Parkinson Association Of The Carolinas Virtual Support Group
We know in person meetings may not be available in your area and, often times, finding meetings that fit our schedules is difficult, so we are now offering a FREE monthly Virtual Support Group ONLINE!
Our next scheduled meeting will take place on Wednesday, November 3rd at 2:00 P.M.
Join the PAC team Holly Kennedy and Janet Ceraldi to discuss Fall Prevention Considerations for People with Parkinsons Disease.
View Support Group Meetings Map in a full screen map.
Please contact a PAC team member for more information on support groups including contact information and current status at 245-2786.
If you would like to submit your support group for public listing or would like to submit changes to a listed support group, please contact .
Why join a support group?
People who have been through, or are going through, a similar circumstance can do more than sympathize with you they can relate to your situation and keep you from feeling like you are alone. Support group members offer firsthand insight into many aspects of navigating the disease.
For some people, the most difficult step is walking through the door, but most find that once they make the decision, the experience is helpful and supportive. Remember, a support group is not a substitute for medical treatment or professional counseling and it is not a replacement for family and friends.
When do support groups meet?
What can PAC do to help a support group?
If You Are A Discussion Moderator
If youre a moderator or a facilitator for a support group for people with Parkinsons disease, or family members or caregivers for people with Parkinsons disease, you play a very important role in helping the group to be a success. You can start by setting an agenda for each meeting so everyone knows what to expect.
A few other tips for getting the conversation flowing:
- Start with opening questions that help people to settle in and get comfortable.
- Make sure everyone knows the ground rules and expectations.
- Give everyone the opportunity to speak and to be heard.
- Encourage members to listen when others are speaking.
- Be respectful if some people choose not to share.
- Use a handheld microphone in case some people are soft-spoken.
- Develop some strategies to handle situations in which a few people monopolize discussions.
- Ask group members to brainstorm topics for future discussions or suggestions for guest speakers.
You also might check out resources from organizations like the Parkinsons Foundation that can help you plan your meetings, encourage participation, and foster the connections that are so vitally important to support group members.
Finding The Right Group
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.
Many resources are available to help you find a support group, including your neurologist or physician , local hospitals , 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.
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Parkinsons Foundation Mid Atlantic:
This National PD organization has a local presence in the DC and Baltimore area. Our favorite feature of this website is the Parkinsons Library. You can search topics that you are interested in or pick from a wide selection of topics. More information than you could ever imagine, including an entire section devoted to caregivers.
Here Are Some Additional Resources That Can Help You In Your Care Partnering Role:
- Join APDAs new online community support forum with Smart Patients.
- Visit the Ask the Doctor section of our website. Our staff of healthcare professionals specializes in all aspects of Parkinsons disease and will provide resources to address your questions and concerns.
- Download our publication called Becoming a Care Partner to learn about ways you can handle some of the challenges of being a care partner.
- When a parent has Parkinsons disease, the couple may wonder how to talk to their children about the diagnosis. My Mommy Has PD.But Its Okay is a guide for young children about Parkinsons disease.
- For information on brain donations please visit The Brain Support Network.
- Improving the quality of life for your loved one by connecting them to a palliative care team that offers pain management and in-home services within the community. For more information please visit Get Palliative Care.
If you need help and you do not see what you are looking for on our website, please call 800-223-2732, 7 days a week, for referrals and information.
APDA is here to support you.
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What Is Are Parkinsons Support Groups
Parkinsons support groups are a gathering of people with common experiences or concerns who provide each other with encouragement, comfort, and advice. Support groups are also a place to give and receive emotional and practical support to others who are in the same situation. Parkinsons support group meetings provide you with a chance to:
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Near Northwest And Northwest Suburbs
Arlington Heights Senior Center1801 W. Central Road, Arlington Heights, ILCaregiver Support GroupKorean American Parkinsons Disease Support Group Parkinsons Disease Support Group
Auberge Memory Care5520 Lincoln Ave., Morton Grove, IL Parkinsons Disease Support Group/Caregiver Support GroupFree to attendFor more information email: Lorry Immergluck at
Barrington Area Council on Aging6000 Garlands Lane, Suite 100, Barrington, ILMultiple Support Groups:Parkinsons Disease Support GroupFor more information call: Bonnie Scherkenbach 8748810472
Family Alliance12555 Farm Hill Drive, Suite 800, Huntley, ILParkinsons Disease Support GroupFree to attendFor more information call: Linda Strueber at 815-3383590
Frisbie Senior Center52 E. Northwest Highway, Des Plaines, ILParkinsons Disease Support GroupFree to attendFor more information call: Nancy Flowers at 847-6533134
Presence Health/St. Joseph Hospital77 N. Airlite Street, Elgin, ILParkinsons Disease Support GroupFree to attendFor more information call: Susan Peterson at 8476222095 or Bev Kittler at 847-463-0859
State Banks of the LakesThe Community Room1906 Holian Drive, Spring Grove, ILMcHenry County Parkinsons Support GroupFree to attendFor more information call: Kurt Dembski 815-207-1260
YMCA 300 W. Wise Road, Schaumburg, ILParkinsons Support GroupFor more information call: Timothy Reed at 630-917-7617
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Brighton And Hove Branch
Our group offers friendship and support locally to people with Parkinsons, their families and carers, contact us to find out more.For information and advice on Parkinsons, or for emotional support, call the Parkinsons UK helpline on
Contact
Contact
Due to the coronavirus pandemic, our in-person activities were suspended. Some of our activities have moved online and we will gradually return to some in-person activities.
We know that support and friendship from group activities is important and were here to support you. You can get in touch with your local group for up to date information about activities using the contact details on this page.
American Parkinson Disease Association :
There are no local chapters nearby with this national organization, but it is a wonderful resource if you are looking for more information on Parkinsons Disease and research.
They have put out a Parkinsons Disease handbook and other free downloadable booklets you can find HERE.
You can also find an assortment of webinars on various topics HERE.
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Support Group Dedicated To Parkinson’s Disease
Many support groups dedicated to Parkinsons disease meet regularly throughout Quebec. These groups, intended for people living with the disease as well as their loved ones, allow for the exchange of information and ideas concerning the most common problems encountered.
Support groups are also meeting places that help you realize that you are not alone in living with your condition. You will certainly find a support group that suits you in your community.
The age and stage of illness of the members are often factors that define the identity of the group. Try to join a group that suits you. If you cant find a group that suits you, contact us . We can help you start your own Parkinsons support group.
Starting A Support Group
Some tips to help you start your own support group:
Choose the group’s target audience.Is it just for people with Parkinson’s, or are care partners and family members invited as well? If you live in a larger city, you can consider gearing the meeting toward a more specific group, such as people with young-onset Parkinson’s disease.Churches, community centers, libraries and other spaces with meeting rooms are great choices. Because members may want to share personal stories, more public spaces like coffee shops and restaurants may not be ideal. You can also decide if your group should meet monthly, twice a month or even weekly.
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.
Spread the word. Ask your doctor if you can share flyers in the office, and let your local hospitals know about the group, too. Bring flyers to libraries, coffee shops and other community spaces. If you’re tech-savvy, start a Facebook group or page, or make a basic website. These are also good ways to keep in touch with members.
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Parkinsons Support Group Topics
80 a share for this yr. Some of the topics discussed in parkinsons disease support groups let in:. Paraquat is prohibited in eec not only because of its extremely deadly nature but as well because its coupled to parkinsons disease. approach: general tangible therapy, exercise, tread-wheel, cuing, dance, and martial humanistic discipline trials: 5 participants: n=202 .
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Starting A New Peer Support Group
Fight Parkinsons is happy to work with individuals who are interested in starting a new Peer Support Group for people living with Parkinsons.
While Fight Parkinsons is unable to provide financial support or an ongoing facilitator, we are able to support a group through:
- Regular updates and information from Fight Parkinsons
- Regular visits from a member of the Fight Parkinsons Health Team
- Telephone and email assistance
- A dedicated Peer Support Coordinator whose role it is to liaise with and support you in your role as support group facilitator
- Peer Support Leader training
To discuss the possibility of setting up a new Peer Support Group in your area:
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All Groups Are Currently Meeting On Zoom See Below For Details
PDSupport GroupMeeting every Thursday from 4:00pm 5:30pm Description: These free weekly support group meetings are held from 4:00 pm-5:30 pm for people who have been diagnosed with Parkinsons disease or Parkinsonism. The meetings are facilitated by Roslyn Kleinsinger, LCSW .Click here to register. Please note that you may be required to register even if you have attended a previous meeting. Email or call 479-6119.
Advanced Care Partners Support GroupMeeting 3rd Thursday of the month from 3:00pm 5:00pm Description: This is a gathering where participants speak frankly about concerns and challenges in caring for loved ones with long term to advanced PD symptoms. Open to family caregivers and care partners only. Self-facilitated. Pre-registration required when attending for the first time. Email or call 479-6119.
Mild/Moderate Care Partners Support GroupMeeting 2nd and 4th Wednesdays of the month from 3:00pm 5:00pm Description: This Care Partners Support group addresses the needs of those partners who are caring for someone with mild to moderate symptoms. All care partners are welcome. Self-facilitated. Pre-registration required when attending for the first time. Email or call 479-6119.
Aware In Care Parkinsons Hospital Kit
The Aware in Care Parkinsons hospital kit protects, prepares and empowers people with Parkinsons before, during and after a hospital visit. It contains tools and information to share with hospital staff during a planned or emergency hospital visit.
An Aware in Care Ambassador may be able to visit your group to present about preparing for a hospitalization. Contact us at for more information
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Parkinsons Movement Disorder And Alliance
Key Specs
- Membership fee: Free
- Structure:In-person support groups, virtual Zoom support groups, chat forums/message boards
- Details: Offers both in-person and virtual support groups, educational videos and resources, and support is available for care partners
- Things to do: A survey needs to be completed first before you can participate in the online community
The Parkinsons Movement Disorder and Alliance is a nonprofit organization that focuses on characteristics like empathy, creativity, resiliency, and shared learning.
It also has a wealth of support and educational services. Aside from online programming and Zoom support groups, this organization also offers various in-person support groups located throughout the country.
Additionally, the organization features numerous educational programs like “Lunch with Docs,” in which individuals can meet with a movement disorder specialist virtually over lunch from the comfort of their own home.
There are free workshops across the country called In Sync for supporting and teaching people interested in developing their skills as a support group leader.
There, people can learn skills and build confidence in designing and leading their own support group for Parkinsons disease or other movement disorders. Leadership experts and healthcare professionals also provide guidance through informational presentations.
Topics You Might Discuss
A support group may discuss a variety of topics centered around living with Parkinsons disease, including accepting your diagnosis and finding ways to live your best life, as well as issues that may be important to caregivers. That might include:
- challenges you have encountered and how to handle them
- adaptations youve had to make in your daily life, such as with housework or grooming
- how you deal with feelings of loneliness or grief
- your experiences with depression and anxiety
- issues related to sexuality and relationships with spouses or partners
- relationships with adult children or other relatives
- side effects from medications how they have affected you
- new research into treatments
- talking to a loved one about the progression of symptoms
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Attending A Peer Support Group For The First Time
Often the most difficult step is walking through the door for the first time. Once this decision is made, most people find that attending a Peer Support Group was helpful and supportive.
If you are particularly nervous, have a chat to the group facilitator either on the phone or immediately before the meeting. They can help ensure you feel welcome. You may even like to bring a friend or family member along for moral support.
There are a couple of things to keep in mind if you are attending a Parkinsons Peer Support Group for the first time:
- Peer support is not a substitute for medical treatment or professional counselling, and it is not a replacement for family and friends
- Parkinsons Peer Support Groups are open to people at all stages of the illness. It can be confronting to attend a group where there may be people with different or more advanced Parkinsons symptoms than yours. Remember that Parkinsons is progressive and that everyones symptoms and experience of Parkinsons is different, so one persons experience is not an indication of what your experience will be
- In some areas Parkinsons Peer Support Groups are also open to individuals with conditions that are similar to Parkinsons but have little support of their own .
- A Parkinsons Peer Support Group is a welcoming and accepting environment, where members individuality, privacy, and life experiences are respected.
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What Makes A Good Parkinsons Support Group For Caregivers
Its hard to know exactly what makes a good Parkinsons support group for caregivers, as every person is different. Some find it helpful to sit around and talk about what theyre experiencing, while others prefer to take a more proactive approach.
If they are not constructive, they will bring you down. A good support group always has new ideas that can make life more enjoyable.
The sign of a good support group is one that makes you feel uplifted or positive when you leave. The group should be open, welcoming and friendly. There should be a diverse mix of people of all ages from a variety of backgrounds, all willing to share their stories and help others. If you dread your meetings or feel downhearted at the end of them, these are probably signs you should find a new support group.
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Dailystrength Parkinsons Disease Support Group
Key Specs
- Details: Easy-to-use interface, small and intimate support group, and provides access to doctors
- Things to consider: It’s not a very active group
The DailyStrength Parkinsons Disease Support Group is a free and welcoming online support community with more than 400 members and 3,000 posts.
The mission of the group is centered around empowering and inspiring each other to overcome PD-related and life challenges.
Overall, the DailyStrength website is easy to navigate, and registration is straightforward and quick. Posts are informational, practical, and thoughtful. This is, perhaps, a good place to start for people looking for a smaller, more intimate online support group that is not overwhelming or associated with a national organization.
Even though the site is not moderated, to keep the support group safe and positive, DailyStrength has a set of guidelines that the members are asked to follow.