Blogging with Parkinson's

A personal perspective on Young Onset Parkinson's

On watching “Barbara Thompson: Playing Against Time”

18 Comments

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

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18 thoughts on “On watching “Barbara Thompson: Playing Against Time”

  1. Thank you for this. I can really sympathise with your feelings about watching the programme – I found it hard enough with just the possibility that it might end up happening to me…

    I did find the character and behaviour of Jon interesting. I imagine that his expressions of frustration, and much more active approach to the whole thing, are a coping strategy as much as a reflection of personality.

    • It must be difficult watching your loved one deteriorate and being unable to do anything, possibly harder than being the one who is ailing. That applies to every illness, not just Parkinson’s. I think he was trying to do what he could – all those questions he was asking, for example (some may have been for the camera, but I got the impression that he would have asked them anyhow). Like you say, a coping strategy.

  2. Wonderful post! Since I draw in my spare time, as you paint, I am thankful every day that I’m right-handed, with my left side being the affected side…for now. However, on a less optimistic day, I worry how long it will be until that changes. Creativity is definitely an outlet for the frustration.

    Like you, I’m a little skeptical that there’s a specific PD “personality”; maybe it’s because that theory makes me feel somewhat that I’ve brought this on myself.

    I love her quote at the end. I find I have to listen to my “unwelcome visitor” and make the required accommodations as well.

    I hope this program is shown in the US in the future!

    • I have been told – and the same thing was repeated in the programme – that the side that the Parkinson’s starts in will always be your worst. I’m sure you know that. But still, I cannot hep but be concerned about the loss of dexterity in my right hand. I hope that the day the symptoms make it to the right hand side is a long way off, for both you and I.

      I’ve heard variations on the PD personality theory before (I read somewhere that PD is more likely to happen if you’re intelligent), but I understand that it’s purely an informal observation.

      Hopefully the Beeb will show this film on the World Service at some point. It was included in a jazz season here; I think that that might have been influential on its measured approach (jazz being a serious type of music, often associated with intellectual types, with a relatively low media profile). It wasn’t a sensationalised look-what-these-drugs-do! show, nor was it an isn’t-P-D-terrible? show. It mentioned a couple of the Parkinson’s charities – Barbara Thompson has performed at the Parkinson’s UK Christmas Concerts, and she is also involved with the Cure Parkinson’s Trust (there’s an amusing adaptation of Billy Joel’s “Always a Woman” that she performs with Tom Isaacs, co-founder of CPT) – but it wasn’t a begging programme. It was dignified, realistic and (thankfully) not too depressing.

  3. Am going to watch then will come back. Just have to screw up the courage iykwim. Thanks. S

  4. Hmmm…now that you’ve mentioned that you’ve read that PD is more likely to happen if you’re intelligent, I might have to agree! 😉

    In all seriousness, I go to the Parkinson’s Institute here in Sunnyvale, CA, and there does seem to be an inordinate number of very articulate, bright patients. (Or maybe the intelligent ones are the ones seeking first-rate care…who knows?) Love your blog…always insightful.

  5. Please, please please BBC show Barbara Thompson’s ,playing against time on BBC world. There is so great a need for information about this condition around the world so those with can go for the best treatment and also amongst medical professionals everywhere.
    Yours Sincerely
    John Barrett
    Secretary of the Parkinsons Disease Society of Karnataka, India

  6. The consultant is Professor K. Ray Chaudhuri of Kings College Hospital in South London, who has been a leading light in getting recognition and treatment of the non-motor symptoms of Parkinson’s, and has had a considerable impact on how the disease is managed in the UK. He is also quite a good jazz/rock guitarist.

    • Thank you, George. I didn’t catch his name when I was watching the film.

      • Dear Zalamanda,
        I am compiling a dossier on reaction to the film, on which I was researcher and assistant producer (and sang “Dopamine Dysregulation Syndrome Blues”). Can you please contact me at: nardis dot 227310 at btinternet dot com
        as I would like to quote extensively from your blog.
        It would help get a repeat on the Beeb
        Best wishes
        George Foster

  7. BarbaraThompson playing Andrew Lloyd Weber’s variations still sounds great, and will outlast most of what we hear today. Musician through and through.

  8. does anyone know where I can get hold of the film please? my dad has developed parkinson’s and I’m very keen to find it.

    best wishes,
    alan

  9. I have Parkinson’s (and so does my father) and this article reinforces the shoddy treatment that Parkinson’s patients receive. Shoddy treatment, you say. Yes, because regular medical doctors (in the USA) are only using standard treatments that have been approved by drug companies. I am going to attach a bunch of links for your approval. First of all every Parkinson’s patient should take at least 1,200 mg of CoQ10 a day because it slows the progression of the disease:

    http://altmedicine.about.com/library/weekly/aa102602a.htm

    After I started taking CoQ10 my twitching and tremors almost completely disappeared.

    Secondly, there was an abstract completed by a company in Florida, USA called Neuro Research and what it involved was selecting 1 Parkinson’s patient from a group of 254 who had received every form of traditional treatment. Everything eventually failed, as it usually does, and they wanted to drill into his head to perform deep brain stimulation. He refused so Neuro Research put him on a balanced amino acid therapy program and his ability to use the keyboard and guitar were restored: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3068871/

    Here are one results paragraph from the study:

    Within 4 months of initiating treatment the patient experienced dramatic improvement in the tremor in both the upper and lower extremities. He regained coordination in his left hand and was once again able to use the computer keyboard. He resumed his hobby of guitar playing and was able to perform proficiently. His gait and balance were restored. The depression improved significantly. Anxiety was significantly relieved. The patient had lost his fear of going out in public.

    If you are worried about Parkinson’s disease (have a history of it) drink black tea. Yes, black tea. According to research done in Singapore there is an inverse relationship between black tea and Parkinson’s. Meaning if you drink 6 cups of black tea a week you can reduce your risk of Parkinson’s by 71 percent: http://aje.oxfordjournals.org/content/167/5/553.full.pdf

    Please pass this information to those who need it.

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