Friday, March 29, 2024

Parkinson’s Disease Support Groups

Parkinsons Movement Disorder And Alliance

Parkinson’s Disease Support Group

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.

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:

Sharon Had Gone To A Support Group But Decided That Though She Was Normally Quite Sociable This

…and probably most importantly I have access to the occupational health counsellor, and when I started I thought that, a couple of sessions, on we be, wed be through. And what I have found is that the counselling sessions have been really, really helpful, I found them very, very difficult because we have talked a lot about my loss. So he has identified that I have had to deal with a lot of loss and therefore its made me dealing with, diagnosis and adjustment more difficult because I havent actually dealt with anything else so we, we do, you know, have to discuss things I dont want to talk about which is relationship with my, husband, relationship with my, family, how I felt about my sister dying, how I feel about, the people I work with, and it, it can be quite harrowing but, but it, but its been very useful because its meant that Ive been able to say what Ive thought I needed to say which perhaps I cant say to other people, and thats been very therapeutic.

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Elisabet Was Shocked To See People Who Had Become Dependent On Someone Else And Preferred To

When I was first diagnosed, I, I knew nothing, I, I had seen one person with Parkinsons and that was a long time ago when I was a child. So I knew nothing about the disease. I read a little bit and I became a member of the local Parkinsons Association. And I went to a couple of their meetings and what I saw there made me very depressed because people, I had mainly tremor and the people I saw there had, you know this, dyskinesia. I had a little bit of that but there were people with large involuntary movements and with rigidity, stiffness, they froze. And I have mainly the tremor which was in a way bad enough but also very lucky because my movements, my moving about was in no way hampered. So I stopped going to the meetings of the association although Im an organising person, I, I felt that was too much. That was too depressing to see how that many people were, and also there were men with very helpful spouses and I thought Oh my God to become so dependent on someone else. Thats heavy. So my feelings of acceptance was simply maybe the denial in another form.

Keith Admits That Part Of His Interest In Other People With Pd Is To Make Comparisons With His

Parkinson

Well I suppose Ive got used to having it and think, well it hasnt progressed as rapidly as I feared over the last three years. So if theres somebody in the Parkinsons Disease Society branch support group thats had it for twenty years and I can look at her and think, oh well if thats what shes like after twenty years. And other people have had it for a long time dont seem to be quite as bad as you imagined. So in some way youre trying to measure your own progression and the progression over the last three years is not quite as bad as Id feared. So in many ways Im a bit more optimistic than I was.

Okay but seeing other people helps in some ways?

In some ways, yes. Its got pros and cons really. You can see what theyre like but you feel well you want to ask them how long theyve been like that and you really want to be, asking them all the questions about how long theyve had it and what patterns take developed since they were first diagnosed to see if theres any parallel. But as I said before the symptoms are so individualistic that you really cant draw too many conclusions from other peoples experience unlike lots of other diseases.

Because that would be a concern for people wouldnt it?

You couldnt keep me away now. I find them a great help, because youre talking to fellow sufferers, you are comparing notes, you are enjoying yourself because youre amongst people that can sympathise. We get some very good speakers.

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Find The Allies And Information That Can Make A Difference

  • Parkinsons Disease Education Library
  • Its easier to manage Parkinsons disease if you have the resources and people you need for support. Fortunately, theres an active community of health care experts, scientists, PD patients, caregivers and families who are ready to share research, treatment information, personal experiences, advice and so much more.

    We encourage you to learn about the different education and Parkinsons support groups and try one. The potential for a better quality of life and healthier outlook awaits.

    Connect With A Social Worker At The Ohio State Wexner Medical Center

    Our licensed, degreed social worker, Sarah Grim, LSW, focus on the impact PD has on all areas of a patients or caregivers life. As examples, this includes assistance and connections for your:

    Social Needs

    • Home Energy Assistance Program or other help with utilities
    • Meal assistance
    • Referrals for mental health counseling and other services
    • Caregiver resources at the medical center and in the community

    Medical Needs

    • Referrals for physical, occupational or speech therapy
    • Connections to PD foundations or associations

    If youd like to meet with an Ohio State social worker with PD experience, all you have to do is ask at your next medical appointment, call the Center for Parkinsons Disease and Related Movement Disorders at 614-293-4969 or contact a member of your care team through MyChart.

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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.

    What To Expect From A Support Group

    Parkinsons Disease Support Group Information

    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.

    One thing all support groups have in common in this: They want to help people affected by Parkinsons disease.

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    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

    Join A Pd Support Group Near You Or Access An Advocate Organization

    Whether youre a PD patient, caregiver or family member, you may find tremendous comfort knowing that there are others dealing with similar struggles, and learning new information may ease your journey. Sharing your own ideas and experiences may help someone else as well.

    Please note that meeting times may change. We recommend contacting the groups below directly to confirm details.

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    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.

    Starting A New Peer Support Group

    Parkinson

    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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    Penny Diagnosed When She Was 51 Did Not Feel Ready To See How Parkinson’s Disease Could Affect

    I have to admit that Im also concerned whilst Im happy to go onto the web forum and communicate with people whove, with, who have had Parkinsons for twenty years. Im anxious about meeting people in the flesh, I dont want to, I dont want to see my future. My mother had a friend who had Parkinsons so Im sort of familiar with what Parkinsons in old age is like but Im not brave enough to confront what some peoples level of Parkinsons is in people my own age. And I suppose that thats part of me not trying to worry about the future.

    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.

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    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.

    Support Groups And Events

    Bemidji Support Group Helps People With Parkinson’s Disease

    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.

    For more information on any of our groups or programs, or to RSVP for a zoom link, please contact Lacy Rardin Sledge, LCSW, or Anne Kosem, LCSW .

    Parkinson’s Support GroupsPatients 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 . Our Support Group is scheduled to meet on the following dates in 2022:

    -Enhancing Resilience video by Bryan Sexton, PhD and Carrie Adair, PhD

    Small Group Discussions

    Ask the Doc with Dr. Nicole Calakos

    Duke Movement Disorders Division Chief

    Small Group Discussions

    Mental Health and PD

    No Meeting

    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 .

    Our Parkinson’s Disease Support Groups are now being held virtually .

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    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

    Ridgecrest Parkinson’s Support Group To Meet Oct 13

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

    Parkinson’s 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.

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    Parkinson Association Of The Carolinas Virtual Support Group

    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.

    Dailystrength Parkinsons Disease Support Group

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

    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.

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