key: cord-0746582-jy5ij4m8
authors: Subramanian, Indu
title: Virtual Parkinson Disease Support Groups in the COVID‐19 Era: Social Connection in the Time of Social Distancing
date: 2020-06-04
journal: Mov Disord Clin Pract
DOI: 10.1002/mdc3.12994
sha: a140a11bb580958aabf5f0a0f2ec24bcbceccf49
doc_id: 746582
cord_uid: jy5ij4m8

nan

I read with interest the viewpoint and editorial on COVID -19 published on April 6, 2020 [1, 2] . It points out the risk of social isolation in this vulnerable Parkinson Disease (PD) population but does not address a possible solution via virtual support group meetings.

Increased mental and emotional stress due to the barrage of negative stories in the media, lack of control and uncertainty of the future can lead to worsening of both motor and non-motor issues in PD. [3, 4, 5] ] We 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 counselling from day one 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 This article is protected by copyright. All rights reserved.

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 60-120 PWP and their caregivers are in attendance. Sessions are archived on youtube within hours of the group meeting so that patients can re-watch the sessions at their convenience. Sessions are held at noon for 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 20-30 minutes; Host interviews the speaker for 10-20 min; Question and answer for 10 minutes., 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 the patient and their caregiver 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 since the speakers themselves are remote. Additionally, this model can be replicated in other chronic disease states.

This article is protected by copyright. All rights reserved. 

MDS-Scientific Issues Committee. Impact of the COVID-19 pandemic on Parkinson's disease and movement disorders

Movement Disorders in the World of COVID-19

The Impact of the COVID-19 Pandemic on Parkinson's Disease: Hidden Sorrows and Emerging Opportunities

Shalash A; International Parkinson and Movement Disorder Society TelemedicineTask Force. The Promise of Telemedicine for Movement Disorders: an Interdisciplinary Approach

Stress exacerbates experimental Parkinson's disease. Mol Psychiatry

Accepted Article