living with parkinson’s

Five 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 a year ago, I started to write my story, because I had struggled – and continue 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 …

slender threads cover final

You can also read pieces which deal, either directly or en passant, with my experience of living with Parkinson’s Disease.

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.

The gift of choice

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?

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