Parkinson’s Inside Out

Much of our current understanding of Parkinson’s disease (PD) is based on largely objective criteria and concentrates on the more overtly visual, and thus quantifiable, aspects of the condition. In contrast, the patient experience of PD is inherently subjective and, in many respects, is poorly reflected in the criteria used to diagnose and to treat the condition. Recent reflections on Parkinson’s disease (PD) have led to the conclusion that it is a highly complex disease when considering not only the motor, but also the accompanying or even preceding non-motor symptoms. It has been suggested that the currently defined symptomatology might reflect many different underlying patterns of pathology in brain that were previously unrecognised. Although the current medical diagnosis remains based primarily on motor symptoms, non-motor symptoms are increasingly being considered as key components of the illness. In future, this new perspective based on both motor and non-motor components of PD will lead to a revision of diagnostic criteria and therapeutic approaches. Based on the personal experience and testimonies of people with Parkinson’s, it is increasingly apparent that the diagnosis and treatment of the disease has a more profound effect on an individual patient and their personality in later life than had been previously realised – a phenomenon which has been largely ignored but which causes pronounced influences on their social environment and even the relationship with the care-giving professionals. It seems obvious that a conceptual difference in their perception of PD exists between patients and their treating physicians and healthcare team. Patients perceive the disease from a personal and introspective viewpoint that many outside struggled to comprehend. The physician’s perspective, by comparison, is detached and to a certain degree impersonal which may be necessary to enable a diagnosis, to initiate treatment and to deal with the inevitable decline in function with time. Although the physician’s perspective inevitably predominates, these two views of PD are, in essence, opposite sides of the same coin: the physician knows what the disease looks like while the patient knows what it feels like. Each perspective on its own provides a partial picture of PD. Supposedly, the two concepts do not exist independently and in fact, may amplify one another. To truly understand what having PD means requires reflection from both directions and in order to generate a full or at least a more comprehensive picture of the disease both viewpoints need to be integrated. A unique approach to achieving a truer, more complete, picture of what it means to have PD, might be obtained from the experiences of healthcare professionals and neuroscientists who, in addition to their professional expertise, also have PD. Accordingly, a small group of people was brought together who have PD and have thus experienced how it feels from the inside to receive a diagnosis of PD and then to pass through the health care system. The group