What’s so great about support groups? Whether you are newly diagnosed or have been living with Parkinson’s disease (PD) for years, there are many reasons to connect with a support group. This is true for care partners as well. And it is never too soon or too late to find a support group that works for you. Here are the critical benefits a support group can provide, according to the American Parkinson Disease Association (APDA) – and how to find the right group for you.
Emotional support: Support groups offer a safe and understanding environment where people can express their feelings, fears, and frustrations without judgment. Sharing experiences with others who “get it” because they are facing similar challenges can alleviate feelings of isolation and provide a sense of belonging and connection. We’ve seen group members develop true friendships and a build support network that extends beyond the regular group meetings.
Information and education: Support groups often have guest speakers and healthcare professionals who provide helpful information and advice, and by staying informed, you can make more informed decisions about your healthcare, explore new therapies, and gain a better understanding of the disease.
Peer learning and empowerment: Hearing stories of others’ journeys, challenges, and successes can provide inspiration and hope. You can also benefit from hearing practical tips and coping strategies for managing symptoms and maintaining a good quality of life from fellow group members.
You can also read what three APDA support group leaders have to say about the positive impact of support groups.
Where to find support:
Stanford Parkinson’s Community Outreach and the APDA Information & Referral Center at Stanford provide a list of Parkinson’s support groups in Northern California. Many support groups have returned to in person meetings. Some groups meet virtually.
Care partners need support too! While care partners often attend regular support groups, there are some that specifically address the needs and concerns of care partners. Stanford Parkinson’s hosts several PD caregiver groups on the San Francisco peninsula. They are on this list of PD caregiver-only groups in Northern California. Again, some meet in person and others meet virtually.
Virtual and video support groups are perfect if you don’t live near an in person group, or if it is challenging to attend a group in person due to transportation, mobility issues or time constraints. Several Parkinson’s organizations host video support groups that welcome members from anywhere in the country. Some are even focused on supporting:
- adult child PD caregivers
- people who have had or want to know more about Deep Brain Stimulation
- people with Parkinson’s who have no primary care partner or who are “Flying Solo”
- Chinese, French, or Spanish speakers
- those grieving the loss someone who had PD
- the newly diagnosed
- groups exclusively for men or women with PD
- those with young onset PD
You can also find an online community through APDA’s partnership with Smart Patients.
You may benefit from the insights and advice shared by a trained nurse who served as her mother’s caregiver and advocate for more than 20 years.
Don’t be afraid to ask for help and get the support you need. The sooner you connect with a support group, the sooner you can start benefiting from the information and camaraderie. If you are having difficulty locating a support group in your area, find your local APDA Chapter or Information & Referral Center, or call the APDA helpline at 800-223-2732.
If you have been diagnosed within the past five years, ask if there is a PRESS program near you. PRESS is APDA’s signature psychosocial support group, perfect for those who are just getting started on their PD journey.