Which is more or less what she says in a statement that was published on the Temple Music site.
I decided earlier on that the only way to cope was not to make it the main point of my life, but treat it as an unwelcome visitor, whom if you made comfortable, made less demands on you. Most of the time when I am concentrating on what I am doing, I don’t give PD a thought.
– Barbara Thompson