Orange County Parkinsons Disease Support Groups
Many Orange County support groups are transitioning back to in person meetings following the Covid 19 Pandemic. Be sure to check with a group to find out their latest details before attending.
Whether you are newly diagnosed with Parkinsons or have been living with PD for years, it helps to talk to others who are going through the same thing. Not every group is right for every person. They may serve certain populations also so we urge you to visit more than one group if you arent feeling a comfortable match. Most of Orange Countys Parkinsons Disease support groups are not currently meeting in person due to the Covid-19 pandemic. There are several groups that are meeting virtually. Please see our events page for current virtual meetings.
Before visiting any of the support groups below, it is advised that you verify the time and location with the contact. To find groups outside the Orange County area, check the Resource page on the Parkinson Movement Disorder Alliance site.
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At This Time All Support Groups Are Only Available Remotely Via Zoom
PWP support groups provide opportunities for participants to share personal experiences and feelings, coping strategies, or firsthand information about medication, exercise, or other treatments. Each group is led by a facilitator with Parkinsons or a caregiver. If you are unsure if a support group is right for you, or if you have any questions about one or more of these groups, please call 250-360-6800, or email us at and we will connect you with the group facilitator to learn more.
The following support groups are maintaining their monthly meetings via Zoom. Please contact us by phone or email to register.
This group is for people living with Parkinsons.
Meets monthly on the SECOND Tuesday
1:30 pm 3:00 pm
What Is Parkinsons Disease
Parkinsonâs disease is a progressive, neurological disease that mainly affects movement but can also affect cognition. Parkinsonâs disease results from the destruction of nerve cells in a part of the brain called the basal ganglia.
Different parts of the brain work together by sending signals to each other to coordinate all of our thoughts, movements, emotions, and senses. When we want to move, a signal is sent from the basal ganglia to the thalamus and then to the cerebral cortex, all different parts of the brain. Nerve cells in the brain communicate by using chemicals. A chemical called dopamine is produced in a group of cells called the substantia nigra and is essential for normal movement. When the cells die, they can no longer produce and send dopamine, so the signal to move doesnât get communicated. By the time a person starts to experience motor symptoms of Parkinsonâs, theyâve already lost approximately 50% of their dopamine producing cells. People may experience non-motor symptoms from loss of other neurotransmitters up to ten years before motor symptoms are noticed.
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How Support Groups Work
Many people ranging from caregivers to friends and family of people with Alzheimers disease find support groups to be a wonderful source of information, encouragement, and inspiration. In addition, those who have been recently diagnosed with dementia or are in the early stages of the disease find support groups helpful. With the advancement of technology there is more, easy access to support groups. They can be accessed in-person, virtually or on-line.
In-Person
Virtual
This is a hybrid model that mirrors in-person format. Done virtually, meetings are held on platforms like zoom. Meetings are held with moderators leading in a discussion that could be question based or lead from an email chain. While face-to-face support can be beneficial, this option is easily accessible only requiring internet. One can gain the same benefits of help and compassion but done easily without having to leave the house. This is an accessible tool that can easily offer support for someone who has less time, difficulty with transportation or wants a support group that they can attend from the comfort of their home.
Online
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Family Caregiver Respite Program
As a family caregiver, it is important that you attend to your own health needs and find ways to engage in activities to aid in stress reduction and self-care. In the face of advancing Parkinsons disease, many caregivers slowly take on increasing responsibilities and have few opportunities for meaningful breaks.
The Family Caregiver Respite Program was created to provide modest financial assistance for the care of Parkinsons patients who require assistance with Activities of Daily Living and cannot safely be left alone. This program reimburses costs for short term care for the Parkinsons patient, while the caregiver receives a break from their challenging role. In order to be eligible for this program you must:
- Be a primary caregiver who resides with a family member with Parkinsons
- Live in the PRO service area
- Provide a description of the financial situation that creates a barrier to obtaining additional care services
Upon completion of The Family Caregiver Respite Program application, approved caregivers will work with our social worker to create a respite plan and explore other resources to support their caregiver role. Funds must be used within 12 months.
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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.
Thanks For Signing Up
We are proud to have you as a part of our community. To ensure you receive the latest Parkinsons news, research updates and more, please check your email for a message from us. If you do not see our email, it may be in your spam folder. Just mark as not spam and you should receive our emails as expected.
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South And Southwest Suburbs
Grundy Area Parkinsons Support Group /Minooka Village HallCommunity Room 121 McEvilly Road, Minooka, ILParkinsons Disease Support Group, click here for brochure.Free to attendFor more information call Pete and Becky Meyer at: 8156858685
Presence Health/St. Joseph Medical CenterPresence Physical Rehab and Sports Injury Center,2132 Jefferson Street, Joliet, ILParkinsons Disease Support GroupFree to attendFor more information call Mary at: 8157417562
Riverside Assisted Living85 E. Burns Road, Bourbonnais, ILParkinsons Disease Support GroupFree to attendFor more information call Marian Wulffe at: 8156854103
South Suburban HospitalFor more information call: Robert Reiser at 8157178860
Parkinsons Disease Support Groups In Northern And Central California
Heres a list of pandemic -time Parkinsons disease support groups in Northern and Central California. During the Covid-19 pandemic, many support groups have gone virtual/online while others are on hiatus. A few are meeting face-to-face.
Are you a caregiver to someone with PD or atypical parkinsonism living in Northern or Central California? Check out our list of caregiver-only support groups.
Are the meeting days/times below not ideal for you? Or do you live outside of Northern and Central California? Check out our lists of online support groups and scheduled virtual nationwide support groups.
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Support Groups Just For Family Caregivers
Family and friends are always welcome to our support groups, but we also have some support groups that are just for you. Care Partner Groups are a special program to give needed support for caregivers in a safe and confidential group of peers. In these groups you can hear what has worked for others in your situation. You can also find people who really understand the mixed emotions you might wrestle with. They deal with some of the same things you do and it is great to have a good laugh together, or a good cry, when you need one.
What Are Parkinsons Caregivers Support Groups
Parkinsons caregivers support groups are meetings designed for the family members and loved ones of people with Parkinsons disease . If you live with or care for someone with advanced PD, you may find support groups a great source of comfort and a chance to connect with other caregivers. If someone you love has been newly diagnosed with Parkinson’s, support groups can help you and your loved one come to terms with their condition, seek out information and know what to expect.
Here are some of the benefits of Parkinson disease support groups for caregivers:
- Connection: As a caregiver, you may not have many opportunities to socialize. Attending a Parkinsons caregivers support group is a chance to connect with others who understand your situation.
- Advice: Support groups arent just for emotional support they can also be great for practical advice, especially from others who have been where you are.
- Education: The more you can learn about your loved ones condition, the more you can help them. A support group should provide you with plenty of information and actionable advice both in terms of caring for someone with Parkinsons disease and making sure your own needs are met.
- Knowing you are not alone: Being a caregiver can be isolating at times. Simply knowing you’re not alone can help relieve depression and equip you with coping skills.
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Navigating Your Loved Ones Move To A Long
Despite your best efforts to keep your loved one with Parkinsons disease at home as their disease progresses, a move to assisted living or a nursing home may be necessary when their symptoms become advanced.
The following steps can help you navigate the emotional and practical elements of your loved ones transition to a care center.
1. Understand that its normal to need extra support to cope with how you feel about the move. The time surrounding your loved ones move can be overwhelming, and most families experience a wide range of difficult emotions.
- It can help to say your feelings out loud or write them down, as getting them out can make these feelings lighter over time.
- Try responding to your feelings with compassion that you are doing the best you can and that you made the best decision available to you.
- If you are struggling, turn to people you trust, other care partners, or a counselor, and let them know youre having a hard time.
2. Know that this move will be a learning curve for you, your loved one and care center staff.
You are learning how things work at the care center and who handles what. Your loved one is learning new faces, adjusting to surroundings and routines. The care center staff is trying to understand the care needs of your loved one, while also caring for other residents.
How do you choose an assisted living or nursing home?
3. Build and nurture a relationship with the care center staff.
6. Be flexible with your visits.
Check Out Our Events Calendar For Details On Guest Speakers Or Special Events Happening In The Support Groups
Whether you are newly diagnosed with Parkinson’s or have been living with PD for years, it helps to talk to others who are going through the same thing. Not every group is right for every person. They may serve certain populations also so we urge you to visit more than one group if you aren’t feeling a comfortable match. Most of Orange County’s Parkinson’s Disease support groups are not currently meeting in person due to the Covid-19 pandemic. There are several groups that are meeting virtually. Please see our events page for current virtual meetings.
Before visiting any of the support groups below, it is advised that you verify the time and location with the contact. To find groups outside the Orange County area, check the Resource page on the Parkinson Movement Disorder Alliance site.
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Our Top Care Partner Resources
- Contact our Helpline. Talk to a Helpline specialist at 1-800-4PD-INFO or for up-to-date information about Parkinsons, referrals to care professionals, local resources and more.
- Connect with your local Parkinsons Foundation Chapter.Find your local Chapter for nearby programs, support groups, and events, such as Moving Day, A Walk for Parkinsons, and join us in raising PD awareness and funds.
- Attend free care partner courses. Our Care Partner Program: Building a Care Partnership offers a series of self-paced online courses that feature conversations with care partners, lessons from health professionals and more.
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 , 7 days a week, for referrals and information.
APDA is here to support you.
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Parkinson’s Disease Support Group
Parkinson’s Disease is a progressive nervous disorder which can cause a variety of symptoms including difficulty with movement and communication. This support group offers education, support, and resources to patients with Parkinson’s Disease, caregivers and other members of their support team.
Although caregivers/family members are welcome, we request a maximum of one per participant due to space limitations.
The Parkinsons Disease News Today Forums Are A Place To Connect With Other Patients Share Tips And Talk About The Latest Research Check Them Out Today
Dont focus on the what-ifs. Theyll defeat you most every time. Do focus on now. It may seem like a tremendous struggle at the moment, but things could be worse. Today may be one of the harder days, but when the clock strikes 12, its a new day. Something wonderful could be ahead, waiting to happen. Your patient may turn into a pumpkin! Dont lose hope.
If you dont have one already, get a sense of humor. Without one, youll often despair. Find something funny in every day. You need to laugh.
Get yourself into a support group locally or online. You may not think you need it, but you do. Especially as the road becomes bumpier. And it will get bumpier. Get some support in place now, as it will make things easier to deal with later.
You need your friends. Dont alienate them by thinking you can do this by yourself. Accept their invitations to help. Accept an hour off, washing the dishes, picking up some groceries, dropping the kids off at practice, or cooking your family a meal. Give yourself some slack and let your friends feel needed, because if they are offering to help before you have even asked, they may see your need better than you can.
Try to think ahead. Your loved ones mental faculties may not be so great anymore. A daily schedule may be useful, with a reminder for doctors appointments, visitors, special occasions, etc.
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Best For Variety: Parkinsons Foundation
Parkinsons Foundation
The Parkinsons Foundation was formed from the merging of two other foundationsthe National Parkinson Foundation and the Parkinsons Disease Foundationwith the mission being to improve the lives of and ultimately find a cure for people living with PD.
The Parkinsons Foundation has a vast network of free, in-person support groups located throughout the country. Most of them are for anyone living with PD, but some are geared toward a certain audience .
The Parkinsons Foundation also offers a free online support community called PD Conversations. Here, individuals can connect with others living with PD, as well as get their questions answered by PD experts. To focus their interactions, the online community is broken up into discussion groupsnewly diagnosed, symptoms of PD, Spanish-speaking patients, and much more.
The Parkinsons Foundation also offers health and wellness classes and free educational resources through its local networks. The organization also raises awareness and funds through various gatherings, such as its annual fundraising event called the Moving Day Walk.
Best Overall: American Parkinson Disease Association
American Parkinson Disease Association
Founded in 1961, the American Parkinson Disease Association is reportedly the largest grassroots network devoted to fighting Parkinsons disease. They have invested more than $185 million in raising awareness, supporting educational programs, and funding research, with the goal of putting an end to PD.
The professionalism, ease of use, and the number of support group services that the ADPA provides are what make this organization the best overall support group for Parkinsons Disease.
In 2017, the ADPA collaborated with a support site, called Smart Patients, to form a new online support forum. Within this free discussion forum, patients with PD, loved ones, and caregivers can socialize, learn more about PD, and share tips and coping strategies about living with the disease.
As an added bonus, registration is simple: All people need to provide is an email address. The website overall is clean, well-organized, and conversations are easy to sift through or start on your own.
Besides its friendly and warm online support community, the ADPA has over 1,400 free support groups nationwide. Each one is uniquesome are devoted to people diagnosed with PD at a young age while others focus on caregivers or family members of people with PD.
The ADPA also offers exercise classes, such as Tai Chi, non-contact boxing, yoga, and dance, as well as educational seminars and social meet and greet events.
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