Stop to Smell the Tulips: Parkinson Disease Awareness Month

Jill Giordano Farmer, DO, MPH

APRIL IS PARKINSON DISEASE (PD) AWARENESS MONTH, and I have always loved that it secured that spot on the calendar. The metaphor of spring and the symbol of the tulip are not lost on the clinicians who care for patients with PD and those who live with them. This April and this spring is even more symbolic as we come out of a year-long freezing episode that disrupted everyone involved in PD care. We know that coronavirus disease 2019 (COVID-19) has wreaked havoc on the PD community—uprooting routines, forcing isolation—and although having PD doesn’t increase the risk of contracting COVID-19, we know it increases the risk of a more significant clinical course. Results of a study of 358 people with PD showed those who had a higher COVID-19–related stressor load experienced more PD symptoms, and this effect was mediated by the degree of psychologic distress. Almost half (46.6%) of individuals with PD were less physically active since the pandemic began, and reduced physical activity correlated with worsened PD symptoms. Symptoms that worsened the most were rigidity, fatigue, tremor, pain, and concentration. The presence of neuropsychiatric symptoms (eg, anxiety and depression) before the pandemic, as well as cognitive dysfunction and several personality traits, predicted increased psychologic distress during the pandemic.¹

It has been hard.

But looking ahead, as spring is blossoming, we can also take a nice deep breath and look at the changes that, although born out of necessity, can now be enjoyed as a convenience. The virtual world has much to offer and going forward when it is not a requirement but an option will afford much more access more readily and easily to specialists, to community resources, and to PD education. Telemedicine is changing the landscape of medicine. According to the Centers for Disease Control and Prevention’s data, the 154% increase in telehealth visits during the pandemic compared with the same period in 2019 is a direct correlate to telehealth policy changes and public health guidance.² There is proposed legislation to continue these policies going forward. It is widely believed telehealth will continue to be an option for those that prefer it but getting back to face-to-face interactions in the office will also be refreshing. Patient education programs are now available on-demand from the convenience of wherever you want to be, but we are all looking forward to the community and comradery of doing these in person again soon. What is nice is that we will have the option of both, and options expand our experiences. As this month of awareness awakens our focus on the future and what is to come, again, the PD community does not disappoint. There are close to 3000 clinical trials investigating the treatment and pathology of PD currently. There is a shift of focus from treating the symptoms of the disease to figuring out how to actually alter the pathology to change the clinical course and modify it for the better through various established and novel mechanisms.

In this issue, we will look at 2 opportunities on the horizon. Deep brain stimulation (DBS) has been around since the 1970s, and currently, about 150,000 people are implanted with a DBS device. In the past few years, the technology of DBS has entered a renaissance period. In this space, Medtronic has had to make room for Boston Scientific and Abbott device companies. This increased diversity has led to smaller rechargeable batteries, the utilization of different modes of stimulation through voltage or current, and the ability to precisely target the area of the brain with directional leads. In this issue’s cover story, Atom Sarkar, MD, PhD, director, functional neurosurgery, Global Neuroscience Institute, explores what is on the horizon not just through the hardware of the device but the software with sensing and reactive technology to adapt to changes in the brain that precede symptom return and modulate the stimulation accordingly.

The changes coming to the surgical interventions are matched by changes coming to the medical management. Smaller pumps that can deliver continuous infusion of carbidopa/levodopa just under the skin, without a procedure, are currently in phase 3 clinical trials. While the symptomatic improvement this can bestow on patients is exciting, it still lacks the ability to modify the disease course in some way. That is the next frontier in research and the focus of Charbel Moussa, MBBS, PhD; Fernando Pagan, MD; and Yasar Torres-Yaghi, MD, of Medstar Georgetown University Hospital, in their feature that considers the pipeline of disease-modifying therapies and the hope they hold.

While we are all experiencing fatigue—COVID-19 fatigue, caregiver fatigue, clinician fatigue—we are no strangers to it. As a community, patients with PD and those that care for them are resilient to fighting this fatigue, and the beauty of Parkinson Awareness Month is that it gives us a rejuvenating pause during the spring thaw, and reminds us to stop and smell the tulips, and with a deep breath of fresh air, keep moving forward.

REFERENCES
1. van der Heide A, Meinders MJ, Bloem BR, Helmich RC. The impact of the COVID-19 pandemic on psychological distress, physical activity, and symptom severity in Parkinson disease. J Parkinsons Dis. 2020;10(4):1355-1364. doi: 10.3233/JPD-202251.
2. Koonin LM, Hoots B, Tsang CA, et al. Trends in the use of telehealth during the emergence of the COVID-19 pandemic—United States, January–March 2020. MMWR Morb Mortal Wkly Rep. 2020;69:1595-1599. doi: 10.15585/mmwr.mm6943a3.