If you're feeling frustrated about life with Parkinson's disease, being part of a support group can be one of the best ways to reduce stress and connect with others who can relate to your experience. Care partners and family members also benefit from sharing questions and concerns with like-minded others.
Parkinson's Support Groups
Many resources are available to help you find a support group, including your neurologist or physician (or a member of his or her office staff), local hospitals (community outreach or similar services), community calendars in local newspapers, and websites of national Parkinson's disease organizations.
Not all support groups are right for everyone, however. For starters, they come in different formats, ranging from large, formal meetings to smaller "living-room" get-togethers. If you don't like the first group you find, it's worth looking for one that suits you better. If you can't find a group you like in your area, consider starting one. If you are unsatisfied with the available options, you're probably not the only one feeling that way.
Figure out a format for the meetings. Will there be one "leader" who facilitates discussions or will members take turns hosting the meeting? From time to time, try to schedule guest speakers such as area neurologists and allied care professionals, like physical therapists and nutritionists. If there are exercise groups for people with Parkinson's in your area, invite them to give a demonstration and share their services. Of course, leave plenty of time for simply chatting about life with Parkinson's disease, too.
Consider joining or starting an online support group. If you live in a very small town or your schedule is too busy to attend meetings, an online support group could help you connect.
Websites, internet groups and forums serve as online support for many patients. They can be informative and inspiring, and often alleviate the feeling of isolation that can make life with Parkinson's more difficult. It's often possible to add to the conversation at whatever time works for you, allowing you to participate if you have a busy schedule.
Support groups aren't for everyone. If they don't appeal to you, there's no need to force it. If you were involved in community, religious or hobby-based organizations in your life before Parkinson's, keep up those ties and friendships. In addition, educating yourself about Parkinson's, and getting involved with local or national Parkinson's organizations, can be ways to meet people who share some experiences with you without joining a support group.
The American Parkinson Disease Association provides information and referral, education and support programs, health and wellness activities, and other events to facilitate a better quality of life for the Parkinson's community across the country.
The Duke Movement Disorders Center is proud to participate in a variety of events to support and educate individuals with Parkinson's and their care partners, including regular support groups, introductory programs to provide basic information on Parkinson's, workshops for couples, and monthly singing and communications workshops. Click on the choices below to learn more about each of our upcoming programs.
Parkinson's Support Groups
Patients diagnosed with Parkinson's disease, as well as their care partners, are welcome to attend the Durham Parkinson's Disease Support Group, held from 10:30 a.m. to noon on the fourth Tuesday of every month. This free support group, sponsored by the Parkinson Foundation, is open to all (you do not have to be a Duke patient to attend).
Due to the ongoing pandemic, all support groups are now being held online. We hope that you can join us from your living room or other safe location. For more information, or to join, contact Allison Allen, LCSW, at 919-681-2656, or allison.m.allen@duke.edu.
People with YOPD and their carepartners are invited to participate in conversations and support focusing on parenting, careers, relationships and other topics unique to this community. The group will be held monthly on the 1st Wednesday of each month from 7-8:30 p.m. It will be virtual for now, with the hope to return to in person soon! For more information or to find out if this group is a good fit for you, please contact Allison Allen, LCSW (allison.m.allen@duke.edu) or Anne Kosem, LCSW (anne.kosem@duke.edu) or (919) 681-2656. Download a flyer for this program here.
The Huntington's Disease Society of America (HDSA) and Duke Health hold bimonthly support groups for individuals diagnosed with or at-risk for Huntington's Disease and their carepartners. You do not have to be a Duke patient to attend. Because of the ongoing COVID-19 epidemic, these meetings are being held online for the foreseeable future. Please join us from your living room or other safe location. For more information, email Lacy Rardin, LCSW, at Lacy.Rardin@duke.edu.
If you are living with a movement disorder (or are a caregiver), there is a wealth of educational and support programs in the Baltimore area that can help you learn more about your condition and network with others. These workshops, seminars, singing groups and dance and exercise programs support the well-being of all local families touched by movement disorders.
Thanks to the energy and commitment of many individual volunteers, PESGSC has grown to become the largest non-profit Parkinson's organization in the Delaware. Our volunteers, who come from all walks of life, have one common goal: to provide help and support to those living with Parkinson Disease as well as their families and caregivers. Make a donation or contact us today to find out how you can help make a difference!
You may prefer the online support group experience, or you may feel comforted by seeing other people in your situation face to face. Beyond that, you might find that groups that tend to focus on particular issues or even people in certain stages of life might meet best meet your needs.
Some in-person groups are small, others are large. Some groups meet during the day, while others gather in the evening or even on the weekend. Some in-person groups meet in a community-based setting, like a YMCA, a library, or a church basement, while others may hold meetings in a hospital conference room, a clinic, or a rehabilitation center.
Meanwhile, online support groups also vary in size and in demographics. Some groups have been around a long time, with members who have formed friendships over the years, while others may be relatively new groups with people who are still getting to know each other.
First, contact the facilitator and ask about the group. Try to learn as much as you can about the group culture and what will be expected of you. Some groups will assign you an informal buddy to help get you acclimated to the group, so you might ask the moderator about that possibility.
COVID- 19 Update: Many support groups have been cancelled to help contain the spread of COVID-19 and keep our community safe. Contact your local group facilitator to learn more about cancellations in your area.
This Huntington's Disease support group is held the second Saturday of every month at 10 a.m. (CT) via Zoom. On odd months, it's a caregiver support group; on even months, it focuses on general HD support. Register to join the group and contact Emily Zivin, LCSW, at emily.zivin@northwestern.edu for more information.
Please join Seth Rotberg as he shares his HD journey. This will be an interactive session for individuals who are asymptomatic gene-positive. The general HD support group will follow this education session. Please register in advance.
Please join Emily Zivin as she provides an interactive education session for couples to talk about their HD journey together with other couples in the community. The general HD support group will follow this education session. Please register in advance.
To locate Huntington's Disease support groups in New England, please review the list below, use the Huntington's Disease Society of America (HDSA) support group locator, or call the HDSA New England Region office at 978-505-5588.
PD treatment is approached through a combination of pharmacological, surgical, and lifestyle/wellness approaches. The concept of diet and exercise as medicine has increasingly become an integral part of PWP counseling from day 1 of diagnosis. There has been a huge emphasis on early institution of physical therapists, daily exercise, group classes, and support groups. PWP have felt empowered to help their own disease by staying motivated and keeping involved in a number of activities prescribed to them by their health care team. Patients look forward to engaging with their therapists, yoga, and boxing instructors. Many patients feel a sense of purpose and connection through caring for their grandkids or through volunteering. The sudden need to socially distance has literally ripped these therapeutic lifestyle strategies away from our patients overnight. PWP and practitioners alike have been left to scramble to find ways to fill this huge void in their lives. The need for social distancing has put a tremendous strain on caregivers who were already at risk for burning out, getting isolated, and getting sick themselves.
This support group is designed for people with Parkinson's, their spouses and other support individuals. It is intended to provide education, advice and awareness of community services available in dealing with this chronic disease.
Facilitators receive special one-on-one orientation, administrative support, as well as ongoing training opportunities to ensure the best possible environment for the group. If you live in a community that does not have a local support group listed, please call Nia to discuss ways to get one started! 800-426-6806
 38c6e68cf9