(This piece was written to coincide with Mike Dibb’s documentary on the jazz saxophonist Barbara Thompson, and how Parkinson’s disease affects her playing life. The first time I saw it, at a screening last year, I knew I wanted to write something about my father, his Parkinson’s and the poem printed below the fold. I’d hoped a newspaper would run it — because I think the general topic’s important as well as interesting, and because I know Mike likes the poem — but though I sent proposals to several, and the finished piece to a couple, it was always going to be a complex balance of getting the proposal right, getting the piece right, getting the right section of the right paper, and getting the timing of my pitch right (not too early, not too late). I knew it was a long shot — it falls somewhat between tidy journalistic categories (poetry & music & health & family) — and in the event, I missed too many lead-times to find time to hustle an appropriate slot for it. So here it is. Update: Barbara Thompson: Playing Against Time, aired on BBC4, Sunday 19 February, 9-10.15pm UK time, but should still be viewable on via BBC iplayer for a while.)

A scientist and teacher by profession, my father had been an excellent amateur calligrapher in his youth, and an artist in ink, as well as an occasional poet. He was diagnosed with Parkinson’s Disease in 1967, but a badly shaky writing hand was the earliest symptom, some time before that, and he had to switch to his other hand to teach himself how to write from scratch, giving up drawing for ever. The condition takes you through cycles of capability — from flail to freeze and back — that mean that you are all too often not to be able to get your limbs to do the most ordinary things, such as picking up the pills which will cycle you through blessed mid-way periods of balance for a while, but then out again into the opposite unbalanced state. The effect on anything more deftly ambitious will eventually be devastating, but for some the slow on-set of the disease will mean — as my father’s poem below suggests — that the passions and possibilities of your art have become intimately tangled with Parkinson’s itself, how you feel about it, how you work with it; what you want to do, what you can no longer do. And in fact he lived with it — as did we, his family — for 43 years, an unusually long time.

Barbara Thompson, the virtuoso jazz saxophonist and composer, was diagnosed with Parkinson’s in 1997, and for five years Mike Dibb’s camera has recorded her, on-stage and off, as the moment approaches when she will have to retire from the public performance that she loves. To anyone with the condition, or in their close family, there will be many piercingly familiar elements in this documentary. Some of them are really quite small — a close-up on her fingers as she stiffly walks them among pills on a table’s edge, and the elegant little pillbox close by (living with dad, nothing was more necessary to remember than the baroque complexity, from the very start, of his regime of medication). Some things are deeper, and more subtle. Dibb’s film follows Thompson and her husband Jon Hiseman, the jazz-rock drummer, far into their domestic life together, at home, visiting doctors and on tour — and while Hiseman is not especially like my mother temperamentally, there’s something about the stubborn, almost dogged thoughtfulness that support for his life-partner has called from him, that I certainly recognise. Mum was dad’s primary carer for almost four decades, and solving practical obstacles together, large and small, requires great mutual trust and patient teamwork. If this occasionally came at a cost — being a carer will sometimes generate enormous exasperation, frustration, even angry resentment– it nevertheless created a deep bond between them that all the family drew on and worked with: something similar suffuses this film.

But there are differences too. My father was no musician, and Thompson is one of the leading players of her generation in her field. If you don’t know her name you will know some of her music: for example, she played the flute line in the famous themetune to the South Bank Show (Hiseman’s Colosseum II are the backing band), and the music — including the incidental wisps of heavily echoed saxophone — to the detective series A Touch of Frost are composed and played by her. But there’s as much mystery as recognition for me, when I watch recent footage of her on-stage, the fluid mastery of her instrument she still (astonishingly) retains as it combines with the characteristic Parkinsonian near-toppling jerkiness of gait. Is there something about the nature of music’s physical movements — technical virtuosities internalised over years of repetitive practice — that leaves them perhaps not untouched by the condition, but somehow sometimes given a kind of brief grace and remission… Or is it something about the abstracted state of mind when playing?

I’ve written about music long enough, and worked with enough artists and makers, to know that both are physical disciplines which flourish in the curious shadowland between willed movement and learned automatism — and this, of course, is the shadowland that Parkinson’s patrols and bedevils. It’s an affect that lurks between the imagined and willed consciousness. Think of yourself running downstairs — nimble and safe as long as you don’t think about where to put your feet. Now imagine this for every single movement you make, no matter how simple: every simple step you take; every time you pick something up; even smiling can be an effort. And for many sufferers, the medication brings hallucinations with it, distracting even when they’re benign — much of the time bedridden in his later years, my father now and then entirely failed to mark the difference between yesterday’s facts and events he’d that night dreamed.

Musicianship winds mind into exactly these learned traceries of agility and fantasia — all the patterns internalised, the scales, the arpeggios, the conventional turns and trills, figures and cadences, which an improvisor plays with, shifts and games and transformations passing across the face of familiarity faster (so it seems to outsiders) than thought can possibly consciously modify action. Somewhere in the pathways from brain to nerve and muscle, from imaginative concentration to the physical habits of its realisation, the signals the Parkinsonian is sending him or herself can curl back on themselves, and the body clogs or blocks or freezes, or else writhes into uncontrollable spasms. Which means — though he took early retirement and against all expectation lived for another three decades — my father wasn’t able to spend that time writing anything like as much as I believed he would have wanted, even while electric typing was still possible (with painstaking hunt-and-peck and clever ribbons that lifted any errors back off the page). The disease didn’t stop him composing poems in his head — but even the bouts of intense involvement sometimes overflowed into an over-stimulated jerkiness that made it impossible to keep the paper he was reading in his hands, or on his knees or the table. I don’t know if he’d have ended up a published poet if Parkinson’s hadn’t come for him when it did — or in fact if he even wanted this. His preferred style wasn’t exactly fashionable, certainly in avant-garde or middlebrow terms — though Thompson’s music isn’t, either, at least in the UK (some of her music you almost certainly know, but the musicians she tours very largely play only to audiences overseas, though quite large audiences). It wasn’t entirely a private pleasure for him — he liked when people read it and were interested or entertained — but it was perhaps never a driving, mono-focus passion either.

Not everyone will enjoy this poem about (and to) the condition, I imagine. “A Sonnet to PD” casts Parkinson’s Disease as something — or rather someone — external to him, a complex, witchy paramour, detailing the sinister, sensual physicality of this, its horrors and its allures. Which is a very particular way, and quite an unsettling way to see his situation, and the specifics of his relationship with this disease (he was intensely phobic about spiders), but this, I think, is what he’s exploring: the degree to which PD is a condition that can adapt itself to its target, as intimately and inimitably and wilfully as a problematic, unavoidable, unrefusable acquaintance. An acquaintance –– an entanglement, even a muse — who impacts on one’s ideas and sense of artistic self, and on the shape and direction of one’s creative ambitions.

There’s a fascinating moment in the documentary when Hiseman asks a specialist if there’s a link between obsessive, meticulous, vision-driven personalities — do they perhaps have an advantage, cope better as patients, he wonders? Well, replies the specialist, perhaps caught a little unawares, research suggests they may actually be more prone to the condition in the first place. Perhaps they do cope better — but the medication may also unmask the obsessive characteristics. The specialist is doing his job, of course, and this ultra-diplomatic mode of generalisation is unavoidable (why else use the word “unmask”?) Careful generalisation is what medical science is, and he’s probably anxious not to light too many fires of hope round essentially magic solutions — it’s a condition that attracts them — but nevertheless there’s an element of wily particularity to this condition. As you develop tactics to overcome problems, it’s learning them and somehow adapting: and this is magic thinking too, but of a rather different kind.

Our forebears certainly weren’t helping themselves when it came finding cures — or even just balms — but nor were they necessarily idiots when they thought about such conditions in terms of “possession”: the belief that sometimes there’s another being present, in the exact same body, knowing and feeling the exact same things, but with its own agenda; the belief in some being the patient is always in negotiation with; a being that you can on occasion negotiate a ceasefire with. Certainly this is not so far away from my own conceptualisation and practical-emotional coping mechanism, as a long-time secondary carer. My sister and I looked after my father — and after my mother too, when she became too stressed or unwell; our role became to untangle the conflicting requirements of their care, especially the emotional ones. And just as depressives personalise their condition as the “black dog” — a creature visiting and vanishing on its own timetable — Parkinsons was more easily lived with (for me) if I imagined it as a creature, sentient and even perversely clever, but not-quite human-sentient, which knew dad inside out, as he knew it. I too came to feel as if the condition had a personality, had agency, had its own individual relationships, with dad, with mum, with all of us, one by one: its own attachments and provisional allegiances and plots and wiles to divide us. Perhaps a little like some of the demons in Buffy the Vampire Slayer — they have their targeted passions and their allocated agendas, some of them are far from stupid, some of them can even be charming, but their comings and goings, their interventions and remissions are unbiddably theirs to confer or withold. Often and often, when my sister and I were strategising this emergency or that impasse, all this was whispering in the back of my mind.

Plainly it would be fanciful — and ridiculous — to argue that BT’s approach to her musicianship conjured the demon into being, that it’s somehow an artefact of her shaping herself into so focused and driven a master of her craft. But is there something about the act of playing that lulls and enchants it, at least for a while? She talks about music — composition as much as performance — as an “escape”; about it being a place where she isn’t constantly reminded of the realities of the condition. A lot of the daily fact of dealing with it is mundane and unglamorous, without even getting into the blandly anonymous not-quite-shabby feel of hospital waiting rooms and corridors. One of the things we came to recognise about dad was his ability to focus his energies for some upcoming non-mundane event he was looking forward to; the yearly village fete was one, family Christmas another. He could be “up” during the event for far longer than we all dared hope, but would crash the next day, totally exhausted. My heart goes out to Thompson, and the demands of sheer logistics, when it comes to bringing your best energy and mobility not just to touring — with all its timetabled rigidity and unplanned minor crises, and endless unglamorous lobbies and corridors — but to the pencilling in the necessary practice and rehearsal, all the concentrated unseen work that keeps your fingers and lips and responses in pitch-perfect trim for full unfettered creative flight. Especially when you also want to keep some of the best of yourself back, for private family time.

Mark Sinker, February 2012

1: the photo at the top was probably taken in 2001, by my mother perhaps 12 years ago, by my sister, Dr Becky Sinker, in North Wales: dad in his favourite jumper in one of his favourite places — and it captures his impishness, which wasn’t always there to see (Parkinsons leaves the face rigid and austerely expressionless a lot of the time).
2: the photo on the right is from June, 1960, the exact month of my birth, and some years before the condition had manifested: and he’s at the far right, a Vogue model teaching at Whixall Moss. (It may well not be Whixall Moss, but he often taught there, and this is how he looked wherever he taught in those days, the Field Studies Dandy.)

Naturalist and pioneering conservationist, Charles Sinker was director of the Field Studies Council from 1973-83, primary author of Ecological Flora of the Shropshire Region (1991), and editor of Hilda Murrell’s Nature Diaries (1987). He was diagnosed with Parkinson’s Disease in 1967 and would live with it for 43 years, with curiosity and fortitude, until his death in January 2010.