The journey: Parkinson's disease

Introduction

To receive a diagnosis of a chronic neurological illness is the beginning of a long journey into the unknown—a journey that may begin in hope, pass through periods of elation and frustration, and finally end in acceptance and resignation. We would like you to come with us part of the way along the journey of Parkinson's disease, seen from the point of view of those who are compelled to make it—the patients and their carers.

The map

When we begin any journey, we need a map. We need to pack and prepare for the journey. We need to know what to expect along the way. The telling of the diagnosis and the explanation of the disease and its treatment form just such a map. And, like the maps of the medieval world, the map of Parkinson's disease is full of unknown territories and nameless threats. Small wonder that the telling of the diagnosis is so difficult. But it is so important and is one of the things that patients repeatedly say could be done better.

Patients tell us that the diagnosis is not always given in such a way that they can take it in, adjust to it, and decipher what it really means. The telling of the diagnosis often has to be repeated—most people are so shocked and confused by what they hear that they may be struggling to make sense of it and too stunned to ask the right questions. In the extremes of distress, people may hear what they want to hear or get the wrong message altogether. In trying to allay patient's fears, professionals may be guilty of misinformation.