Thursday, September 22, 2022

Parkinson’s Disease Online Support Group

Topics You Might Discuss

Parkinson’s Support Group

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

Best Way To Find A Local Support Group

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.

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: Will There Ever Be A Cure For Parkinson’s

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?

Groups For Care Partners

Parkinson

Care partners may also benefit from joining support groups. The Parkinsons Foundation notes that it is important for care partners to remember to care for themselves as well as their loved ones.

Care partner support groups can offer emotional support and practical advice for those caring for someone with Parkinsons disease. A person can ask a doctor about local support groups or search for them online.

Organizations and websites that offer support for care partners include:

  • The APDA: The APDA provides resources and support for care partners as well as people with Parkinsons disease.
  • The Parkinsons Foundation: This organization also provides information for caregivers.
  • The Family Caregiver Alliance: This organization provides services for caregivers and the people who receive their care. FCA CareNav is an online resource for family caregivers.

Recommended Reading: Physiotherapy Management For Parkinson’s Disease Ppt

Support And Support Groups

Most people told us that when they were diagnosed they had little or no experience of Parkinsons disease and did not actually know anyone who had it. Although most people had been informed about the Parkinsons UK and many had contacted the society and obtained useful information, some of them held back from taking things further by joining a Parkinsons disease support group. Most explained their reluctance like Jean did: I dont want to see round the next corner what might be happening to me, Id rather I didnt know.

Best For Support Group Leaders: Parkinsons Movement Disorder And Alliance

Parkinsons Movement Disorder and Alliance

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 also offers 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.

However, what is truly unique about this organization is that it offers 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.

Read Also: Early Parkinson’s Symptoms Mayo Clinic

Explore Our Online Resources

In the face of mobility challenges, it continues to remain crucial for our PD community to find opportunities for physical, social and emotional engagement. If the COVID-19 pandemic taught us anything, its that there are so many ways to connect and engage with others, even if you cant leave your house. The many virtual programs and groups that APDA has created will continue to serve the PD community well, long after the pandemic is over. These online connections can work well:

  • for anyone who has mobility issues and finds it hard to get to in-person events
  • for those who may live far away from any PD-specific classes
  • for when youre out of town but dont want to skip your exercise class
  • as a great compliment to the in-person classes you attend

What Are Parkinsons Caregivers Support Groups

SWLA’s only Parkinson’s Disease support group

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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How To Open Up In A Group Setting

If youre new to talking in a support group, you may feel a little uncertain. Thats totally normal, as any experienced support group member can tell you.

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.

Then when you get to your first meeting, consider these strategies to help you get integrated and begin sharing:

Best For Starting Out: Dailystrength Parkinsons Disease Support Group

DailyStrength

DailyStrength is a division of Sharecare, which was created by WebMD founder Jeff Arnold and the famous Dr. Oz in 2009. 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 inviting and 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.

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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.

Substantial Matters: Life And Science Of Parkinsons Podcast

Caring for a loved one with Parkinsonâs disease may be a ...

Every other Tuesday, host Dan Keller, PhD, interviews Parkinsons experts to highlight the treatments and techniques that can help you live a better life now, as well as the research that can bring a better tomorrow. Episodes focus on a range of topics relevant to your daily life, including new levodopa delivery methods, exercise, clinical trials, nutrition and more!

Date: Every other Tuesday Location: Online, or any way that you listen to your podcasts

Learn more about the Substantial Matter podcast by clicking here.

PMD Alliance is a leader in live-stream programming offering a variety of live stream educational and community building programs to movement disorder community through the NeuroLife Online® programs. The platform and service model will helps ensure the community remains socially connected, continuing to learn, and be active.

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Evansville Parkinsons Awareness Support Association Of The Tri

First Tuesday of the month, 5:30 p.m. central time This group is an open forum for patients with movement disorders, where they can discuss, share and offer support to one another. Meetings frequently include guest speakers, such as medical and health care professionals and researchers discussing progress in medication and therapies.

Volunteer In Your Community

Support groups at PRO are coordinated by a volunteer facilitator, or group of co-facilitators, who usually have personal experience and knowledge of Parkinsons 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 Jess to discuss ways to get one started! 800-426-6806

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How To Find The Right Support Group

There are plenty of places to find Parkinsons caregivers support, both online and offline. You can easily find local meetings by searching for Parkinsons caregiver support group near me on your phone or computer with your Location Services turned on. If you would prefer to talk to someone about your options, you can call the National Parkinsons Foundation helpline on 1-800-4PD-INFO . If youre looking for your local meeting, you can use the APDA Support Group Finder on the American Parkinsons Disease Association website.

The Caregiver Action Network also has a great Care Community for Parkinson’s disease caregiver support where you can join forums or start your own posting threads. Again, you may find some online forums and chat rooms more uplifting than others, so take your time to explore all of the options.

If youve tried Parkinsons caregivers support groups before and havent found them helpful, its worth talking to your doctor about talking therapy or one-on-one counseling. Plenty of people experience stress or depression when they care for someone with Parkinsons disease, so its not uncommon. However, its important to look after yourself and find the right Parkinsons disease caregiver support for your situation.

Apda In Your Community

Parkinsons Disease Support Group Information

The American Parkinson Disease Association nationwide network provides information and referral, education and support programs, health and wellness activities, and events to facilitate a better quality of life for the Parkinson’s community. It is this grassroots structure that distinguishes APDA from other organizations serving people with Parkinson’s disease.

Read Also: What Is The Average Age For Parkinson’s Onset

Other Places To Find Support

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.

Find Support in the Parkinsons Buddy Network

Create connections and find community online in the Parkinsons Buddy Network. Were building an online support system, one buddy at a time.

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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Nicolas Made Some Contacts Through The Pds And Feels That You Can Learn More From Other People

From the PDS website, I managed to get in touch with a PDS branch and the nurse practitioner, which was very useful. So by making a few phone calls, I got some confidence with a few people in a similar position. I went along to the branch meeting. Met one or two other younger people in a similar situation and from there we formed a good social grouping and a contact group, which is very helpful in exchanging information on medication and other features and factors of the disease. And you find that there are many more people than you imagine who have got Parkinsons disease. So recommend the support of the local branch.

Parkinsons disease affects a lot of people in a lot of different ways, and its interesting to find out what range of knowledge there is. For example, I wasnt initially put on medication and lots of people were talking about medication and I thought, I didnt quite understand what was going on. Now Im on medication, I take more interest in that sort of thing. But a lot of that is the experiences of the people around the patch. Nurse practitioners quite helpful, but I found the best source of information are other people with Parkinsons disease.

bit of a hermit

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