A diagnosis of Parkinson’s disease can bring with it a wide range of emotions that may include shock, fear, denial, sadness and anger. Although time may lessen the intensity of such feelings, they likely will not go away completely.
A strong social support network can help those with Parkinson’s address the long-term emotional impact of a PD diagnosis. Support from a variety of formal and informal sources can have real benefits, including improvements in mood, ability to cope and reduced levels of stress.
Although these groups can be a good source of social and emotional support, many Parkinson’s support groups focus on helping their members learn how to live well with this chronic illness. PD support groups often feature guest speakers or a specific educational topic each month. While some groups are facilitated by professionals such as social workers or nurses, other groups are lead by people with Parkinson’s or their care partners.
Each support group has its own personality. If possible, visit several groups in your area to find the one that best suits your needs. There are also several Internet based groups and list servs available.
To find support groups in your community, please contact PDF’s Parkinson’s Information Services (PINS) at (800) 457-6676 or firstname.lastname@example.org.
Are you a support group leader? Please consider calling PDF at (800) 457-6676 and to speak with our communications department about being listed on our National Support Group List. Please note this list is not published. This list enables us to provide you with free educational materials for your events and members. Also, with your permission, it allows us to keep your information on file and provide it to people with Parknison's and caregivers who call our helpline looking for peer support in their geographic area.
Professional Counseling Services
Adjusting to the diagnosis of Parkinson’s disease and the necessary lifestyle changes it brings can be challenging. A mental health professional specializing in chronic illness can help you educate yourself about the disease, learn new coping skills, and find additional local resources. Many professionals are trained in stress management techniques as well as therapies to reduce depression and anxiety.
To locate a licensed professional in your area you may wish to contact the American Psychological Association www.apahelpcenter.org, the National Association of Social Workers www.helpstartshere.org, or the Association of Marriage and Family Therapists at www.therapistlocator.net.
Case Management Services
If you are 60 years of age or older, you may qualify for a variety of federal, state and local programs ranging from home-delivered meals to homemaker services and help choosing the insurance plans that are best for you. The US Administration on Aging provides the Eldercare Locator www.eldercare.gov, a website that will help you find your local provider for these programs and services.
Professional Geriatric Care Managers (PGCM) can also be of great help, especially if you live alone or at a great distance from other family members. Most PGCM’s have the ability and knowledge to serve people of all ages living with chronic conditions. They offer a wide range of services that include such things as managing a move, arranging in-home care, and assisting with financial, legal, and medical matters. Their services are primarily on a private pay basis. To locate a PGCM in your area contact the National Association of Professional Geriatric Care Managers at www.caremanager.org.
Starting a Support Group
Category: Finding Support
Resource Type: Publications
Publication Date: 2011
Author: Parkinson's Disease Foundation
Publisher: Parkinson's Disease Foundation
Toll Free: (800) 457-6676
Associated URL: www.pdf.org/en/factsheets
Address: 1359 Broadway, Suite 1509
City: New York Zip: 10018
State: New York
This fact sheet offers in-depth information and practical tips on starting a support group.