Creative release: how writing can be used as a Parkinson’s therapy

Christy McGhee  December 13, 2017

Children’s poet John Foster tells the EPDA about working as a professional writer and performer with Parkinson’s disease, and how deep brain stimulation helped give him his life back.

Writer, John Foster

John Foster is a successful children’s poet and book editor, who lives in Oxfordshire, UK, with his wife Chris. Since the former teacher was diagnosed with Parkinson’s in 2005, he has continued to write books for children and perform his work in schools. His latest book, Christmas Crackers, is available to buy now.

How did you get into a career as a poet/editor?

I started off as an editor of poetry books, and started slipping the odd poem of mine in. I gradually wrote more poems and eventually got six of my own poetry books published by the Oxford University Press. Some people set out to become children’s poets – I sort of fell into it because of my editing.

I wanted to do a book in aid of Parkinson’s to give something back

You were diagnosed with Parkinson’s in 2005 – what happened?

I had become quite depressed and had developed a tremor in my right hand and arm, so was referred to a neurologist. I didn't swing my arm when I walked, and my handwriting had become smaller. Together with my facial expression and the tremor, he diagnosed Parkinson's. It was a tremendous shock – I was told very badly.

The doctor told me to retire and do what I wanted to do while I could. But what I wanted to do was carry on writing and performing. I began to take medication but the tremor grew increasingly worse over the years until I was offered an operation – deep brain stimulation (DBS).

Tell us about your DBS experience?

I was still going into schools and telling the children, ‘My right arm shakes, take no notice of it’. But it became so severe after five years that I was at the point of giving up. It was suggested I could be a candidate for DBS. I had to go through several hoops, including psychological tests, to make sure I was suitable.

For me, the choice to have DBS was easy because I had such a severe shake and my doctor had done many operations. I had a Parkinson’s nurse with me while the operation was carried out, because you had to be awake to make sure they had the electrode in absolutely the right place. The anaesthetist was brilliant: I was sedated and he brought me round enough for me to be able to shake or not shake when they put the electrode in the right place.

The effect was to give me my life back. It has improved day-to-day life at home, and it has enabled me to continue to visit schools and continue writing.

As well as an electrode in my brain, there’s a battery in my chest. Mine has been going for six years and will probably need replacing next year. I believe you can now have a battery fitted that can be recharged from outside the body.

Have a go at writing, because it can be a therapeutic release.

How has Parkinson’s affected your creativity?

I gave up teaching 30 years ago to write full-time, and have certainly been more creative since being diagnosed, as it has enabled me to have more time to write my own poetry. Whether this increased creativity is actually a result of my Parkinson's is very hard to say.

What other kinds of writing do you enjoy in addition to children’s poetry?

Over the past four or five years I’ve written several books for primary school teachers. I’m technologically incompetent but I’m thinking of starting a blog, probably about poetry. I have written about my experiences as a person with Parkinson’s in a book called Shaken But Not Stirred, edited by Alex Reed, the director of the European Parkinson Therapy Centre. I’ve also written several poems about having Parkinson’s, one of which I read at Christ Church Cathedral in Oxford last year at a concert in aid of Parkinson’s.

You’ve recently self-published a book called Christmas Crackers – tell us more

I wanted to do a book in aid of Parkinson’s to give something back to all the people who have been involved in treating me.

I’d written a couple of silly Christmas poems and so I thought I might do a Christmas book. It was [The Vicar of Dibley] writer Paul Mayhew-Archer’s idea to have separate illustrators. I called in a lot of favours – all the people who illustrated Christmas Crackers had illustrated books of mine in the past. I was able to get Korky Paul, who is renowned for Winnie the Witch, and cartoonist Gerald Scarfe, whose brother has Parkinson's, to contribute illustrations. The book just came together and it’s sold very well. It’s raised £4,500 and I’m hoping to raise another £2,000 this year, all for research at the Oxford Parkinson's Disease Centre.

What advice would you offer to anyone with Parkinson’s who is thinking about writing poetry (or self-publishing) to share their experiences?

I would advise them to self-publish rather than to try to find a publisher as it’s very difficult to break in, particularly with poetry. There is lots of advice on the internet but avoid vanity publishers (where the author pays for the book to be published).

Do have a go at writing, because it can be a therapeutic release. One of the difficulties of coming to terms with the condition is you have to decide to tell people about it or not. Some people look inwards and don’t talk about it. So they could write about it instead, without having to face up to someone in a social situation; in that sense, writing about it can be helpful in coming to terms with it.

What creative ventures do you have planned for the future?

I have two more poetry books coming out in 2018: Don't Stand Under a Flying Cow in the Potty Poems series, published by the King's England Press, and Eggs with Legs, illustrated by Korky Paul, published by Troika.

http://epda.eu.com/latest/news/creative-release-how-writing-can-be-used-as-a-parkinsons-therapy/