FOREWORD
In 2008, the EPDA (European Parkinson’s Disease Association) launched its awareness campaign Life with Parkinson’s. The aim was to highlight what it is like to live with Parkinson’s disease and the impact that it has on daily life, not only for the person with the condition, but also for the whole family, health providers and governments.
Parkinson’s disease is the second most common progressive neurodegenerative condition which affects people from all cultures and races around the world. There is currently no cure and it impacts old and young, men and women.
Parkinson’s affects every aspect of daily living. It is a complex disease and its effects range from the physical to the psychological, and its impact crosses nearly every cultural, social and economic boundary. The symptoms are different for each person and they can vary from day-to-day, hour-to-hour, even minute-to-minute. Whilst treatment is constantly improving, researchers have not yet been able to find a way to prevent or cure the disease.
It is vital that awareness is raised about how Parkinson’s progresses, what it is really like to live with a chronic neurological condition, the treatments that are available and the side effects caused by medication and the increasingly damaging social and economic impact of Parkinson’s on society.
The campaign literature is in two sections: Life with Parkinson’s (part one) highlights the importance of early diagnosis as well as treatment to delay progression. It also illustrates the economic and social burden in the late stages of the disease where the impact is at its greatest on the people with Parkinson’s, their families, carers and society as a whole.
Life with Parkinson’s (part two) focuses on the disease’s non-motor symptoms and demonstrates the complexity of Parkinson’s, while at the same time reiterating the importance of early diagnosis and effective treatment. There are many non-motor symptoms that need to be managed including pain, incontinence, constipation, sleep disturbances, fatigue, anxiety and depression. These are just a few of the symptoms that people with Parkinson’s have to live with on a daily basis.
We would not have been able to describe Parkinson’s adequately without the support of many people around Europe who have kindly agreed for their personal stories and case histories to be used.
We hope that by sharing their experiences, as well as accurate facts, that the interest of decision makers and the general public will be harnessed to understand that Parkinson’s goes beyond tremor; it is not just older people who are affected and that people have the right to receive the best care and treatment available.
With your help, the EPDA can raise awareness of the social and economic impact of Parkinson’s and its consequences to society.
Knut-Johan OnarheimEPDA President [2009 - ]
