World Parkinson Congress: Exercise, laughter and more powerful stories

Another busy but enlightening day here in Glasgow.

In today’s early morning session, Professor Bastiaan Bloom spoke about why he feels patients are crucial in managing response fluctuations with Parkinson’s and looked to how technology will have an increased role in the future. He said: “I think in the future, patients will be wearing sensors – perhaps on a wristwatch – recording whether patients are on or off and predicting if they might have excessive movements or dyskinesias in 10 years time.”

Later on, Liz Wolstenholme, one of our trustees talked movingly about taking charge of Parkinson’s in her session this afternoon. She urged delegates to realise how empowering the act of sharing each other’s stories and experiences can be in dealing with Parkinson’s.

We were also at a workshop on exercise and Parkinson’s led by researcher, Giselle Petzinger. Giselle discussed her innovative research that explores how exercise can change the way the Parkinson’s brain works. Her work strongly suggests that exercise training helps the brain to use dopamine (the chemical lost in Parkinson’s) much more efficiently. Fascinating stuff.

Ex-pro cyclist and person with Parkinson’s, Davis Phinney spoke passionately about the power of exercise to improve quality of life for people with the condition. He said: “'I could sit around and wait for a cure, but waiting is so passive, exercising means I can improve my life right now."


Speaking of exercise, as you can see from the picture, above, our Nintendo Wii stand continues to draw in crowds eager to have a go and let out their competitive streak! And a lot of fun was had by everyone who attended Bob Taylor’s fantastic laughter workshop.



Check out the Parkinson's UK Twitter feed to keep up to date with more action from the WPC.

World Parkinson Congress: Genetics and Parkinson's

It was a packed schedule at the WPC yesterday.

Claire Bale from our Research team was in attendance at the fascinating Genetics: Inheritance, Risk Public Policy plenary session yesterday morning. Dr Gasser said that studying the genes we’ve found so far is revealing vital insights into what goes wrong with Parkinson’s – and can offer new clues for developing treatments.

Dr Christine Klein also discussed how understanding the part that our genes play in Parkinson’s has led to interesting possibilities for genetic testing.

Perhaps the most moving presentation came from David Iverson, a US broadcaster and journalist who discussed his family’s journey with Parkinson’s. His father had Parkinson’s - but now both he and his brother have also been diagnosed with the condition. David and his brother have children, so they discussed the idea of genetic testing together – but ultimately, chose not to have the tests.

Matt Farrer, a Canadian genetics expert said: “Genetics for Parkinson’s is moving forward at an incredible pace.”

Katherine Crawford, our Scotland Manager, was at the genetics session. She said: “It was really thought-provoking morning. The thing that really came across from John Iverson’s presentation was: Parkinson’s is progressive. But so is science.”

Jean and Mel Ballantyne, from the Parkinson’s UK Fife Branch, enjoyed having the chance to meet researchers face to face. Mel said: “The future looks exciting and you can definitely feel that enthusiasm amongst people here."

WPC Day 1: The road must start here


Last night, the World Parkinson Congress 2010 officially opened in impressive fashion.

Ex-Scotland Rugby captain Gavin Hastings spoke movingly to delegates about his wife's Parkinson's and his commitment to supporting the global Parkinson's community. His story was also in the news this morning, including in the Scottish Sun and the Daily Express

Bryn Williams, a local person who has Parkinson's, was greeted with a heartfelt standing ovation in response to a truly inspiring speech

Right: Gavin Hastings signs the Parkinson's pledge. Left to right are: Diane Hastings, Steve Ford and Bryn Williams.

Among today's highlights, our Chief Executive Steve Ford chaired a workshop on approaches for getting government research funding. And our Director of Research and Development, Kieran Breen, spoke to delegates about our Parkinson's Brain Bank and successful Brain Donor Appeal.

For delegates in need of light relief, one of our members, Bob Taylor, ran an innovative laughter workshop for people with Parkinson's and our Nintendo Wii bowling competition really got into full swing.

Check out our pictures from what’s been a busy first day at the congress, including Gavin Hastings signing the global Parkinson's pledge.

So there's been a real sense of hope, aspiration and positivity running through the congress during Day 1. It's already shaping up to be quite a memorable week. The words of Bryn Williams perhaps best sum up the mood here in Glasgow. Long may it continue.

"If the delegates whose life's work is Parkinson's, collaborate with those who live with Parkinson's, together we can deliver a future without Parkinson's.

"But the road must start here. The opportunity exists this week. In this city. At this congress…

"Welcome to Scotland. Welcome to Glasgow. Welcome to the World Parkinson Congress."

World Parkinson Congress - gearing up for opening ceremony

It's been a day of excitement and anticipation in Glasgow today! Delegates and organisations from across the world have arrived in their masses ahead of the opening ceremony of the 2nd World Parkinson Congress (WPC) this evening.

Ahead of the 'official' Day 1 of the congress tomorrow, we've been busy meeting other delegates and taking in some of the interesting pre-congress courses going on throughout the day.

Our chief executive Steve Ford attended the 'Fundamentals of PD' course earlier today. Steve said: "I saw some really amazing presentations today. The difference that having access to a team of specialist therapists makes for people with Parkinson's really came across and made a big impact."

One of our members, Richard Tyner, also went to the session. He said "I was fascinated to learn that by the time people are diagnosed with Parkinson's they may already be coping with up to 10 different non-motor symptoms associated with the condition."

During the opening ceremony, which starts at 6.30pm tonight, BBC newsreader Jane Hill will announce the winners of the WPC 2010 video competition. Scotland Rugby Union legend Gavin Hastings will also be talking to delegates. It's geared up to be a really special evening and a perfect start to the congress.

If you live in the local area, watch out for Colleen Henderson-Heywood, who has Parkinson's, appearing on ITV Tyne Tees tonight (6pm) talking about the congress. Colleen and our chief executive Steve Ford will also both be on ITV Borders 6pm news tonight too.

Follow us here and on Twitter tomorrow for the latest news and views from Glasgow.

World Parkinson Congress starts today!

This week, for the first time ever, the UK will play host to the 2nd World Parkinson Congress (WPC) in Glasgow. The WPC is an international forum for anybody around the world affected by Parkinson's. The event will showcase the latest developments in Parkinson's research to find better treatments and ultimately, find a cure for Parkinson's.

We'll be in Glasgow throughout the week blogging on the WPC - keeping you up to date with daily highlights and news and views from delegates, including our own Parkinson's UK staff, members and supporters.

You may have also noticed our WPC Twitter widget on this page? So as well as this blog, readers will be able to keep stay on track with up to the minute developments in all things WPC from people attending the event from across the globe.

If you use Twitter be sure to use the hashtag #2010wpc in your tweets. You can also have your say by adding your comments below.

If you're attending, expect a packed programme of workshops and activities to get involved in, from discussions on the latest innovations in Parkinson's research, to laughter therapy and dance sessions for people with Parkinson's. There's even a Nintendo Wii bowling competition open to all delegates!

We hope that everyone involved in the World Parkinson Congress finds this week enjoyable and enlightening; whether you're in Glasgow, or keeping up to speed via this blog and Twitter.

We hope that this week will help unite the international Parkinson's community and help create a worldwide dialogue about the condition. It's an exciting step toward making Parkinson’s a health, social and economic priority around the world and working together to find a cure for Parkinson's. Join us!

Parkinson's UK going global

Next week, for the first time ever, the 2nd World Parkinson Congress (WPC) comes to the UK. Hosted in Glasgow, the WPC provides an international forum for the latest scientific discoveries and medical practices for people affected by Parkinson's.

One of the main aims of the congress is to create a global movement to help make Parkinson's a health, social and economic priority around the world.

We're always really keen to raise awareness of Parkinson's across the world and join with others to help us find a cure and improve life for everyone affected by the condition.

If you're not able to come to the congress, we'll be keeping you up to date through this blog, our website and on our Twitter and Facebook pages.

Also on a global theme, our passionate fundraisers continue to show their support by taking part in overseas challenges throughout the year. As this blog is being written, we have a group of 20 dedicated supporters on our Trek China, walking along the country's spectacular Great Wall to raise vital funds for Parkinson's UK.

And we have an exciting new line up of challenges for 2011, including Trek Kilimanjaro and Cycle Cuba.

If you've recently taken part in one of our overseas challenges, please share your experiences with us.

And if you'd like more information on taking part in one of our 2011 challenges, or you'd like to support us in other ways, get in touch with our Events team at events@parkinsons.org.uk

Parkinson's UK gets political: Invest to save

Over the next 3 weeks Parkinson's UK will be attending the Liberal Democrat, Labour and Conservative party conferences. The party conferences are where we can take part in policy debates at the highest level. We'll be telling MPs and decision-makers about the challenges faced by people with Parkinson's and how the Government can help deliver the care and support they need (PDF file).

At each of the conferences people with Parkinson's will be arguing that good quality care is also cost-effective. So with cuts looming, it makes sense to invest in the right services.

For example, a Parkinson's nurse in Northern Devon helped reduce hospital admissions by 66%. Replicated across England, this reduction could save the NHS £7.5m every year.

We will talk to politicians about how proposed changes to the NHS, social care, the welfare system and research funding affect people with Parkinson's. We will be campaigning for fair care, access to the right benefits and support for vital research.

One of the highlights of the party conference season will be next Tuesday 21 September. Care Services Minister Paul Burstow MP will address our event Smarter Spending for Better Care at the Liberal Democrat conference in Liverpool.

If you're going to any of the party conferences, you're welcome to join us at one of our events. Call our Campaigns team on 020 7963 9349 or email campaigns@parkinsons.org.uk.

Find out about all our party conference activities and take a look at our new publication Invest to Save (PDF file).

Government cuts could devastate UK research

Vince Cable has announced cuts to public spending for UK research, saying that "there is no justification for taxpayers' money being used to support research which is neither commercially useful nor theoretically outstanding".

We don't agree.

The 2008-2011 science budget (link to PDF) promised over £11billion for science, including £485million ring-fenced for vital ageing research. But with major cuts predicted, science funding could fall by up to £1billion. Vince Cable's claim that research is not of an excellent standard gives a false impression.

No one can predict where research will lead - but you can't cut corners. To make the breakthroughs, you have to allow scientists to widely explore their ideas with freedom and imagination.

Fierce funding competition means British science currently punches above its weight internationally. Pioneering UK research has already led to better treatments, improved care and hopes for a Parkinson's cure. All of these achievements were built on the solid foundations of strong public research funding.

And there is still much more work to do. Restricting research now will slow the momentum we've built over the last 40 years - seriously stifling the UK's reputation as a world leader of innovative research and forcing the best researchers abroad as a result.

We all have a vital role to play in supporting innovative research and encouraging a flourishing UK Parkinson's research community. We'll be talking to politicians about the big issues affecting people with Parkinson's at upcoming political party conferences.

Help us make an impact. If you're as passionate as we are about research funding or any other issues affecting people with Parkinson's, then ask your MP to meet us at the party conferences. Your voice can make a difference.

Petition for fair care - have you signed yet?

Over the last few weeks we’ve been calling for all people affected by Parkinson’s to sign our Fair Care for Parkinson’s petition

We’re using the petition to call on the Government and decision-makers to protect services and make sure people with Parkinson’s get quality care that meets national standards – wherever they live.

As part of our promotion of the petition, we’ve been sending out letters to the editors of newspapers across England asking their readers to support it. We’ve had a great response, with people getting in touch to ask for information and find out how to get involved.

It’s also been really interesting to hear about the different ways people have been campaigning on fair care issues in their local communities. Our letter in the Leicester Mercury this week expressed our disappointment at the decision by local health authorities to cut funding of a community neurology team.

Similarly, in other areas across England, people’s responses have been really encouraging. We’re really excited to see how it progresses between now and November, when we will present the petition to Government.

What are your experiences of local Parkinson’s services? Share your views here or email campaigns@parkinsons.org.uk

Have you signed our petition? It only takes a couple of minutes to add your name online - your voice can really make a difference.