EPDA steps up awareness campaign with launch of non-motor symptoms materials

4 October 2010

Press Release

The EPDA has launched the second part of its successful Life with Parkinson’s awareness campaign at the 2nd World Parkinson Congress (WPC) in Glasgow, Scotland.

The latest element of the campaign – a booklet and DVD entitled Life with Parkinson’s – nonmotor symptoms – puts the spotlight on the many non-motor symptoms that people with Parkinson’s (PWPs) have to cope with on a daily basis.

Motor symptoms have long been thought of as the predominant symptoms of Parkinson’s, but the non-motor symptoms are now increasingly recognised for their frequency and impact on quality of life. They are highly varied and occur throughout the course of Parkinson’s.

“Recent surveys have revealed that about 90% of PWP have at least one non-motor symptom, with about 10% experiencing up to five different symptoms,” said EPDA vice-president Susanna Lindvall. “They can occur at any stage of Parkinson’s and some – including olfactory dysfunction (loss of sense of smell), constipation and depression – can precede the motor symptoms by more than a decade.”

These symptoms are often poorly recognised, however, and the latest part of the EPDA’s campaign has been developed to help tackle this problem. “The Life with Parkinson’s booklet – a major part of the Life with Parkinson’s campaign – provides an overview of the different nonmotor symptoms PWPs experience, together with clinical case studies from specialist physicians and PWP testimonials, to provide insights into how treatment may have to be adapted to reduce these symptoms’ impact,” Lindvall explained.

“It is hoped that a better understanding of these disparate early signs might lead to earlier diagnosis and treatment in the future. Non-motor symptoms can impact the lives of PWPs to the same or greater extent as motor symptoms. They contribute significantly to disability and the associated costs of care, and have a severe impact on quality on life.”

Other non-motor symptoms, such as Parkinson’s dementia, occur later in the course of the condition and can come to dominate the more advanced stages of Parkinson’s. Through this second part of the Life with Parkinson’s campaign, therefore, the EPDA aims to raise awareness of non-motor symptoms among healthcare professionals, healthcare providers and those who influence how healthcare is delivered, as well as PWPs and their families and carers.

The EPDA’s Life with Parkinson’s awareness campaign began in August 2008 and intends to spread the message that by providing the right treatment at the right time, improved quality of life will be the result: PWPs will remain within the workplace for longer, which will enable their greater participation within society, while the indirect costs of their disease – from lost productivity, carer burden and institutional care – will be reduced.

The materials began two years ago in the form of the Life with Parkinson’s booklet and associated DVD, which illustrated the impact of Parkinson’s motor symptoms in the late stages of the disease, where the impact on society is at its greatest. By the end of 2010, this first booklet will be available in 16 languages.

Following the launch at September's WPC of the English language Life with Parkinson’s – non-motor symptoms booklet and DVD, it will be subsequently translated into multiple languages too.

The campaign is kindly supported by unrestricted educational grants from many of the treatment companies. For more information about this campaign please go to www.parkinsonsawareness.eu.com.

Notes to Editors

About the EPDA

• The EPDA has 44 member organisations and is the advocate for the rights and needs of 1.2 million people with Parkinson’s and their families in Europe
• Its aim is to raise awareness to ensure that all people with Parkinson’s and their families have access to the right management and the right treatment at the right time
• It is a non-political, non-religious and non-profit making umbrella organisation for European Parkinson’s patient organisations
• The EPDA's vision is to enable a full life for people with Parkinson’s while supporting the search for a cure.