Parkinson’s and Palliative Care: personal and research reflections
Lab of Medical Physics
School of Medicine
Aristotle University of Thessaloniki
11th April – The World Parkinson’s Day and the birthday of Dr James Parkinson, the man who first systematically described the disease that would later bear his name, in his work entitled “An Essay on the Shaking Palsy” in 1817 .
Tremor was the first thought coming to mind when considering people living with Parkinson’s Disease. This belief was also true for most people in my network and, as it turns out, “Parkinson’s is only a movement-related condition” and “Parkinson’s always causes a tremor” are very common misconceptions among the general public . It was not until I started working and interacting with patients that I realized that Parkinson’s is a more complex condition.
Although Parkinson’s is traditionally viewed as a movement disorder, its features encompass not only the typical parkinsonian triad (i.e., tremor, bradykinesia, and rigidity), but also other motor (gait, speech, and posture impairment) and non-motor symptoms, including cognitive dysfunction, mood and sleep disorders, behavior and other psychiatric issues, autonomic dysfunction (e.g., urinary and bowel problems), and pain . Non-motor manifestations may occur at any stage of the Parkinson’s and they have a greater impact on health-related quality of life than motor symptoms .
In September 2019, I worked as a facilitator of the intervention process in the context of the i-Prognosis H2020 project, in which the Lab of Medical Physics, of Aristotle University of Thessaloniki, participates as a partner. The i-Prognosis project aims to develop Parkinson’s early detection tests based on users’ interaction with everyday technology (e.g., smartphones) and to design technology-based interventions for supporting Parkinson’s patients over the course of the disease .
During the four months of the intervention study, I met Parkinson’s patients that avoided going out in the first years of the disease, in fear of what other people would say about their shaky hands; patients that, years after having been diagnosed, were still uncomfortable in social settings because of their dysphasia; patients that felt the need to apologize for the “stiff” look on their face, caused by their rigid face muscles; people that, although diagnosed, they had not fully accepted it; Parkinson’s patients mourning the death of their fellow Parkinson’s patients.
This personal experience of mine reinforced by research, identifies palliative care needs from the Parkinson’s diagnosis stage to end-stage disease. Studies show that Parkinson’s patients and family caregivers are confronted with the emotional impact of the diagnosis, the implications for the patient’s social life, the practical implications of the symptoms, the enduring financial hardship as well as the need for supportive care as Parkinson’s progresses, reflecting the similarity between people living with Parkinson’s and people living with typical palliative care diagnoses, such as cancer . Nevertheless, current medical systems fail to meet the palliative care needs of Parkinson’s patients and affected families, since specific palliative care is not commonly considered for this population .
In contrast to earlier suggestions that introduced a Parkinson’s “palliative phase” at the end-stage of the disease, associated with a decreased response to therapy and advanced co-morbidity [8,9], studies have shifted to a new paradigm that gradually incorporates palliative care throughout the course of the Parkinson’s Disease, providing guidelines for clinical practice on how to help patients and families maintain autonomy and make a successful transition through the different phases of the Parkinson’s [10,11].
In the basis of these reflections, it could be concluded that misunderstanding is a key barrier hindering the integration of palliative care in Parkinson’s Disease. This misunderstanding is reflected in both what needs palliative care addresses and what Parkinson’s Disease is. Palliative care is not only for patients approaching the end of their lives. It is about supporting any patient with a serious disease to live well and maintain quality of life over the whole course of their disease. Parkinson’s patients are affected not only physically but also intellectually, emotionally, and socially. Understanding and raising awareness over the disease and the importance of early palliative care for Parkinson’s patients, should be included in our actions for Parkinson’s Disease.
1. Parkinson, J. (2002). An essay on the shaking palsy. The Journal of neuropsychiatry and clinical neurosciences, 14(2), 223-236.
2. Downward, E. (2017). Myths and Misconceptions About Parkinson’s. Retrieved from: https://parkinsonsdisease.net/basics/myths-misconceptions-facts/
3. Fasano, A., Daniele, A., & Albanese, A. (2012). Treatment of motor and non-motor features of Parkinson’s disease with deep brain stimulation. The Lancet Neurology, 11(5), 429–442. doi:10.1016/s1474-4422(12)70049-2
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11. Richfield, E. W., Jones, E. J., &Alty, J. E. (2013). Palliative care for Parkinson’s disease: a summary of the evidence and future directions. Palliative Medicine, 27(9), 805-810.