Virtual Parkinson's Disease Support Groups in the COVID-19 Era: Social Connection in the Time of Social Distancing.

Abstract

I read with interest the viewpoint and editorial on coronavirus disease 2019 (COVID-19) published on April 6, 2020.1, 2 They point out the risk of social isolation in this vulnerable Parkinson's disease (PD) population, but they do not address a possible solution via virtual support group meetings. Increased mental and emotional stress attributed to the barrage of negative stories in the media, lack of control, and uncertainty of the future can lead to the worsening of both motor and nonmotor issues in PD.3-5 I describe here a virtual support group intervention for patients with PD (PWP). PD treatment is approached through a combination of pharmacological, surgical, and lifestyle/wellness approaches. The concept of diet and exercise as medicine has increasingly become an integral part of PWP counseling from day 1 of diagnosis. There has been a huge emphasis on early institution of physical therapists, daily exercise, group classes, and support groups. PWP have felt empowered to help their own disease by staying motivated and keeping involved in a number of activities prescribed to them by their health care team. Patients look forward to engaging with their therapists, yoga, and boxing instructors. Many patients feel a sense of purpose and connection through caring for their grandkids or through volunteering. The sudden need to socially distance has literally ripped these therapeutic lifestyle strategies away from our patients overnight. PWP and practitioners alike have been left to scramble to find ways to fill this huge void in their lives. The need for social distancing has put a tremendous strain on caregivers who were already at risk for burning out, getting isolated, and getting sick themselves. Virtual support groups using video-conference technology serves as model intervention to keep PWP connected, educated, and empowered. The model that we have adopted includes the following: partnering a with a PD advocacy organization that has used zoom technology in the past. Patients have the ability to learn and troubleshoot the zoom technology for 30 minutes before each support group session. The host is a neurologist with expertise in PD who hosts each session 2 times per week. An average group size of 60 to 120 PWP and their caregivers are in attendance. Sessions are archived on YouTube within hours of the group meeting so that patients can rewatch the sessions at their convenience. Sessions are held at noon for the convenience of the speakers and attendees. The host interviews the speakers in the following format: introduction with waving together, speaker gives slides or talks about a topic for 20 to 30 minutes, host interviews the speaker for 10 to 20 minutes, question and answer for 10 minutes, and close with waving together (Table 1). The goal of this virtual support group is to prevent the downward spiral of worsened PD symptoms and quality of life for both patients and their caregivers that may be induced by the consequences of COVID-19 and social distancing. This model of virtual support groups can be emulated anywhere in the world because the speakers themselves are remote. In addition, this model can be replicated for other chronic diseases. I acknowledge the Parkinson and Movement Disorders Alliance, Sarah Jones, and Andrea Merriam for their help. Ethical Compliance Statement: No institutional review board or consent was obtained since there was no study. I confirm that I have read the Journal's position on issues involved in ethical publication and affirm that this work is consistent with those guidelines. Funding Sources and Conflicts of Interest: No specific funding was received for this work. The author declares there is no conflict of interest relevant to this letter. Financial Disclosures for the Previous 12 Months: There are no financial disclosures for this letter. The author has received honorarium from Acorda and Acadia in the past 12 months.