On Tell-Tale Signs

I was diagnosed with Parkinson’s (of the ‘Young Onset’ variety) back in the heady days of 2008. Back then I wrote an article for the Independent called ‘The Longest Wait’, so titled because Parkinson’s was, to me, then a disease of potential – I knew many of the things it might lead to, but there was no clear timeline. The general consensus was something along the lines of ‘another five decent years, then a few more of decline, then a final few years of utter shite.’ Happily, this has not turned out to be the case. While the progression of YOPD is still relentless, it is in no way as was thought. On a good day, you still wouldn’t know. In many ways (and this is primarily due to the delights of leva-dopa), I’m better than I was a decade ago. But I’m not here to talk about all that. I’m here to talk about stranger things.

My diagnosis came about because, sometime around my 38th birthday (2005), I decided it was time to pick up my electric guitar once more. I had started at age 15, and was a pro by the time I was 21. In 1988 or 89, I started teaching at the Musician’s Academy in Wapping, later to morph into MI London. My first students were all older guys (they outnumbered women by about 20 to 1) who had played in their youth, done the family thing and now had some extra time and money. Good god, the gear! Anyhow. I spent the next decade as a jobbing guitarist/teacher. I never got the gigs, but I did have a tuition column in Guitar and Bass magazine, so I wasn’t too bad … I quit in 2000, primarily because the anxiety and depression and other shit (which I hid mighty well, and which I now realise were most likely early symptoms) became overwhelming to the point where I couldn’t perform. I spent the next seven years at university, eventually gaining a PhD. For the first five of these I literally didn’t pick up a guitar.

Then, one day, I did. And it felt … wrong. At about the same time, I started getting hit while sparring (at karate) by people who had no business laying a finger on me. That and my form while doing my kata was off, usually in the left hand. I sought medical help. This got me nowhere until, at a family gathering, I was doing my usual ‘this is why I no longer play guitar’ (which involved wiggling the fingers on my right-hand and then my left – see video) when my late uncle (an eminent professor of medicine) ushered me over and said ‘you need to see a neurologist, old boy.’ Within a year, my life changed. And continued to do so as symptoms linked arms with therapies, frog-marched me to the top of various hills to show me the view and then pushed me off.

Cut to 2024. Over the past decade and a half I’ve written a lot of words (quite a few of them published), played a lot of cricket (quite badly), and had a lot of experiences of other sorts. I even played a gig on my 50th birthday (with mixed results). As my writing habit ground to a halt (following in the shuffling footslides of my short academic career), the feeling that I had left something undone in music grew. And so, last week, I decided I needed a new electric guitar to play during my regular visits to Leiden (where my partner lives). Having misread the time zone of a dental appointment, I visited a guitar shop and found an instrument that I rather liked. I took Nadine to see it the next day but miscalculated – by the time we got there I was so off I looked more like a penguin than a human, a problem exacerbated by the crowds perusing the market. We tried again the next day, with more success, but the instrument didn’t balance quite right (and I have enough trouble playing without having to wrangle the guitar), so back to the drawing board. We visited an Amsterdam shop recommended by an ex-student (thank you, Petja – you’ll be able to hear Petja on P. Rex from Dancing with Architects when it’s finally released). There I played something like 15 guitars before finally settling on the one in the video. It wasn’t what I expected to end up with, but always have an open mind, right?

Yes, it’s pink.

My attitude to guitars (and this is only the fifth electric I’ve owned since I started playing in 1982 – I still have the second one I bought, in 1984) is that I don’t much care what they look like, whether they’re ‘mint’, ‘all-original’ or whatever. A guitar is an instrument – it’s there to negotiate the moment the music inside you caresses (or otherwise) the air molecules that surround you, that take it to the (hopefully consenting) ears of others. A guitar must ‘speak’ to you when you pick it up. It must almost force you to play it. It should be an irresistible temptation.

But it’s been so long I don’t trust my instinct any more. How the hell can I, a parky whose fingers fumble with forks and have catastrophic interactions with coffee cups, expect to be able to feel the instrument as I used to? So I asked Nadine:

‘Which one do you think?’ I said.

‘I know nothing whatsoever about guitars, but that one.’ She replied.

‘Why?’ I asked.

‘Because when you picked it up, you smiled.’

Reader, I bought it. This is me playing it. What comes next? Who knows, but also, who cares, so long as I’m smiling, right?’

Pete guitar 1

(excuse the filthiness of the playing, but, well …)

Am I the 5%?

‘Who’s there?’
So begins the single greatest investigation into the human condition, Hamlet. Shakespeare lets the audience know what both Hamlet the man and Hamlet the play are about in its very first line, and its reputation is such that in the modern age, Hamlet’s discovery of himself is now mirrored by the actor’s finding of his or her Hamlet. It is the ultimate test of an actor’s craft, to inhabit a character no ones agrees upon: to convince the audience that it is they who show him as he really is, that Hamlet shows them the actor they really are. No other character in fiction has quite this hold on the imagination, because no other fictional character is quite so true. Continue reading

Forgive me, father …

Forgive me father, for I have sinned. It has been four years since my last confession. That is to say, since I last wrote a word of creative fiction. It was four years ago that I submitted my novel, Killing Beauties, a work of historical fiction based largely on the real lives of two seventeenth century women, to my publisher. It failed to set the world alight. I think it sold four copies in 2022. And yet I call myself a writer.

Continue reading

Gladiators, Ready?

Available now on SPOTIFYAPPLE MUSICTIDAL

‘More chops than a butcher’s shop’Phil Hilborne, UK guitar legend

‘This kicks ass’ – Jamie Hunt, One Machine, BIMM, Guitar Techniques

That’s right, it’s my new/old single, all proceeds to Spotlight YOPD. Here’s the story: Continue reading

An Apple a Day

Since the beginning of the coronavirus outbreak, and especially since it began to make its mark as the shelves of nation after nation were cleared of toilet paper, there has been one constant: the internet has been a greater spread of dangerous misinformation than any other source. One wonders how the virus managed to achieve such mastery of social media in such a short time. But it doesn’t have to be this way. The internet, or more specifically the global network of gps satellites and mobile phones, can do something extremely positive. Continue reading

shhh … it’s a post about sex and Parkinson’s

So. All caveats and disclaimers apply. This is a piece I wrote a while ago but couldn’t quite post … it’s about the venn diagram of sex, dating, and Parkinson’s (and its medications) … hold very tight please …

Dating with dopamine

You know when she’s on the brink. There’s a short pause, then a nervous intake of breath. It’s not sharp, not this time: more like the slow traverse of an unshod foot over an uncertain pathway in the dark. The atmosphere thickens, resisting inhalation, but once it’s been sucked in, there it stays. Her breath held, your own bated in sympathy, it happens. Continue reading

Indisability

A funny thing happened on the way to town the other day. No-one batted an eyelid as I wandered through the packed streets of Brighton, the wee, bijou ones they call the Laines. This may seem a little self-regarding, but I usually have to deal with swathe of subtle and not-so-subtle staring. It’s not, sadly, due to my unfeasibly handsome visage, nor to my burgeoning fame. It’s all about the way that I walk. The looks start at my feet and end at my eyes, as if it is here the answer lies, as if the eyes will explain. As if the eyes will be cold, lifeless, the eyes of the undead. Continue reading

I have something to tell you …

‘You have Parkinson’s Disease.’ These words, once uttered, change everything. Even though many PWP already ‘know’, or at least have deep suspicions about what ails them, these words uttered by the representative of the medical world confer patienthood. It is these words that make you ill: it is these words which legitimise your symptoms; it is these words which stamp you irrevocably with the label ‘patient’. Words are transformative, and these words of diagnosis are poetry in the highest, purest sense: poetry is a word derived from the Greek poieo: to make.
And they say that words will never hurt you. Continue reading

Vox pox

(First published in Parkinson’s Movement 2013)

Many years ago, I was at my parents’ house when the phone rang. Naturally, I answered it. On the other end I found an old family friend, whose voice I recognised immediately. ‘Hello David’, she said. ‘Ah, no, it’s Pete’, I replied.’ ‘Very funny, David.’ ‘It’s not David, it’s Pete.’ A small pause. Some repetition. Eventually, she became rather irate. ‘Look, David’, she said, ‘I’m getting very tired of this …’ She would not accept that my voice was not that of my father, they were so similar. Several years later, on the day he died, the phone rang once again. Continue reading