New Awareness Campaign throughout Europe for those living with Parkinson's, supported by PAI

international | health / disability issues | press release Monday August 25, 2008 02:01 by Ann Keilthy - Parkinson's Association of Ireland youngparkinsons at eircom dot net

Living with PD often leads to a poor quality of life

The EPDA - European Parkinson's Disease Association - has initiated a campaign to "Make Parkinson's Livable" and increase awareness of this often distressing condition.

NEWS RELEASE
EMBARGOED: 00.01 25.08.08

A moving new Parkinson’s disease campaign aims to stamp out inequalities in treatment and care across Europe
The "Awareness campaign" visualises daily challenges faced by people
with Parkinson’s as revealed by new European research

August 25, 2008, Madrid. The European Parkinson’s Disease Association (EPDA) today urged European decision makers and politicians to end inequalities in care and treatment access for people with Parkinson’s disease.

The plea was made during the launch of EPDA’s latest campaign, ‘Parkinson’s is visible, make it livable’, intended to visualise the daily challenges faced by those with Parkinson’s, increase people’s knowledge and understanding of the disease and influence decision makers.

EPDA’s campaign follows new research* highlighting the extent to which everyday activities are negatively impacted by Parkinson’s. The research, Real Life, Real PD, conducted by EPDA among 3,000 people living with the disease, showed that eating, dressing, washing and speaking are some of the daily tasks significantly affected and that the majority of people do not feel in control of their symptoms. Almost half of all respondents described how their depression and mood swings placed an added strain on relationships with partners and families.

Speaking at the event, EPDA president Stephen Pickard commented, “Parkinson’s is a costly disease and places a huge burden on carers and society as a whole. We need governments to realise that taking action to reduce this burden by ensuring people receive the best care and treatment available makes the most economic and social sense.”

He continued, “There are nearly 1.2 million people living with Parkinson’s in Europe, and with an ageing population this figure is set to rise. It’s time to address inequalities in care and treatment of the disease and improve the lives of those affected by Parkinson’s now and in the future.”

The campaign was launched at the 12th Congress of the European Federation of Neurological Societies (EFNS) in Madrid where delegates heard from EPDA representatives and watched a series of emotive short films featuring people with Parkinson’s battling with everyday tasks such as shopping and crossing the road.
The campaign, ‘Parkinson’s is visible, make it livable’, is the first step towards eradicating inequalities in care and treatment access across Europe and a summit meeting is scheduled to take place in Brussels next year where MEPs will discuss the practical steps required to improve management of the disease.

Ann Keilthy, from Dublin, who lives with Parkinson’s disease, commented on the awareness campaign, “EPDA’s campaign is a vital step in offering hope to the millions of people with Parkinson’s by increasing the visibility of the condition and inspiring action. This is a terrible condition and we must heighten the public’s awareness of it to ensure the fight for improved care and treatment continues throughout Europe.” Una Anderson Ryan, the National Chairperson of the Irish Association said that” the reality of life for someone with Parkinson’s in Ireland is that services and other assistance are not adequate to cope with the needs. Some parts of the country have better services than others, but the difficulties facing those with Parkinson’s on a daily basis suggests that more and better services and greater access to those services is needed, along with a greater public awareness of what Parkinson’s is. We applaud the EPDA for taking this initialive and wish them every success in drawing to the attention of the media and the public throughout Europe the deficits in services and the reality for most of those living with what is a progressive neurological disorder, which currently has no cure.”

To watch EPDA’s short films and find out more about the campaign, please follow this link:

www.parkinsonsdecisionaid.eu.com/awarenessCampaign/2008/video.asp

*The full research report has been submitted for publication to the International Journal of Clinical Practice and is currently under review
-ends-

For further information please contact:

Parkinson’s Association of Ireland

1. Ann Keilthy, person with Parkinson’s, and PRO of the Parkinson’s Association of Ireland. Mob 087 2853117
E: [email protected]
2. Pauline Mahady, Office administrator and Helpline Operator 1 800 359 359]
E: [email protected]
3. Michael Long, Vice Chairperson of the National Executive of the PAI. 01-2941264

Or Tonic Life Communications:

Katie Fyfe : T: +44 (0) 207 798 9920 E: [email protected]
Chris Caudle : T : +44 (0) 207 798 9999 E : [email protected]

Notes to editors

Real Life Real PD Survey
The Real Life, Real PD Survey, a joint project between EPDA and GlaxoSmithKline, was conducted in the following European countries: Andorra, Armenia, Austria, Azerbaijan, Belgium, Bosnia, Bulgaria, Czech Republic, Denmark, Estonia, Faeroe Islands, Finland, France, Georgia, Germany, Ireland, Italy, Lithuania, Luxembourg, Netherlands, Norway, Portugal, Slovakia, Slovenia, Spain, Sweden, Switzerland, Turkey, Ukraine and the UK

Close to 3,000 people across Europe participated in the survey, to assess the real-life everyday concerns of people living with PD. Of these 55 percent were male; 45 percent were female, and the average age was 63 years. Over half of respondents had lived with PD for over 6 years. Respondents were recruited via local (EPDA) member organisations in each country. Own-language questionnaires were available to complete and submit online via the EPDA website.

About EPDA
The European Parkinson's Disease Association (EPDA) is a non-religious, non-political and non-profit making organisation concerned with the health and welfare of people living with Parkinson's disease and their families and carers.
Founded in June 1992 in Munich, with a membership of nine European Parkinson's patient organisations, the EPDA currently has a membership of 40 organisations across Europe (active members able to vote at the annual General Assembly), .
EPDA aims to ease the lives of people with Parkinson's and their families and carers by promoting a constructive dialogue between science and society, and by encouraging and supporting the development of national PD organisations.

Worthy of our support I thik, and we hope the campaign is a resounding success!

Ann Keilthy
PRO
Parkinson's Association of Ireland

Mob 087 2853117
or contact Pauline at the National Office on 1800 359 359.