The Agonists and the Ecstasy

At this moment, my body and brain are shutting down. It’s 2.45pm. I need a nap. This is partially because I suffer from chronic insomnia (and have done for well over a decade), and partially because I am simply exhausted. I’ve had breakfast, indulged in some domestic drudgery, been shopping, had some lunch and had a short twitter with a friend on the demon drugs that are called dopamine agonists. Continue reading

14 Pieces of Parkinson’s

In celebration/commemoration of the fourteenth anniversary of my diagnosis with Parkinson’s Disease, I re-published 14 articles of mine, one a day for two weeks. Here’s the countdown!

1. Ten Years a Slave – I wrote this on the tenth anniversary of my diagnosis, and it includes extracts from Slender Threads. As such it’s an interesting snapshot of strange times.

2. The Longest Wait – A piece I wrote for The Independent in May 2008, a few months after my diagnosis. It’s all about the future, of course, it’s just that the future is now. I wrote no. 2 of my 14 pieces of Parkinson’s for the Independent in May 2008, a couple of months after diagnosis. It’s about the future as it appeared at the time. Also here. 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

A sword with four edges

To misquote Francis Bacon:

It is generally better to deal by radio than by print […] print is good, when a man would draw an answer by print back again; or when it may serve for a man’s justification afterwards to produce his own writing.

Radio, instantaneous and far-reaching it may be, but it still is a dangerous medium, as your reactions must be instantaneous, and correct first time. There is no room in the editing suite for the guest, no track changes, no jolly sub-editor polishing your answers to a high gloss. The weighting is very taxing, as while you may know the first question, after then it becomes more free-form, and commensurately more dangerous. Continue reading

Love and other drugs – director’s cut

This, for those of you with obsessive tendencies, is my cut of the original. It is the pre-Prospect edition, and has several interesting differences, some of which ought to have been kept, some of which were rightly excised. It is a little ranty, but hey – what can I say? It serves its purpose.

Allow me to introduce myself. I am Anne Hathaway. Improbably hot, irresistible, obsessed with sex (and not because I don’t get any – trust me); far beyond loathe to get close to anyone, or to let them get close to me.

Wait, one more thing. Oh, that’s it, like her character, I have early onset PD. Not as early as hers but hey, give me a break here. Cards. Meet table. Ace up sleeve? I wish.

I haven’t seen the interviews where Hathaway bangs on about the film’s ‘message’ – had I done so, I might not have seen what I saw. As it was, I was expecting something very different. I could write about symptoms, the clumsy way they show the tremor (they show the clumsiness better), but anyone who knows anything about PD will tell you that both symptoms and progression are quite personal.

I walked into a lit cinema populated by coupled-up students and giggling, texting gaggles of girls. I felt astonishingly conspicuous. A 43-year-old man, on his own at romcom in the afternoon? I wanted to shout ‘I’m here for the drugs, not the love’, or maybe, ‘Me and Anne …’

I expected a crass, exploitative, romanticised version of the shit that hits on diagnosis and then dissemination. I was in danger of recreating the extended version of Freud’s kettle joke: ‘Fuck you and your kettle!’

Sitting alone in a cinema is a passable imitation of the mental weight of PD. I desire secrecy and revelation simultaneously. Isolation is insulation. Everyone looks, but no-one sees … it’s an odd, not out-of but hiding-inside body experience.

The film suffers from an inability to decide whether it’s a serious drama, a romcom, or a teen flick. Four Weddings and an American Love Story. It has many, many flaws, but whoever wrote the damn thing got some stuff spot on. For me.

Hathaway’s character is a slut, albeit one who paradoxically fucks only one man at a time, or so it appears. Her seduction line, apart from ‘shall we?’ two minutes after sitting down for coffee, is simple: ‘for you it’s not the sex, but an hour or two to relieve the pain of being you … that’s all I want too.’

Without putting too fine a point on it, I know how she feels. Add this desire to the side-effects of the dopamine agonists (in the rare category: compulsive gambling; compulsive eating; compulsive sexual behaviour. Let’s just say I’m still in great shape and my bank account is healthily in the black), and well …

Yes, the love story clunks, yes the sub-plot is crap, yes it drips sanctimony, at times it’s nauseating, it’s flawed, but get this – at points, I cried. Truly. Not for the fucking characters (get real) but for me.

This disease destroys the most important part of you, your sense of self, and your sense of self-worth. Now, nothing provides self-validation and insulation like like a few hours of frenetic sexual activity. Sex makes me feel that I can, while taking me apart from me. Being inside another body makes me forget mine, and its insufficiencies, inabilities, inadequacies. At some point, PD will probably render me impotent. Cheers.

Like Hathaway’s character, I have done everything I can to avoid getting attached, refused to call anyone my girlfriend, shrugged off the boyfriend tag, and sure as hell haven’t told anyone I love them (at least, not when it could have led to anything – oops). Why the fuck would anyone want me, who in ten years may well be a gurning, incontinent idiot? Children? Fuck off.

Yes, I’m ranting. I’m furious. Furious that while some of these points were dealt with quite beautifully, they were wrapped in a teen movie wrapped in a romcom. The rake (me) falls in love with a fragile, broken woman (er, also me) and heals her soul. Why so furious? Well, it’s ridiculous that they could sum up my life so well – PD has led me to live in a way that’s part farce, part black comedy, and yes, part Russian novel.

But there will be no happy ending. I am not getting better. I am getting worse, and will continue to do so.

Fuck, fuck, fuck.

That seems to be the most effective short-term therapy. Unless I can find someone who will do more than ‘pity fuck a sick boy’, without trying to own my disease, tell me about all those wonderful cures and therapies, and trying to heal my fucking soul. That I’ll let in.




Hot lemon and hopelessness

Just write something, she says. Five hundred words. Interesting, I think to myself, there are prescriptions already. Don’t edit yourself.

An interesting lunch was presaged by a rather strange walk through town (and now, conscious that I’m under instructions not to edit, the stream of consciousness is subject to a series of locks, though which my prose is gently carried uphill, against all logic). It wasn’t the astonishing lack of patience I currently show towards mankind in general – after all, I have a cold, and snat and sneezed my way through the crowds – but the habits we form that become obsolete and are yet hung onto.

She wants me to write about my experience, about my disease. Because it weighs more heavily upon me than I admit, she says. I know people in much worse positions, I point out, but she’s insistent. And though I hate to admit it, she’s right, up to a point. Damocles’ sword may well have been an absolute pisser, but he knew what he was dealing with. Me? Potential. Possibility. What can I lay at the door of the disease? What at the drug? What at middle age?

A friend recently said he thought I was being more protective of my left arm. Sharp man. I certainly notice more bad days than I used to, days when my left hand is beyond recalcitrant. But with the drug I take suggesting that immediate cessation of treatment may lead to coma, it’s difficult to say where it’s at. Last time but one my specialist (who was looking peeky) suggested I take the ‘levadopa challenge’. Sounds like climbing an ancient hill fortress. He described it as a ‘battery of tests’ on gait and fine motor control. Oh, but the drugs tend to make people vomit, so best you take an anti-emetic – and stop the dopamine agonists the day before. (Remember? Coma?) Naturally, the anti-emetic is a dopamine agonist. I’m confused now.

So. They’re testing my brain. The waiting room is, get this, in one of the neurology wards. Yup, that’s right, you’re there waiting for tests to see how bad your brain is getting, and someone wonders in (and yes, I mean wonders) and starts talking to me as if I’m an old friend. Naturally, I converse politely and pointlessly with this woman who seems to have a five minute reset button. Every five minutes or so, she starts again. I continue being polite while my brain (the broken bit) screams ‘fuck off you mad bitch’ over and over. But she’s not mad. Merely broken. Like me. Which is why I’d really like her to fuck off.

Eventually, she does. Are you mr langman (dr fucking langman, it screams)? Yes. Will you follow me?

Ah, battery of tests. Intellectual curiosity. Should be interesting. She stops me in the corridor, puts a piece of red tape on the wall. Can you see this? (hello?) Wait here. When I call you, walk towards me. (woof?) This I do – though she has to tell off a disgruntled porter. Then she writes on her clipboard, points at the tape on the wall, walks back to where we started … and that’s that. It’s not that severe, she says, almost disappointed. Then she leads me back to the waiting room. Pardon?

I sit. She takes a piece of A4 paper from her bag. It has two biro dots about half a centimetre in diameter on it. I am to touch each one in turn. For a minute with one index finger, then the other. Take this, she says. (is that fucking it?). Three quarters of an hour later we do the whole pitiful charade again. I comment on how difficult it is to remain natural when you know what the test is noting. Are you trying to do it quicker? (God, you’re dumb). No, it’s just that … oh, never mind.

I walk out furious. What an utter waste of time. I get to the parking machine, stick my ticket in, grab some change and feed it. Jump in the car. Storm off.

Hang on. That was my left hand. I can’t usually get coins out of my left-hand pocket, let alone sift them with the left-hand only. Christ, this leva dopa shit damn well works.

So, I’m walking to lunch. I hold my phone in my pocket so that I can feel it ring or if a message comes through. I pull it out to look at the time. One missed call and one message. I switched off the rings etc so I can use it to time lectures. Because I left my clock at a friend’s. I’ve rather enjoyed not knowing when a message has been coming through. The phone is now a potential message every time I look at it. Just like I’m a potential new symptom every time I look at myself.

And I look a lot.

© Pete Langman 2009