Parkinson's awakens hidden creative talents

Research published this week in the European Journal of Neurology has shed new light on the relationship between Parkinson's and creativity.

We hear from many people with Parkinson's who suddenly discover new creative hobbies after being diagnosed – including everything from drawing and creative writing, to sculpture and photography.

Our annual Mervyn Peake Awards celebrate the creative talents of people with Parkinson's and we receive hundreds of art, poetry and photography entries every year.

And the 'creative corner' on our forum is a popular place for people with Parkinson's to meet to share their poetry and stories.

The key to this new-found creativity may be a chemical messenger in the brain called dopamine.

People with Parkinson's don't have enough dopamine because nerve cells in their brain have died. And Parkinson's drugs, like levodopa and dopamine agonists, work by replacing or mimicking the action of dopamine. This helps to manage the movement symptoms of Parkinson's. But dopamine also plays other roles inside the brain, including creativity.

In this new research study, Italian researchers studied 36 people with Parkinson's - half had taken up new artistic hobbies since being diagnosed and the other half hadn't - and compared them to people without the condition.

The findings suggest that for some people, taking Parkinson's drugs can trigger the discovery of a new artistic interest but the 'ability' was probably there all along.

Have you discovered a new creative interest since being diagnosed with Parkinson's? Share your thoughts below or email us at pr@parkinsons.org.uk.

'In sickness and in health' Carers Week 2012 survey

The Carers Week survey for 2012 is out now. We need your help to make sure carers of people with Parkinson's are represented.

Please complete the Carers Week survey by the end of March.

The theme of Carers Week is 'In sickness and in health' and it's taking place 18-24 June.

The results from this national survey will help highlight the impact of social care cuts on the 6 million unpaid carers across the UK, particularly on carers' health and wellbeing.

Carers of people with Parkinson's have been telling us how much tougher they've been finding their caring role recently because of cuts to services. But we need an accurate picture of caring in the UK.

If you need a paper copy of the survey please email rebecca.couper@carersuk.org or call Donna, our social policy and campaigns officer, on 020 7963 9307 . Don't forget to tell other carers about the survey too.

Carers Week is a UK-wide awareness week to help bring the public's attention on carers and the issues they face. Parkinson's UK is one of 7 national partners this year.

Recent research showed that unpaid carers save the Government £119billion pounds a year, yet receive little support themselves. We think carers need more support and the replies to the survey will help build further evidence to present to politicians. The survey results will be released in Carers Week.

Carers Week is also a great opportunity for our local groups to organise events for carers or join in with other events happening locally.

Register any Parkinson's events you're planning on the Carers Week website and they will send you the materials to help you plan and promote your event. Carers Week events across the UK will be listed on the Carers Week website nearer the time.

We know that time is precious when you're a carer. But please do take time to complete the Carers Week survey if you can, to make sure people affected by Parkinson's are represented.

If you'd like to tell us your experiences of being a carer, email us at campaigns@parkinsons.org.uk

Exciting times for Parkinson's research in Europe

Our latest blog entry is from our director of research and innovation, Dr Kieran Breen, who has just returned from the launch of a European research strategy for neurology.

Earlier this week, I attended the launch of the Joint Programme for Neurodegenerative Disorders research (JPND) strategy.

This is an initiative, partly funded by the European Union (EU), to make sure research into neurodegenerative conditions, such as Parkinson's, is better integrated within Europe.

Parkinson's UK has been a key player in shaping this strategy and I represented the charity - as well as the European Parkinson's Disease Association (EPDA) - at 2 of the steering group meetings last year.

They also asked for details of the research that we are supporting, as Parkinson's UK is a major funder of Parkinson's research in Europe. In fact, we aim to spend at least £25million over the 5 year period 2010-2014.

The JPND research strategy highlights a number of priority research areas. These are the same as the Parkinson's UK research strategy launched in 2010 – disease pathology, animal models, drug screening and biomarkers. Maybe they 'stole' our ideas!

The JPND research programme aims to streamline research within Europe. While the EU will cover the administrative costs, the majority of the funding will come from the individual countries. So Parkinson's UK will have a great opportunity to be involved in some exciting new research. And, as a major funder of this type of research, we can help to shape the agenda.

I see this as a real step forward. It shows that the EU has a definite commitment to the study of neurodegenerative conditions, including Parkinson's.

And I think that this will be reflected in the 'piece of the pie' that will be available to us from the upcoming research strategy Horizon 2020. This will fund all areas of scientific research and is estimated to be worth up to €80billion in 2014-2020.

Over the coming months, you can be sure that we will be working hard to make sure that Parkinson's UK remains at the heart of research in Europe. This will bring us closer to our goal - to find a cure for Parkinson's.

Find out more about our research plans by emailing research@parkinsons.org.uk

Sad day for democracy

Yesterday the House of Commons voted to balance the deficit on the backs of people with Parkinson's, and other disabilities and long-term conditions, and voted to support the Welfare Reform Bill's cuts to the sickness benefit Employment and Support Allowance (ESA).

Worse still, the Government is using an archaic parliamentary rule to ensure that the Bill cannot return to Lords for any further votes, undermining the usual democratic process.

The main effect of the Bill is to limit contributory ESA for people in the Work Related Activity Group (WRAG) to 1 year. When the Bill was in the Lords they had voted to increase this to a more reasonable 2 years.

We think time-limiting a sickness benefit to one year is unfair to people with Parkinson's.

During the debate, when Dame Anne Begg was interrupted by noise from other MPs, she countered: "I'm sorry that you find all this very funny. The people with Parkinson's disease, the people with MS do not find this funny. It's their lives that are being undermined. It's them that will lack an independent income."

We couldn't have said it better ourselves, Dame Begg.

What does this mean for people with Parkinson's?

The year limit does not affect people who are in the Support Group (those who are not expected to work).

But many people with Parkinson's are in the Work Related Activity Group, where they are deemed capable of re-entering work subject to receiving a lot of support because of their condition. Only 6% of people in this group find work within a year.

The Bill also means that on the day of the introduction of this rule, in April 2012, contributory ESA will stop for many people who have received it for a year or more.

It may be that there are alternative benefits for people affected by this change. But entitlement to income-related ESA, or any other benefits, will depend on the circumstances of the claimants, and of their partners or spouses.

So anyone who thinks that this may affect them should seek advice now, from a Citizens Advice Bureau, or from our confidential helpline 0808 800 0303.

This time limit means that it's even more essential that everyone living with Parkinson's is correctly assessed for ESA, so they are in the right group for them.

We need evidence from people affected by the inaccurate ESA assessments – tell us your stories by emailing campaigns@parkinsons.org.uk