Parkinson disease is neither imminently fatal nor transient but is incurable, and as it affects individuals differently based on their unique identities, culture, access to health care, and social support, it is vital to empower patients.
THIS MONTH’S ISSUE OF NeurologyLive® focuses on Parkinson disease (PD). James Parkinson, who first described the essential clinical phenomenology of PD in his 1817 paper “An Essay on the Shaking Palsy” and for whom the condition was named, was born on April 11, 1755.1 Thus, April was chosen as Parkinson’s Awareness Month to remind us of the importance of supporting progress in treating and caring for individuals with this condition and working toward a cure.
After Alzheimer disease, PD is the most common neurodegenerative disease. It affects approximately 10 million individuals worldwide and is expected to affect 12 million to 17 million individuals by 2040, spurred by an increasingly aging population and risk factors associated with industrialization products such as pesticides and solvents.2
As with many other chronic diseases, PD is not imminently fatal nor transient but is incurable. The lifelong search for effective treatments and quality of life intersects with different phases of life as PD affects individuals young and old. It is a heterogeneous disorder with motor and significant nonmotor symptoms, and it affects individuals differently based on their unique identities, culture, access to health care, and social support.
In this issue, Indu Subramanian, MD, writes about her work unveiling the disparities in care for underrepresented populations with PD. Although nonmotor symptoms, particularly those affecting mental health, are a significant problem for individuals with PD, they are even more poorly addressed in vulnerable and underserved populations. Subramanian discusses the significant gaps in care facing women with PD.3 Although women are less likely to get PD, much of the common understanding of how individuals are affected is more specific to men and does not adequately address critical issues for women with PD. We need to increase our awareness of these differences to provide individualized care appropriately. Women and minorities are underrepresented in PD research, and our knowledge of treatment strategies and responses to therapies is also lacking in these populations.
The past few years and the enduring COVID-19 pandemic have highlighted how vulnerable individuals with PD can be as their lives intersect with acute care medical issues and hospitalization. As PD progresses, treatment regimens become more complex and there is diminishing flexibility to balance therapeutic efficacy while minimizing adverse effects. Both efficacy and complications of therapy are worsened by concomitant illness and infection. Unfortunately, studies show that as much as 89% of all admissions and 17.4% of all medication dispensing for hospitalized patients with PD are fraught with errors in dose, timing, or concomitant administration of contraindicated medications.4 These errors result in increases in complications, including falls, aspiration pneumonia, and psychosis or delirium, leading to increases in morbidity, mortality, increased length and cost of care, and negative patient experiences.5-7
It is critical to spotlight these issues so we can readily address them in the professional neurological community. The Parkinson’s Foundation has helped empower patients and families with their Aware-in-Care Kits for hospitalization. But more needs to be done proactively by the medical community so that the hard work to optimize patients’ treatment isn’t undone during hospitalization.
Much has been published on the unique vulnerabilities of individuals with neurological conditions, including PD, during the COVID-19 pandemic. In this edition, the works by Subramanian and Mustafa Saad Siddiqui, MD, highlight different aspects of this. Although individuals with PD are not more likely to get COVID-19, they are more likely to have complications from it. Strikingly, the excess mortality in patients with PD during this time has been significant.8 This highlights the likely intersecting vulnerability of having PD with social isolation and more significant difficulties in getting care during a pandemic. This is also likely further compounded in individuals with preexisting poor access to care.
As the weather warms and we progress through April, let us give thoughtful attention to the problem of PD. This diverse, multifaceted condition deserves multidisciplinary care and open discourse on reducing disparities and individualizing care. We need to continue fighting for research funding for better treatments and a cure. Let us be diligent but driven by hopeful optimism and inspire our patients to keep fighting.