News & Comment

In our efforts to create more public awareness about Parkinson’s disease, we often emphasize the tremendous impact of this common disease on an individual’s life. However, in public awareness campaigns, we largely avoid discussions on the survival of people with Parkinson’s disease (PwP). Many clinicians even state that the survival with Parkinson’s disease is close to normal. In this article, we contemplate on findings regarding the mortality of Parkinson’s disease in order to spark a discussion about what information we should provide to affected individuals and their near ones about the life expectancy of PwP. Our narrative review of the evidence indicates that although the survival of PwP has improved over time, PwP still live fewer years than their age- and sex-matched population comparators, albeit at older ages this difference can be small. We feel that it is important to emphasize this information towards PwP, the general public, policymakers and funding bodies. We hope that this will help to create a better understanding of the enormous impact that this disorder can have on affected individuals, even beyond the disability that is experienced during life.

We have greater knowledge about the genetic contributions to Parkinson’s disease (PD) with major gene discoveries occurring in the last few decades and the identification of risk alleles revealed by genome-wide association studies (GWAS). This has led to increased genetic testing fueled by both patient and consumer interest and emerging clinical trials targeting genetic forms of the disease. Attention has turned to prodromal forms of neurodegenerative diseases, including PD, resulting in assessments of individuals at risk, with genetic testing often included in the evaluation. These trends suggest that neurologists, clinical geneticists, genetic counselors, and other clinicians across primary care and various specialties should be prepared to answer questions about PD genetic risks and test results. The aim of this article is to provide genetic information for professionals to use in their communication to patients and families who have experienced PD. This includes up-to-date information on PD genes, variants, inheritance patterns, and chances of disease to be used for risk counseling, as well as insurance considerations and ethical issues.

The prevalence of smell loss in Parkinson’s Disease (PD) patients greatly exceeds that of the characteristic motor symptoms defining the disease by several years. One hypothesis of the cause of PD states that it is initiated in the olfactory bulb — the critical first central processing stage of the olfactory system — and that the olfactory nerve might serve as an entry point to the OB for pathogens or environmental components. But what if there was no OB to start with? Recent data demonstrate that cortical, but not peripheral, blindness acts as a protective factor against schizophrenia and other psychotic disorders. We hypothesize that individuals with the rare diagnose Isolated Congential Anosmia (ICA) are immune to PD given that they are born without OBs. If true, it would strongly support the theory that PD might start in the bulb. However, if one could identify even one single PD patient with an established ICA diagnosis with non-existing OBs, a so-called black swan, this would effectively falsify the hypothesis. In this commentary, we model the likely occurrence of such potential comorbidity and we postulate that it is possible to find this black swan; a finding that would falsify a salient hypothesis within the PD research community.

Parkinson’s disease (PD) is a neurodegenerative condition, characterized by motor, non-motor disability, and a reduced quality of life. Stimulated by a question raised by a person with PD, we posted an orienting survey on social media, asking whether there is possibly any “silver lining” (an upside) to having PD. Most respondents identified one or more positive changes, mainly a new focus in life, better coping skills, new activities, healthier lifestyle, and improved relationships with relatives and friends. This ability to perceive a silver lining of disease is in line with the concept of adversarial growth in illness, and positive health, which underscores resilience, self-management, and the ability to adapt. Importantly, not every respondent identified an upside to living with PD, so this is very much an example of personalized medicine. This is a delicate, difficult issue, and discussing the presence of silver linings may feel counterintuitive. However, exploring this issue may help people with PD and caregivers to better deal with the disease, and allow medical professionals to provide better support, to learn about coping strategies, to understand the degree of disease acceptance, and to enhance a healthier lifestyle. Further research should demonstrate whether addressing silver linings may impact positively on the outcome of PD and on the perceived quality of life. To facilitate this process, we have adapted a pre-existing silver lining questionnaire (SLQ-38) in light of the responses provided by people with PD, to offer a simple, feasible tool to further explore this issue in clinical and research settings.

Despite data supporting the rapid adoption of telehealth in the delivery of clinical care in North America, the implementation of telehealth visits in clinical research studies has faced critical barriers. These challenges include: (1) variations in state licensure requirements for telehealth; (2) disparities in access to telehealth among disadvantaged populations; (3) lack of consistency among individual Investigational Review Boards (IRBs). Each barrier prevents the systematic conversion of research protocols to include telehealth visits. The Parkinson’s Foundation and members of the Parkinson Study Group submit this Comment to highlight current challenges to implementing telehealth visits for clinical research studies. Our objective is to provide a consensus statement emphasizing the urgent need for regulators to standardize adoption of telehealth practices and to propose recommendations to reduce the burden for implementation in existing research study protocols.

Oleh Hornykiewicz (November 17, 1926–May 26, 2020), by demonstrating the loss of dopamine neurons in Parkinson’s disease, introducing the effort to treat the disorder with L-DOPA, and other innovative research, improved the lives of countless individuals and transformed neurology and medical science. Here we celebrate the life and great achievements of an outstanding scientist.