Parkinality Poet Julie Walker: Spreading awareness of Parkinson's disease through verse
Julie Walker, who is 50 and lives in Bishop's Stortford, writes for the Indie about living with early onset Parkinson's disease...
3, 2, 1... and I’m back in the room. It’s been a few weeks since my last column. If I've read you a poem recently, then please relax with a slice of chocolate cake while I explain to everyone else what I've been up to.
When I think back to diagnosis day, almost seven years ago, I had just completed a part-time degree with the Open University (2:1 BA Hons... you may clap) and was planning a return to part-time work. I discovered whilst typing essays for my degree that I had early onset Parkinson’s disease (PD).
I listed my random symptoms to the neurologist, including problems with my left arm and leg whilst tap dancing, using cutlery, swimming and typing (not at the same time, that would cause problems for anyone).
After a few simple physical tests, early onset Parkinson’s (diagnosed before 50) was diagnosed. I realised that colouring in a diagram of a volcano in year one science wouldn’t equip me to cure PD, but I was a woman on a mission –had to do something.
Already worried about returning to work, the addition of a degenerative neurological condition reinforced that concern. So I threw myself into fundraising and volunteering for Parkinson’s UK.
At Parkinson’s UK, I, along with others living with PD, had an input into everything from the wording of posters – I personally don't like being called a 'sufferer’ – to meeting researchers to demonstrate how PD is in real life, i.e. not just cells in a Petri dish.
I quickly realised that spreading awareness, both within and outside the PD community, was something I could do. It would help people understand why people with PD are unreliable and unpredictable.
It might also, in a tiny way, help speed a cure if people knew the life-changing effect a PD diagnosis has.
So, with no real writing experience, I started a blog, which led to this newspaper column. I am now writing and performing poetry, which has led to me publishing The Parkinality Poetry Book.
The book is another way of spreading awareness. It is not all about Parkinson’s disease, that would be dull, but it is woven into the book like a Parkinson’s rubbish undercover agent – I like to call it ‘information by stealth’.
All the poems are original and written by me. Many will make you smile, some are sad and some baffling. They are about fictitious people, with their fictitious foibles, living their fictitious lives (did I mention it is fictitious?).
It has taken around 18 months to write and publish, and I am now planning how I am going to promote the book. The key word here is ‘planning’.
Imagine you planned to take Tibbles to a cat show (bear with me). Registering attendance six months earlier, you thought you had planned for every eventuality and had done everything to try to ensure that on the day you and Tibbles were on time and tip-top.
However, on the day, Tibbles decides to chase a feather round the room and then hide up a tree. Tempted down with cat bribes, Tibbles then refuses to get into the cat box; legs rigid and paws balanced on the edge of the box.
Finally, after negotiation, bribes and a tiny bit of patience, you (and Tibbles) get to the cat show late and slightly dishevelled. PD is like Tibbles but without the agility. Both are unpredictable and neither keeps a diary.
So, I am planning a couple of events to promote the book. The first is on this Sunday (August 18) from 1pm to 3pm at the Twisted Cellar in South Street, Bishop’s Stortford.
Although I am unlikely to be hiding up a tree, you will have to take me as you find me. I will plan meds, food, sleep etc in order to give me the best chance of being tip-top – but no-one knows what PD will do (not even PD).
Please pop along for some pot-luck poetry reading, some snacks and chat. There will also be a charity raffle in aid of Parkinson’s UK and The Cure Parkinson’s Trust.
Okay, I’ve finished blowing my trumpet and it has been locked away.