Organized gatherings of people who have common interests and concerns. There are support groups for people with Parkinson’s and for caregivers and family members of people with Parkinson’s. Many support groups are open to anyone who wishes to attend meetings; others are more restrictive. Various organizations sponsor support groups. Many are affiliated with Parkinson’s organizations such as the national Parkinson foundation and the American Parkinson disease association. Hospitals, medical centers, neurology practices, senior centers, and churches also sponsor Parkinson’s support groups. Appendix I lists resources for support groups.
Support groups provide a safe forum for sharing experiences, concerns, fears, and frustrations. Those who attend often find this process of exchange both informational and helpful for relieving stress, a chance to vent their feelings and emotions. Sometimes people with Parkinson’s are reluctant to join support groups because their situation is stable and they do not want to hear about the symptoms that other people are experiencing, fearing the prospect of facing the potential of such symptoms themselves. But the course of Parkinson’s is widely variable, and most people do not experience the full range of possible symptoms. Other people appreciate the opportunity to talk freely, because they sometimes cannot with family members and friends, and draw encouragement and reassurance from their involvement with a support group. Talking with others who live with
Parkinson’s helps to give a broader perspective of the disease and the many ways in which it is possible to adjust and adapt to have a fairly normal experience of life. In support groups, too, people share their experiences and information about various treatment approaches, clinical research studies, and investigational treatments.