Tuesday, July 16, 2024
Tuesday, July 16, 2024
HomeFactsParkinson's Disease Caregiver Support Groups

Parkinson’s Disease Caregiver Support Groups

Family Caregiver Respite Program

Caregiver Tips for People with Parkinsons Disease

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.

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

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.

Recommended Reading: Does Parkinson’s Affect Cognitive Ability

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.

Best Way To Find A Local Support Group

Caring for a loved one with Parkinsons disease may be a part of your ...

You might also try looking for a support group thats close to home so its easy for you to get involved. Search the PMD Alliances online database of support groups divided by state. You could also ask your doctor for recommendations.

Although every support group for people with Parkinsons disease is designed to help you find the support you need to keep on living your life, every support group is also unique.

You May Like: What Can You Do To Help Parkinson’s Disease

Parkinsons Disease Caregivers Support Group

This group is designed to provide caregivers and families information and support in caring for those with Parkinsons Disease.

Virtual Support Group Acknowledgement

I understand that my participation in the virtual group does not establish a care treatment relationship and that everyone attending the virtual group may be able to see and hear each participant.

I understand I have the right to withdraw my consent to participate in a community education virtual group setting and to exit the virtual group at any time.

Telephone Support Group In Spanish

Designed for Spanish-speaking family caregivers to share their experience, advice and support for other caregivers. For more information or to register, please contact Adriana Sanchez, 434-3388 x316, asanchez@caregiver.org. Open to San Francisco Bay Area residents of Alameda, Contra Costa, Marin, San Francisco, San Mateo and Santa Clara Counties.

Also Check: Parkinson’s Support Group Denver

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.

Topics You Might Discuss

Parkinsons Disease Support Group Information

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

You May Like: What Does Parkinson’s Disease Do To Your Body

Where To Find A Parkinsons Support Group For Caregivers

Parkinson’s caregivers support groups are excellent sources of information, advice and emotional help. If you care for someone with Parkinson’s disease, you’ll know that the role of a Parkinson’s caregiver isn’t always easy. While being able to care for a spouse or family member and improve their quality of life can be rewarding, it can also be upsetting, frustrating and isolating, sometimes resulting in Parkinson’s caregiver burnout. Therefore, it’s vital that you surround yourself with the support you need. Here’s how and where to find Parkinson’s caregivers support groups.

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.

Read Also: Which Of These Metals Has Been Linked To Parkinson’s Disease

Check Out Our Events Calendar For Details On Guest Speakers Or Special Events Happening In The Support Groups

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.

Recommended Reading: What Is Bradykinesia In Parkinsons

Parkinson Association Of The Carolinas Virtual Support Group

There are support groups for those with Parkinson

On the first Wednesday of every month at 2:00 PM, we invite everyone from our community to join us for Virtual Support Groups for FREE via Zoom! Whether you are a person with Parkinsons disease, a family member or friend, a caregiver, community member, or industry leader, we want to help you to be proactive about your mental, physical, and emotional wellbeing.

You can also find documents, videos, blogs, tips, and much more toward the bottom of this page.

Read Also: Do Parkinson’s Tremors Come And Go

Resources For Care Partners

When one person in a couple or family is affected by Parkinsons disease, the other family members live with it as well. To keep your care partnering relationship healthy and balanced, its important that the care partner finds time to take a break from care partner duties, has some outside interests and has others they can turn to for support and resource information.

Be proactive find a Care Partner Support Group. Find time to build exercise and good nutrition into your life. Our Chapters and Information and Referral Centers offer an array of programs for partners.

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.

Don’t Miss: Dry Mouth And Parkinson’s

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.

Parkinsons Disease Support Group

My Parkinson’s Story: The Caregiver

Parkinsons 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 Parkinsons 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.

Read Also: What Are Early Warning Signs Of Parkinson’s Disease

Case Management And Counseling

Our Social Work services can make a big difference for caregivers. Whether you need help finding the right home health agency, a listening ear on a hard day, or a family meeting to discuss how kids and parents can work together to provide care, call on us! Our experienced Social Work staff have the flexibility and expertise to help ease the many concerns that can come up on along the way. By offering these services for free, we eliminate barriers to all who need these important services.

What 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:

Also Check: Do Parkinson’s Patients Have Hallucinations

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.

Ridgecrest Parkinsons Support Group To Meet Oct 13

Meetings

The Parkinsons disease support group invites everyone suffering from or providing care to anyone with Parkinsons to attend regular meetings.

Parkinsons is an incurable and debilitating neurological ailment affecting more than 10 million individuals worldwide.

Although each patient exhibits a unique set of symptoms, the most common are those that result in movement disorders and include tremors or shakes in the upper extremities, trouble with walking gait with an increase in the danger of falling, trouble maintaining speech volume, forgetting to swallow resulting in drooling of the mouth, loss of the sense of smell and loss of appetite.

The group meets the second Thursday of each month from 2:30 to 4 p.m. at Grace Lutheran Church to share experiences and new information in an informal and friendly setting.

Individuals seeking more information is encouraged to call Rosie Holtrop at 760-375-2076.

You May Like: Lsvt Exercises For Parkinsons

Read Also: How Does Sinemet Help Parkinson’s

Browse Our Pd Education Library Featuring Videos From Ohio State Pd Experts

We know you have many questions about a multitude of topics surrounding the PD diagnosis of you or someone you love. Topics include understanding the progression of PD, speech and communication tips, sexual health, adaptive eating, newest treatment options and some of the latest research studies happening at Ohio State.

RELATED ARTICLES

Popular Articles