Parkinson's disease is now the fastest-growing neurological disease in the world. The idea that it is primarily a disease of old, frail people is still widespread. Current data show that stigma and false perceptions play a significant role in the patients' quality of life, coping with the disease, and even its development.
The World Federation of Neurology (WFN) marks the “World Brain Day” every 22 July, with a different theme each year. This year's motto was: "Move Together to End Parkinson's Disease."1 The WFN works with the International Parkinson and Movement Disorders Society and other stakeholders around the world.
Neurological diseases are now the leading cause of disability worldwide and demographic trends are leading to an increase in neurodegenerative diseases. One finding of the Global Burden of Disease Study 2016 was that the burden of disease caused by Parkinson's disease (PD) more than doubled between 1996 and 2016, from 2.5 million to 6.1 million. However, this increase is not exclusively due to rising numbers of older people, as the age-standardized prevalence has also increased by 21.7%. In addition to the longer duration of illness, environmental risk factors are also likely to play a significant role.2,3 Demographic and other potential factors suggest that this increase will continue, with an estimated 12 million people expected to be affected in the next decade.
Although PD is not considered a risk factor for COVID-19, many patients are affected by the effects of the crisis, whether through restrictions on outpatient services, problems in the supply of medication, or social distancing.1,4
It is time that our medical awareness reflects today's Parkinson's patients - young and old, male and female, active and weakened, working, retired or disabled, and with a wide variety of disease experiences
The most common representations of PD are based on a sketch by the physician Sir William Richard Gowers from his book “A Manual of Diseases of the Nervous System'' of 1886: old, white men who are frail, bent and shaky.
Two neurologists, in a recent article in JAMA Neurology, wish that this picture could be cleared up.5 They explain why Gowers’ drawing of 130 years ago is no longer a representative or contemporary view of how different today's patients experience the disease and how great the heterogeneity in terms of clinical manifestations can be.
In reality, only a proportion of patients are of old age. In a large study, only 39% of patients were in the late-onset category (over 70 years of age). In half (51%) of the cases, the disease started between the ages of 50 and 69 (middle-onset) and in 10% of the cases the disease started at under 50 (young-onset).6
More recent studies on subtypes also revealed that only 16% are affected by the disabling, diffusely malignant form.7 The other two categories used by the authors are much more common: the mild and motor-predominant form (49%) followed by the intermediate form (35%).
The time from the initial diagnosis to the first milestone (frequent falls, wheelchair-bound, dementia, or need for care) was 14.3 years for the most frequent subtype, 8.2 years for the intermediate type and 3.5 years for the diffusely malignant type. The mean survival time after diagnosis was 20.2, 13.2, and 8.1 years, respectively.
Although these figures may understandably also trigger anxiety in those affected, they at least indicate that a relevant proportion of patients live for many years without the severe disability portrayed in drawings such as those by Gowers.
A neurologist who himself suffers from PD, Prof. David Blacker, is the Medical Director of the Perron Institute for Neurological and Translational Science, Australia. He wrote in a commentary on an article by his colleagues: "What we as physicians say to our patients carries great weight; words must be chosen with care and perceptions of disease must count. I suspect that the mental image of PD may even influence disease progression; if a negative, nihilistic image is built up around the time of diagnosis, the concept of self-fulfilling prophecy, combined with apathy, may contribute to a lack of participation in physiotherapy and exercise, which I believe accelerates progress".5
The paper authors in JAMA Neurology also draw attention to the fact that images such as that of Gowers contribute to public prejudice, which many patients complain about. Stigma is a relevant determinant of quality of life.8 Research outside PD also suggests that expectations can be self-fulfilling: negative perceptions of aging at baseline were associated with poorer walking speed, loss of language skills and reduced self-assessed memory after two years of follow-up.5
Prof. Blacker was also grateful: "I recently published my experiences as a neurologist living and working with PD9 and I was immediately able to establish a link to the image of the runner with the dystrophic foot; I thank the authors for giving me a more positive picture than the 1886 version of Parkinson's did".
People with PD can help to improve the perception of the disease and also to show other people affected that PD is not a uniform disease and that people with PD can lead a meaningful life that is not generally limited by disability.
References:
1. Wijeratne, T., Grisold, W., Trenkwalder, C. & Carroll, W. World Brain Day 2020: move together to end Parkinson’s disease. The Lancet Neurology 19, 643 (2020).
2. Rocca, W. A. The burden of Parkinson’s disease: a worldwide perspective. The Lancet Neurology 17, 928–929 (2018).
3. GBD 2016 Parkinson’s Disease Collaborators. Global, regional, and national burden of Parkinson’s disease, 1990-2016: a systematic analysis for the Global Burden of Disease Study 2016. Lancet Neurol 17, 939–953 (2018).
4. Papa, S. M. et al. Impact of the COVID-19 Pandemic on Parkinson’s Disease and Movement Disorders. Mov. Disord. 35, 711–715 (2020).
5. Armstrong, M. J. & Okun, M. S. Time for a New Image of Parkinson's Disease. JAMA Neurol (2020) DOI:10.1001/jamaneurol.2020.2412.
6. Mehanna, R., Moore, S., Hou, J. G., Sarwar, A. I. & Lai, E. C. Comparing clinical features of young-onset, middle onset, and late-onset Parkinson’s disease. Parkinsonism & Related Disorders 20, 530–534 (2014).
7. Pablo-Fernández, E. D., Lees, A. J., Holton, J. L. & Warner, T. T. Prognosis and Neuropathologic Correlation of Clinical Subtypes of Parkinson Disease. JAMA Neurol 76, 470–479 (2019).
8. Maffoni, M., Giardini, A., Pierobon, A., Ferrazzoli, D. & Frazzitta, G. Stigma Experienced by Parkinson’s Disease Patients: A Descriptive Review of Qualitative Studies. Parkinson’s Disease vol. 2017 e7203259 https://www.hindawi.com/journals/pd/2017/7203259/ (2017).
9. Blacker, D. A neurologist with Parkinson’s disease. Practical Neurology (2020) DOI:10.1136/practneurol-2020-002623.