Ten years ago, on January 30th, my life changed. It changed because a consultant uttered the words ‘you have Parkinson’s’.
In the months that followed, my marriage, my career, and my sense of self took an almighty battering.
Just over six years ago, I started to write, because I had struggled – and continued to struggle – to make sense of my condition. I reckoned others might have the same problem, and I hoped that by sharing I might be able to help both them and myself.
I had no trouble finding out technical stuff about Parkinson’s, this being the age of instant information, and at some points it felt as if I was finding out too much, too fast, especially during the process of diagnosis. But there was far less information on the way it makes you feel … especially when diagnosed at or before 40, what they term ‘early-onset’ Parkinson’s.
Bloggers such as Zalamanda, Jon Stamford, Colleen Henderson-Heyward, Viktor Tron and others have gone a long way towards redressing this balance, but I wanted to take it a step further.
The book pulls no punches. I try to talk to the reader the way I wanted people to talk to me, both during diagnosis and now. I didn’t want to hear people telling me how they knew I’d fight it, how I had to remain positive, how you couldn’t really tell, all that stuff. I wanted to confront the reality of the situation, so that I could find a way of dealing with it.
It’s been difficult to write. Some people have, and will, find it equally difficult to read. When I hear that someone’s reading it, part of me leaps for joy that they think something I’ve written is worth reading, while another part of me cowers in the corner.
Ultimately, I wrote it because I had to.
You can find reviews on Amazon and here.
If you want to read it, I’d be honoured. It’s available both as an e-book and a real, paper book. 30% of royalties goes to fund research into Parkinson’s.
Otherwise, pull up a pew, because there’s loads of stuff to look at while you’re waiting for the postman …
You can also read pieces which deal, either directly or en passant, with my experience of living with Parkinson’s Disease.
Living with early-onset Parkinson’s – published by the Wellcome Trust
Ten years a slave – reflections on a decade of parkiness
The Guardian Disability Diaries and interview
Indisability – on being invisible
You can tell by the way I use my walk
Vox pox – on the various permutations of voice and how PD silences them
Mental as fuck – on comments in the street
Slender Threads: the whys and the wherefores – on the reasons why I wrote my book.
On diagnosis – a contribution to issue three of Parkinson’s Movement e-zine
The Longest Wait – on diagnosis, published in the Independent 6 May, 2008 (online here)
Charity, celebrity and parkinson’s – on celebrity endorsements of disease
Care, not killing? Behave – on assisted suicide for those with non-terminal conditions.
Spit or swallow? – on one of the lesser-known symptoms of PD, difficulty in swallowing.
A day in bed – another mention of how rasagaline prevents the use of decongestants in the presence of a cold.
I think, therefore I … ooh, what’s that shiny thing? – on old-fashioned OCD and one of the lesser-known side-effects of medication.
Release the inner slut – this is a follow-up to my various posts on Love and other drugs
A little bit of what the fuck? – more on the trend for diseases to star in Hollywood vehicles
A la recherche de temps perdu – on the past, the present, and the need to move beyond
Love and other drugs – also in Prospect – see also director’s cut – on the recent Hathaway/Gyllenhall vehicle which has PD as a leading character
It never reins – shopping, king lear, and seeing someone with PD
Whole lotta shakin’ … not going on – on visiting an old guitar student, and finding out how PD has affected my playing
Oh Helen, Helen … please fuck off – A response to the crassness of Helen Mirren and Nintendo, on the announcement of a research project on whether the Wii-fit can help with PD
Cartesian, moi? – on the slow but steady divorce occurring between my mind and my body
hot lemon and hopelessness – This was written on the evening of the September 7, 2009, I think. The title stems from the rather obtuse fact (and oddly enough, one which I utterly fail to mention, which at this juncture confuses me somewhat) that the new drug I was prescribed prevents me from taking lemsip when I have a cold. Really. How utterly mundane is that?
Wow, that is stunning the immer flashy and brilliant yet akward (for non students) mr Pete Langman, i’ve found you on the net and read this… wow the force is strong in this one wonderful, i put it in fav. and find my time to read about it, your goals and achievements and life after we seperated back in somewhere May ’95 when i gratuated from GIT London and became a teacher in the art of music and we both moved along.
how you handle this as you handle the guitar is a great inspiration.
All best in everyway, greetings your Dutch student Martijn.