Parkinson’s disease is a movement disorder, i.e., a disease that affects a person’s ability to produce and control body movements. The signs of Parkinson’s disease are progressive, meaning they get worse as time goes on. By the time the symptoms appear, the disease can be quite advanced. A diagnosis of Parkinson’s disease can be overwhelming. Patients can gain support by drawing on all available resources, including medical care providers, family members, and in-person and online support groups and discussion forums.
The first place to turn for Parkinson’s support is the primary care physician (PCP). The PCP can provide valuable education about Parkinson’s disease in general and patient-specific concerns in particular. A PCP should also be able to provide referrals to medical specialists and other community- and hospital-based Parkinson’s support resources such as patient and caregiver support groups, nutritional counselors, and exercise programs.
Hospitals, senior centers, and assisted living communities frequently offer Parkinson’s support opportunities to community members in a group setting. These opportunities may include educational presentations on how to understand and cope with the disease, caregiver support sessions, social activities, support therapy, and Parkinson’s exercise groups. The best way to find out about such groups is to ask the PCP or contact a senior center or assisted living facility program directors directly.
Family members can also be a good source of Parkinson’s support. Information is power when it comes to understanding disease, but there is sometimes too much information to absorb. Bringing a loved one to medical appointments for an extra set of ears, to take notes, and to ask questions that may not occur to the patient can help make the most of time spent with the PCP or specialist. Family members can also provide practical Parkinson’s support by helping with the tasks of daily living, such as cooking and driving, when symptoms progress to the point that such tasks become a challenge to the patient.
Another valuable source of Parkinson's support includes organizations such as the National Parkinson Foundation (NPF), the Parkinson Disease Foundation (PDF), and the Parkinson Foundation of Canada (PFC). These organizations offer online and print patient and caregiver education information on symptoms, diagnosis, and treatment. Most also maintain lists of regional and local support groups and online discussion forums for patients and caregivers.
Another organization, Worldwide Education and Awareness of Movement Disorders (WE MOVE), offers a treatment center and physician finder tool on its website as well as a list of contact information for Parkinson’s support and advocacy organizations for countries around the world. To display the international list of Parkinson’s support and advocacy organizations, click the “Support” tab on WE MOVE’s website, and select “Parkinson’s disease” from the drop down menu.