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EPDA Plus Issue 16
Summer 2011 | English
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ISSUE 16 CONTENTS
- EPDA ‘Unity Walk’ possibility?
The EPDA is considering using the highly successful annual US Unity Walk as a model on which to base a similar awareness event in Europe.
- Move for Change online survey live once again
The second phase of the EPDA’s online Move for Change campaign went live on 11 April. The three-year, pan-European campaign – that began 12 months ago – questions whether the rights of people with Parkinson’s (PWPs) have improved since the creation of the Charter for PWPs in 1997.
- Stars shine a light on Parkinson’s
A host of British celebrities have pledged their support to finding a cure for Parkinson’s by designing their own candle holders, which were auctioned off in support of the Cure Parkinson’s Trust ILLUMINATE campaign.
- Here’s a wheely good idea...
Riding a bicycle could be a cheaper and more accurate way of diagnosing certain forms of Parkinson’s than more traditional tests, according to a recent report in The Lancet.
- ‘Wii-hab’ evidence grows
The evidence that virtual video games can have a positive effect on the symptoms of people with Parkinson’s (PWPs) is mounting at an impressive rate.
- Brothers row Atlantic in PD challenge
Two ex-Royal Marines have successfully rowed 3,100 miles across the Atlantic – one of the world’s toughest challenges – and have raised £30,000 for Parkinson’s research as a result of their efforts.
- Man refuses to ‘surrendah’
A man from the US who was diagnosed with Parkinson’s 17 years ago has refused to let his symptoms affect his quality of life and is urging other people living with the disease to follow his example.
- Nurse tunes in to his job
A nurse that specialises in helping people with neurological conditions is raising the profile of carers through writing songs and publishing a book.
- Sunshine blogger looks on the bright side of life for inspiration
An English woman with Parkinson’s has set up her own website in an attempt to boost awareness of the condition as well as raise funds for Parkinson’s UK.
- European politicians back calls to deal with health inequalities
MEPs have adopted a report that calls for EU-wide action to tackle health inequalities in Europe.
- Telemedicine iPhone boost
A team at UCLA (University of California, Los Angeles) has been researching using an iPhone and a customised application to display how the characteristic Parkinson’s tremor can be diagnosed remotely using the mobile device’s accelerometer.
- Latest PD genetic evidence is ‘strong’, say NEURON scientists
An EU-wide study has found five new genetic variants for Parkinson’s. The €2.7m research was funded in part by the NEURON (Network of European funding for neuroscience research) initiative, a co-ordinated action group that is, in turn, funded under the EU’s Sixth Framework Programme (FP6).
- On the hunt for biomarkers
A major study into the progression of Parkinson’s has been launched by the Michael J Fox Foundation.
- New neuro journal launched
A new bimonthly neurological journal has been launched that will address all the latest trends in the field – from research and development through to clinical application and management.
- Biomed Alliance born to keep European research competitive
A new European alliance of biomedical researchers has been launched to boost research funding and keep Europe competitive as China’s research investment soars.
- Ibuprofen possibilities
- Amphetimine PD risk?
- Vitamin D level debate
- Wait and see study
- Parkinson’s in your pocket...
Does the idea of receiving all the latest Parkinson’s and medication news, practical advice, useful links and much more via your mobile phone sound too good to be true? Well, it’s not, thanks to a joint venture between the EPDA and Swedish communications agency Animech AB. Dominic Graham reports.
- League of nations
EPDA Plus is embarking on a series of special features that focus on how different regions around the world are all, in their own unique ways, playing the same game: they are trying to manage Parkinson’s care and to raise awareness of the disease as best they can. To introduce the series, EPDA president Knut-Johan Onarheim explains how these countries’ selfless efforts – from the richest to the poorest – should be an inspiration to us all.
- Magic in Mumbai
The challenges facing the management of Parkinson’s in India’s largest city cannot be overestimated. Yet, thanks to the supportive care of the not-for-profit PDMDS organisation, the quality of life for hundreds of people are improving dramatically. Maria Barretto reports.
- Europe celebrates World PD Day in style
The Greek, Norwegian and Swedish national Parkinson’s associations honoured the 2011 World Parkinson’s Disease Day by launching specially translated materials of the EPDA’s Life with Parkinson’s awareness campaign in their respective countries.
- ‘When dreams become reality’
After years of negotiations – and thanks to the guidance and support of the EPDA – Parkinson Luxembourg (PL) is to finally open its own Parkinson’s centre next year, 20 years after the organisation was created.
- Statement of intent
The EPDA and a large number of Parkinson’s experts are developing for the first time a European consensus statement that will categorically define what the optimal management of Parkinsons should be. Dominic Graham explains how it is not only much needed but also long overdue.
- Dutch ‘Parkinson cafe’ scheme gaining ground
The success of two independent social meeting places for people with Parkinson’s has proved the inspiration for the Netherlands Parkinson’s association’s latest national initiative.
Lets make every moment count
Year after year, April remains a vital month in the Parkinson’s calendar. Throughout the globe, patient organisations and healthcare professionals work together to raise awareness about Parkinson’s, and by combining World Parkinson’s Disease Day (WPDD) and the European Parkinson’s Action Day (EPAD) on 11 April, the EPDA hopes to make decision makers at various levels, healthcare professionals, the media and the general public aware of the importance of providing the right medication and treatment at the right time.
- Talking heads
A man who has lived with Parkinson’s for more than five years is turning heads in the art world after allowing more than 100 photographers to take his portrait in an attempt to raise the disease’s profile and to come to terms with his own condition. Kirstie Brewer meets Tim Andrews and reveals how his sometimes shocking images speak a thousand words.
- Safe conduct
According to Dr Lars Wojtecki, deep brain stimulation fine-tunes parts of the brain and restores them to the right rhythm just like a conductor would bring an orchestra back in time. He explains how, thanks to the latest technological advances, there are stimulation devices currently available that provide clinicians with more tools to overcome challenging cases and help people with Parkinson’s optimise their own disease therapy
- Question time
A lively workshop that brought together people with Parkinson’s, caregivers and healthcare professionals considered the impact of non-motor symptoms on quality of life, and sparked debate and positive food for thought. Eimear O’Brien reports on behalf of UCB Pharma SA.
- The search for progress
Early detection of Parkinson’s may in the near future mean identifying people several years before key symptoms develop. Janis Smy talks to specialists about the potential benefits of pre-clinical diagnosis, and the current efforts being made to define and validate appropriate screening techniques.
- Switching on to wearing off
Nearly every person with Parkinson’s will at some point require levodopa treatment – yet this may mean they will experience the drug’s unpleasant ‘wearing off’ side effects too. Brian Magennis, an Irish Parkinson’s and movement disorders clinical nurse specialist, talks to EPDA Plus about the troublesome phenomenon and gives his advice on how best to manage it.
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From issue 13, EPDA Plus has been translated into French, German, Italian and Spanish. These multilingual versions are only available to download.