Parkinson’s Disease and Movement Disorder Society (PDMDS) would like to thank you for your interest in starting a support group for people with Parkinson’s. A support group is an informal gathering of people who share similar experiences, situations or problems. Support groups are a very good source of information about Parkinson’s disease and also offer social and emotional support to the patients, their caregivers and family members.
The following are some guidelines that facilitators would find helpful for starting a Parkinson’s disease support group:
- Identify a location for conducting the support group meetings. Possible meeting sites include NGO centres, religious institutions, community centres, hospitals, medical centres or school halls. Many of these places would be willing to offer their premises for non-profit community events and charitable causes.
- Set a regular time for the support group meetings. Most Parkinson’s disease support groups meet once or twice a month for about an hour. The frequency of the meetings would also depend on the resources available.
- Create a member database. Contact people with Parkinson’s disease and inform them about the support group. This can be done via personal contacts as well as by getting in touch with medical or allied health professionals and requesting them to give information about the support group to potential members.
- You could also publicize the support group by creating fliers containing the details of the support group (date, venue, timings). These fliers can be displayed at local schools, religious institutions, community centres and other institutions involved with social work.
- Consider making your first meeting a general information session on Parkinson’s. If possible, invite a movement disorder specialist or neurologist specializing in Parkinson’s to give an overview of the current treatment options and answer questions. If this type of professional is not available, the facilitator can provide general information on Parkinson’s disease, the various motor and non-motor symptoms involved, the various avenues for treatment available and the nature and purpose of a Parkinson’s support group.
- Maintain contact information for all of your members and remind everyone approximately a week before each meeting of the date, time and topic of the meeting.
- Although emotional support and sharing are a vital part of a Parkinson’s disease support group, members may be reluctant to share experiences. It is usually a good idea to have specific educational and informational topics for the initial meetings. This will also help build rapport among group members. Suggested topics include: the non-motor symptoms of Parkinson’s and their management, the importance of exercise and physiotherapy, the role of speech therapy in treatment of Parkinson’s, diet and Parkinson’s and the use of assistive devices for managing symptoms. Suggestions for speakers include: neurologists, physiotherapists, speech therapists, occupational therapists, psychologists and nutritionists. These sessions can include both information dissemination as well as discussion.
- A general outline for sessions has been provided in this booklet to assist facilitators in planning the content and activities for the support group meetings.
- If resources permit, you can even create a team of professionals to organize and conduct these support groups. An ideal team would consist of a physiotherapist, a psychologist and a social worker/co-ordinator.
PDMDS has been involved in the conduction of support groups for people with Parkinson’s for a long time. They have consistently stressed the importance of a multidisciplinary approach to the management of Parkinson’s.
Ways PDMDS can assist you:
- PDMDS can provide assistance by offering information useful for conducting support group meetings. They can guide facilitators in selecting content and activities for these meetings.
- PDMDS can direct individuals to the appropriate resource personnel for support group meetings.
- PDMDS also provides literature on various aspects related to Parkinson’s.
- Additionally, PDMDS can publicize your support group to interested parties through its website and newsletter. PDMDS can also help you network with other Parkinson’s support groups across the country.
PDMDS is currently in the process of developing a multidisciplinary treatment module that will assist lay people who wish to start a Parkinson’s support group. As soon as this module has been developed and evidence of its effectiveness researched, it will be available and distributed to people interested in starting Parkinson’s support groups.