EPDA Launches Third and Final Life with Parkinson’s Booklet to Help Improve the Everyday Lives of People with Parkinson’s Disease
Launch helps mark the voluntary organisation’s 20th anniversary celebrations in Amsterdam
AMSTERDAM, the Netherlands, Monday 8th October 2012, PRNewswire/- The European Parkinson’s Disease Association (EPDA) has launched the third and final booklet in its Life with Parkinson’s series. This latest edition concludes a four-year awareness campaign, which aims to highlight the lack of understanding and knowledge concerning Parkinson’s that exists throughout Europe today. The booklet’s launch, in Amsterdam, the Netherlands, was one of the many activities in a weekend dedicated to celebrating the organisation’s 20th anniversary year and its commitment to improving the lives of people with Parkinson’s (PwPs).
The Life with Parkinson’s awareness campaign began in 2008 and the accompanying booklet series has since achieved Europe-wide acclaim from the Parkinson’s community, with people living with the disease and healthcare professionals praising the EPDA for its work. “We say that our condition and feelings are impossible to communicate, but this booklet persuaded me that there is a way to share our situation with others,” said Bohumila Šindelárová, a PwP from the Czech Republic. “I have to praise all the booklets,” added Olga Bandelj, a PwP from Slovenia. “They are very useful. I use them every day.”
The first part of the campaign focused on the importance of early diagnosis and advanced Parkinson’s management while the second part focused on the disease’s non-motor symptoms and demonstrated the complexities associated with the condition.
The third and final part of the Life with Parkinson’s campaign addresses the necessity of an accurate diagnosis and demonstrates the importance of the right treatment for the right person at the right time. The guide, written by Parkinson’s disease experts, provides practical advice for addressing the full range of challenges PwPs, their carers and healthcare professionals face. The booklet includes advice to assist early detection of Parkinson’s symptoms, as well as coping strategies for PwPs and their families. In addition, specific solutions are suggested for common problems; for example, a ‘symptoms diary’ completed by PwPs may help healthcare professionals identify the early signs of ‘wearing off’, a major problem in Parkinson’s.
“This booklet is an invaluable tool, filled with practical information for people with Parkinson’s, their families and all healthcare professionals involved in their care and management,” said EPDA vice-president Susanna Lindvall. “The EPDA is very proud of the Life with Parkinson’s awareness campaign. We urge healthcare professionals and patient organisations to use and share this booklet as widely as possible as it offers several solutions to the many challenges that face people living with the disease.”
The Amsterdam 20th anniversary weekend – “the ultimate EPDA occasion”, according to Lindvall – kicked off on Friday 28 September with the first ever European Unity Walk, which saw over 1,000 EPDA supporters and friends, including hundreds of PwPs and their family supporters, taking part in an awareness-raising walk through the city. The following day the EPDA held its anniversary conference, which brought together PwPs and their family supporters, European Parkinson’s organisations, patient groups, healthcare professionals and representatives from the treatment industry to share knowledge and expertise and discuss the latest Parkinson’s-related news and discoveries.
Life with Parkinson’s Part 3 was supported by an unrestricted educational grant and writing support provided by Teva Europe and H. Lundbeck A/S.
To download a copy of Life with Parkinson’s Part 3 and to learn more about the Life with Parkinson’s campaign, please visit www.epda.eu.com.
To find out more about the first ever European Unity Walk, please see its dedicated website: www.europeanunitywalk.com.
Notes to Editors
Parkinson’s is a progressive, chronic and complex neurodegenerative disease that has no cure. It affects all aspects of daily living and is the most common neurodegenerative disease after Alzheimer’s disease. The effects of Parkinson’s invariably involve the physical, cognitive and psychological domains, and impact across nearly every cultural, social and economic boundary.
Parkinson’s occurs as a result of the destruction of nerve cells in the brain that produce the neurotransmitter dopamine. Due to this lack of dopamine, messages in the brain fail to transmit smoothly to the muscles, resulting in difficulties controlling movement. A similar destruction occurs naturally with ageing, but in Parkinson’s the process is accelerated.
There are more than 1.2 million people living with Parkinson’s in Europe and this number is forecast to double by 2030 primarily as a result of the ageing population. The average age of onset is 60 years, although more than one in 10 people are diagnosed before the age of 50. Parkinson’s is more prevalent in men than women, and may affect people of all ethnicities. It is important to remember that Parkinson’s can affect anyone.
The EPDA is the only European Parkinson’s disease umbrella organisation. It represents 45 member organisations from 36 European countries and advocates for the rights and needs of more than 1.2 million people with Parkinson’s and their families.
By working with its 45 member associations the EPDA aims to:
- ensure equal and timely access to prompt diagnosis and good-quality Parkinson’s care across Europe by raising standards and reducing existing inequalities
- increase public awareness of Parkinson’s as a priority health challenge
- help reduce stigma and remove discrimination against people with Parkinson’s
- support the development of national Parkinson’s organisations throughout Europe.