£5million to help find a cure for Parkinson's

Dr Kieran Breen This week a large grant-making trust has donated £5million to fund truly groundbreaking research into Parkinson’s. It's the biggest donation we have ever received.

When the trust initially approached us, it gave us an opportunity to step back and reflect on how far we have progressed in our goal to find a cure for the condition.

It’s true to say that while there have been great leaps forward in our understanding of how Parkinson’s develops, and how we can better treat the symptoms, we still don’t know exactly what causes Parkinson’s in the first place.

The Monument Discovery Award is different because it brings together different strands of leading scientists and clinicians involved in Parkinson’s research, who are passionate about a single goal – to discover what causes Parkinson’s.

By understanding the fundamental reasons why people develop Parkinson’s, we can accelerate our search for a cure and make our aim of ending Parkinson’s a reality.

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

Compulsive behaviour in Parkinson's

Val BuxtonAn article in the Daily Telegraph this week illustrated the huge impact that compulsive behaviour can have on the lives of some people with Parkinson's.

Compulsions like binge eating, gambling and irresistible sexual urges have been associated with some Parkinson’s medication, particularly dopamine agonists.

For most people who take them, these drugs are very helpful, but research suggests that for around 14% they may be associated with behaviours that can lead to considerable distress, both for those affected and the people close to them.

Earlier this year I came across a man whose wife watched his personality change from within months of taking the drugs. He became violent, angry and bitter, with an increasing libido and interest in 'inappropriate' sex. He eventually moved out, had an affair and was arrested for a violent attack on his new girlfriend.

Eventually, a new consultant nurse adjusted the medication. His personality has now returned to normal - and he's back with his wife.

This man was unaware of changes in his personality, so it's crucial that both people with Parkinson's and their family and friends are alert to what can happen and tell the specialist nurse, GP or consultant as soon as possible. Medication can then be altered professionally.

For anyone affected, confidential advice and support is available from the Parkinson's Disease Society's freephone Helpline 0808 800 0303

It’s really important for us to raise awareness of this issue, so if you have a story you would like to share, please email us at pr@parkinsons.org.uk

Val Buxton is Director of Policy, Campaigns and Information at the Parkinson's Disease Society

Working together to improve clinical research

Dr Kieran Breen This week, the Dementias and Neurodegenerative Diseases Research Network (DeNDRoN) – who work to coordinate clinical trials – held their annual conference in Southampton.

DeNDRoN was set up in 2005 to support clinical research into neurodegenerative conditions like Parkinson’s. Clinical trials are essential for testing new treatments and they will play a vital role in finding a cure for the condition.

People living with Parkinson’s have a crucial role to play. Not only in taking part in trials, but also in shaping the design of clinical research studies. Involving real people helps make research more relevant and more efficient.

A packed programme explored how healthcare professionals, researchers and people affected by neurodegenerative conditions could work together to improve the quality and speed of clinical research.

Claire Bale and Michelle Bendix from the Parkinson’s Disease Society (PDS) research team along with researchers currently funded by the PDS and people with Parkinson’s, spoke with representatives from DeNDRoN about how to make Parkinson's research more effective.

We want there to be easier ways for people with Parkinson's to get involved in research and working closely with organisations like DeNDRoN will help this happen. We can't do it all by ourselves.

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

Campaigning at Tory Conference

At the Conservative Party Conference in Manchester this week, representatives of our Policy and Campaigns team, along with Richard Brown who has Parkinson's, met with MPs and Shadow Ministers to discuss issues affecting people with Parkinson's. They also talked to other charities about the work we can do together to influence policies.

Anjuli Veall, Andrew Lansley MP and Clare MoonanAnjuli Veall, Social Policy and Campaigns Manager (left) and Clare Moonan, Health Policy and Campaigns Manager (above right) spoke to Andrew Lansley MP, Shadow Secretary of State for Health (centre) about the Fair Care for Parkinson's Campaign.

Ken Clarke MP and Richard Brown Richard Brown (above right) talked to Rt Hon Ken Clarke MP, Shadow Secretary of State for Business (above left).

Anjuli Veall in the MS SimulatorAnjuli Veall tried out the MS Society's 'MS Simulator'.

Mike Menning MP and Richard Brown Richard Brown spoke at our fringe event about his experiences living with Parkinson's, and was joined by Mike Penning MP, Shadow Minister for Health (left) who talked about his plans to eradicate the postcode lottery for health and social services.

Emily Cogbill, Mark Simmonds MP and Clare Moonan Emily Cogbill, Parliamentary Officer (above left) and Clare Moonan talked to Mark Simmonds MP, Shadow Minister for Health (centre) about research into finding a cure for Parkinson's. They also spoke with Anne Milton MP and Stephen O'Brien MP, Shadow Ministers for Health.

The Conservative Party conference ended yesterday, but the media is still debating the Party's announcements on incapacity benefits and NICE guidelines. If the Conservatives were to win the general election, these policies could have a huge impact for people with Parkinson's.

Tina tackles MPs in Brighton

Tina Walker, Parkinson's Disease Society member and Chair of the Younger Parkinson’s Network brought the voice of people affected by Parkinson’s right to the heart of the Labour Party Conference this week.
Tina Walker and Andy Burnham MP
Tina, who has Parkinson's, spoke powerfully at our packed fringe event, telling MPs and Party members about the difficulties people with Parkinson’s can face getting the services they need.

During the conference Tina managed to talk to every single member of the Labour health team about Parkinson’s issues. She shared a platform with Minister of State Mike O’Brian, raised research funding with Public Health Minister, Gillian Merron, and discussed the importance of good social care with Care Minister Phil Hope.

She extracted assurances about taking forward our Fair Care for Parkinson’s goals from Ann Keen, Under Secretary of State, and even got the ear of Andy Burnham, the Secretary of State himself (pictured with Tina above).

Jonathan Shaw MP and Tina Walker Tina also tackled Work and Pensions Minister Jonathan Shaw (pictured left) about problems with Employment and Support Allowance.

The warm and positive response Tina got from Ministers showed how crucial people’s first-hand experiences are in getting our message across.

That’s why it’s so important that as many people as possible sign up to our National Campaigns Network –so we can really make sure that people with Parkinson’s get heard and can change things for the better.