Talk Parkinson's blog wants your feedback

Talk Parkinson’s blog is nine months old!

We hope you’ve been enjoying our weekly updates and opinions on the world of Parkinson’s research, fundraising and campaigning.

But now we want to hear what you'd like to see on Talk Parkinson's and get your feedback on how we can make the blog even better.

We'd love to know:

• What posts have you found most interesting?


• What types of stories do you like to read the most: stories about people with Parkinson’s? New work we are doing? Comment on current media stories? Research progress or campaigning stories?


• What would you like to hear more about?


• Do you think we post frequently enough? Too much or not enough?


• What sort of topics would make you want to comment online or get involved in a discussion?

And we'd really like to hear a bit about yourself – do you have Parkinson’s? Are you a carer or friend of someone with Parkinson's? Or someone with another interest in Parkinson's information? If you want you can stay completely anonymous. It's up to you.

Please post your comments and ideas below. You can also email us on webmanager@parkinsons.org.uk With your feedback we can keep improving our blog and website and make sure our content is relevant for everyone affected by Parkinson's. Thanks for reading.

Reach your creative Peake

I am very excited to hear that the artist Mervyn Peake’s Gormenghast series is to continue, after the discovery of a new novel in an attic. Titus Awakes was written by Maeve Gilmore, the late wife of Mervyn Peake, shortly after her husband's death in 1968.

Sebastian Peake – son of Maeve and Mervyn and judge of our annual Mervyn Peake Awards - told The Guardian that reading the book for the first time gave him "a real kick in the solar plexus" and described it as "highly poignant."

I’ve always been fascinated by Peake’s work, from his exquisitely detailed Alice in Wonderland illustrations to his gothic feast of Gormenghast creations. Today his work is as illuminating as ever and his creative determination after developing Parkinson’s should be an inspiration to everyone.

The Mervyn Peake Awards celebrates the creativity of people with Parkinson’s through poetry, art or photography. Whether you are an experienced artist or you simply want to try something new, the Mervyn Peake Awards are the perfect opportunity to pick up your paintbrush, pen or camera and start creating.

You have until 31 March 2010 to complete an entry form and send in your artwork. I would thoroughly recommend that anyone with Parkinson's join this celebration.

Paul Jackson-Clark is the Director of Fundraising at the Parkinson's Disease Society

New insights into compulsive behaviour

We know that around 13% of people with Parkinson's who take dopamine agonists develop some form of compulsive behaviour. For some reason, these people experience the irresistible urge to do things that are often risky – like gambling, shopping, binge eating and hypersexuality - and can lead to desperate problems

This week I was fascinated by new US research published in the journal Neuron, which suggests that the brains of people who develop compulsive behaviour work differently, when they're exposed to dopamine agonists.

The research tested people with known compulsive behaviour like gambling or shopping. They played a guessing game while having their brain activity monitored. If they guessed correctly they got a 'reward'.

Their brains scans showed that when the people with compulsive behaviour won the game, they experienced a massive surge of activity in the part of their brain involved in reward and motivation. It almost fuelled their risk taking behaviour.

Understanding what causes compulsive behaviour is the first step towards finding ways to manage and prevent it.

We are currently funding a joint collaborative research project worth £640,000 investigating ways to identify people who may be at risk of developing compulsive behaviour, and finding more effective ways to manage it.

If you've experienced problems with compulsive behaviour, talk to your specialist nurse, consultant, phone our helpline on 0808 800 0303 or read more about compulsive behaviour on our website.

Dr Kieran Breen is Director of Research and Development at the Parkinson's Disease Society

New Year's resolutions - become a volunteer

Happy New Year! It’s the beginning of a new decade and what better resolution than making a difference to someone’s life as a Parkinson's Disease Society (PDS) volunteer.

When I travel throughout the UK visiting branches, I’m always impressed by both the efforts and results of all PDS volunteers.

One volunteer I spoke to recently told me he always found volunteering to be a ‘win-win’ situation – not only was it his way of giving something back, but it gave him an immense sense of purpose and kept him in a positive frame of mind.

Others said that by getting involved and meeting people they felt they were not alone with Parkinson’s and many fundraising volunteers have told me about the fun and amazing challenges they've experienced along the way.

Our volunteers work on committees of branches and support groups, take part in fundraising events, are members of our Research Network, help with Parkinson's education, catering, campaigning for better services and more!

If you want to find out about volunteering opportunities and how you can get involved contact Kathy Reay on kreay@parkinsons.org.uk

2010 is a very exciting time to get on board and make an impact. And with so many areas of work to get involved in, why wait?

Rachel Raymond is Director of Community Services of the Parkinson's Disease Society