• Parkinson’s disease
• survey
• stigma

Parkinson’s disease, Parkinson’s syndrome, parkinsonism or just Parkinson’s: how do you refer to idiopathic Parkinson’s disease? Do you use different terms when speaking to doctors, nurses, patients or when writing a paper? And why does it matter? There has been much debate as to whether the term Parkinson’s disease is sufficiently inclusive to incorporate the diverse clinical presentations of individual patients, and whether the term Parkinson’s ‘syndrome’ or ‘complex’ better encompasses and expresses this diversity. Moreover, some have argued that the term ‘disease’ is potentially stigmatising, and that we should refer to the condition as Parkinson’s, especially when speaking to patients. In this editorial, I discuss these issues, and present the results of an informal survey of Parkinson’s specialists.

Last year was the 200th anniversary of the publication of James Parkinson’s original treatise on the condition that was later named after him. His ‘Essay on the Shaking Palsy’ showed extraordinary observational and descriptive skills, but did not fully encapsulate the complexity and variability of symptoms, both motor and non-motor, and the variable prognosis, perhaps understandably, since his descriptions were based on only six subjects. Later, Charcot recognised that the condition is clinically heterogeneous, and first used the term ‘Parkinson’s disease’, rejecting the terms ‘paralysis agitans’ or ‘shaking palsy’ used by Parkinson, not least because he recognised that a substantial minority of patients (around a third) with Parkinson’s have no tremor.1

Indeed, no two patients with idiopathic Parkinson’s disease are the same. We cannot be 100% sure of the diagnosis in life. Sporadic, that is, non-genetic idiopathic Parkinson’s disease is defined by pathology, that of Lewy bodies containing alpha-synuclein in neurones, which currently cannot be determined until after death. To date there are no reliable biomarkers, and the UK Parkinson’s Disease Society Brain Bank …