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

Was it the drugs, or was it the parky’s?

So, the question is whether we ought to read carefully, or just the headlines.

Parkinson’s UK posted this article today on the supposed link between Parkinson’s and creativity. It was the third paragraph before these words appeared: ‘The researchers spilt [sic] the people with Parkinson’s into 2 groups and found that those who took more Parkinson’s medication were the most creative.’ Continue reading

Parkinson’s and creativity

This is a piece a wrote just over a year ago, and I’m going to reproduce it here:

Creativity and Parkinson’s. A contentious pairing of a much-argued ‘gift’ and a disease that rots your brain in an extremely precise manner. They are inextricably connected inasmuch as the fruits of creativity vary wildly in their quality, just as the wholesale slaughter of the basal ganglia seems to produce wildly varying symptoms in each individual. There’s obviously a massive problem with attempting to gauge the true relationship between the two, namely the necessarily subjective nature of assessment. How does one measure creativity? 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

In control?

I’ve already written this post three times this morning. In fact, I’ve written this post dozens of times over the past few years. What is it to be in control? This was one version:

As I sit, cross-legged on my bed, laptop atop my lap (as it ought to be), listening to the rain beat against the roof, waiting for the plumber to arrive, checking social media for, well, anything to distract me from the task at hand, I’m less concerned with being ‘in control’ than I am wondering what it means. Continue reading