Thursday, February 29, 2024

Parkinson’s Disease Advocacy Groups

What Is A Support Group

Parkinsons Disease Support Group Information

A support group is 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:

Tailored Care Through Exercise

Several mechanisms explain the motor- and non-motor- benefits PD patients derive from various types of exercise ,1), including but not limited to the prevention of secondary complications, such as falls . This notion might be even more salient within certain ethnicities, as data, for example, suggest that PD-carriers for pathogenic variants in LRRK2 or GBA portend greater risk for freezing of gait and a higher risk for falls . Customized plans, through PCAs, thus, should be designed , that are personalized to both disease severity and PD phenotype, including postural instability and cognitive dysfunction .

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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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.

Medicare Local Community Consultation

Parkinson

Collaboration with Progressive Neurological organisations working promoting both an online survey and community forums to identify what services would be helpful for people living with progressive neurological conditions in the region. Results will be shared when collated and subsequent proposals for a Progressive Neurological support clinician /nurse may occur.

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Best Facebook Support Group: Parkinsons Community

Parkinsons Community

Parkinsons Community operates a Facebook support group with over 18,000 members and hundreds of posts each month.

This free, active, and insightful group is private, meaning it requires permission to join, and posts are only visible to members. Its open to people living with PD and their family members.

While the company that runs this community is focused on finding study participants for various research studies, individuals can simply join the Facebook group for support and encouragement.

Besides the online support group, Parkinson’s community offers other resources as well. People can qualify to speak to a Parkinson’s disease advocate about their personal journey with PD . There, individuals can also see if they qualify for different PD-related clinical trials.

Waltham Ma / Adult Children Of Pwp Support Group/care Partner Groups

These groups currently meet via Zoom. There are currently three groups ongoing at various times and for various situations. please contact Anne Muskopf to learn more and to find a group that best fits your needs

Jewish Family & Childrens Services, 1430 Main Street, Waltham, MA 02451Meeting Time: Call for dates/times and to registerContact: Anne Muskopf, MS, OTR/LPhone: 781-693-5069

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Low Vision Support Group For Older Adults

THIS PROGRAM IS CURRENTLY ON HOLD

This group meets monthly and offers individuals the opportunity to discuss their insights and challenges of living with vision loss. Additionally, participants have accessed resources that could help them understand their vision impairments and develop skills to manage daily living tasks successfully.

Meets the first Tuesday of the month

10:15 – 11:45 a.m.

Levy Senior Center Library, 300 Dodge Avenue, in Evanston, Illinois

To learn more, please email or call 847.424.5684.

‘this Is Parkinsons: A Focus On Young Onset’

SWLA’s only Parkinson’s Disease support group

One of the EPDAs priorities is to encourage EU decision makers to listen and act on our recommendations for meaningful policy change for all people living with Parkinsons. A key part of this is to challenge and correct current misconceptions that Parkinsons is a condition that only affects older people.

As a result, the EPDA held a series of events in Brussels in October 2018 with the aim of advocating at EU level for greater recognition of young onset people with Parkinsons.

MEP Rory Palmer hosted an exhibition in the European Parliament displaying the photography of Anders M. Leines which presented a powerful portrayal of what it means to live with Parkinsons as a younger person. The exhibition, This is Parkinsons, was on display from Monday 8 October until Friday 12 October and attracted many visitors.

We also held a policy roundtable in the European Parliament where we heard from MEP Marian Harkin on the work being done at EU level to help those with neurological diseases find quality and paid work.

Read more about the events here and, for more information, please contact .

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Dopamine Agonist Class Action Update

Parkinsons Victoria has been collaborating with the Salvation Amy gambling counselling division for several years as a class actions proceeds related to people who were affected by gambling while taking Dopamine agonists, during the period where developing impulse control disorder which was an increasingly known side effect was inconsistently communicated to people on these medications.

Beverly Ma / North Shore

This group will meet via Zoom for the foreseeable future. Please contact the facilitator for further details.

Beverly Council on Aging, 90 Colon Street, Beverly, MA 01905Meeting Time: 2nd Monday of the month, 1-3 PMContact: Ray James, BS, RNPhone: 617-638-7745Email:

This group is supported by the American Parkinson Disease Association MA Chapter

Note: Some meetings may not be held on the 2nd Monday of the month, please contact the Beverly Council on Aging to confirm meeting dates.

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Our Key Priorities For Eu Policy

The EPDA actively engages with European Union decision makers, partners and stakeholders to promote dialogue on policy gaps that negatively affect people with Parkinsons and their families, and to collectively advocate for long-lasting change.

The EPDA strongly believes that the EU can make a real difference to the lives of people affected by Parkinsons by:

Alamo Area Parkinson’s Disease Support Group

The 7 Best Parkinson
  • AddressSunset Ridge Church of Christ95 Brees
  • Fees:Please contact provider for fee information.
  • Application Process:Call or visit website for additional information.
  • Eligibility Requirements:Please call service provider or visit website to learn more about eligibility requirements.
  • Payment/Insurance Accepted:Please contact provider for accepted forms of payment.
  • ADA Access:Please contact facility for accessibility information.

Tell us about the person you’re helping:

  • Please contact provider for languages spoken by staff.

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Educationinternet Groups And Health Literacy

Disease education is vital to treatment success . PD patients obtain knowledge about their condition from their neurologists , whose abilities to engage in comprehensive disease counseling may be limited by time and resource constraints from non-specialized consultants who patients may sparingly visit and from the Internet, often a source of misinformation . Regardless of modality, acquiring accurate and actionable information about the disease is crucial. This is especially pressing among patients with reduced health literacy who may experience higher rates of medical non-adherence as a result . Community-based studies found that patients feel that inadequate time with their health-care teams is devoted to education . While a multitude of Internet resources exist, past research has suggested that only 30% of those over 60years old use the Internet for health-related information. Moreover, much of the information that may be encountered online may be inaccurate, vague, or outdated .

A Parkinson Care Advocate To Promote Continuity Of Care

According to Freeman and colleagues notion of continuity of care , several elements converge to promote the highest quality of care, including relationships, management, information, societal context, and personal agency . Initial qualitative exploration that elicited desires from PD patients and caregivers demonstrated alignment with Freemans attributes. Patients articulated desires to receive assistance with diagnostic acceptance and prognostication to obtain accurate information surrounding the disease and to experience integrated care and periodic follow-up as modalities of treatment evolve . As in other neurodegenerative diseases, the therapeutic importance of fortifying a patients sense of agency in a phenomenological context that powerfully challenges the sense of self is immense .

The Parkinson Care Advocate will serve to integrate and coordinate multiple dimensions of Parkinsons disease care, in tune with themes from Freemans model.

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Engaging Eu Policymakers In Projects That Make A Difference

The EPDA frequently engages with EU policymakers to build political support for the projects it leads and participates in.

For example:

My PD Journey is a multi-stakeholder European coalition led by the EPDA which works towards improving the lives of people living with Parkinsons. Since 2014, the EPDA has actively engaged with political leaders to promote the value of multi-stakeholder projects such as this and build political backing for the coalitions activities, including the new Parkinsons Disease Composite Scale . This simple new rating scale, to be used primarily by neurologists and other healthcare professionals familiar with Parkinsons, measures the severity of symptoms experienced by people with Parkinsons in a timely way.

My PD Journey is currently working with neurological and clinical bodies, policymakers, and patient organisations to roll out this new tool across Europe, and beyond.

Below are some of the most recent major events we have organised in Brussels:

The PDCS was officially rolled out across Europe in May 2019. Should you wish to learn about My PD Journeys upcoming activities or get involved, please email .

Starting A New Peer Support Group

North Shore Senior Center’s Parkinson’s Disease Support Group

Parkinsons Victoria is happy to work with individuals who are interested in starting a new Peer Support Group for people living with Parkinsons.

While Parkinsons Victoria is unable to provide financial support or an ongoing facilitator, we are able to support a group through:

  • Regular updates and information from Parkinsons Victoria
  • Regular visits from a member of the Parkinson’s Victoria 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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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 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.

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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.

Braintree Ma / Deep Brain Stimulation

Parkinsons Disease Society (Burnley Support Group)

This group will meet via Zoom for the foreseeable future. Please contact the facilitator for further details.

Health South Braintree Rehabilitation Center, 2nd Floor AB Conference Room, 250 Pond Street, Braintree, MA 02184Meeting Time: 2nd Saturday of the Month 10-11:30 AMContact: Keith J. Ciccone, BS, LPNPhone: 617-733-8120

This group is supported by the American Parkinson Disease Association MA Chapter

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Rockland Ma / South Shore

During the pandemic, the Hingham, Marshfield, Rockland & Scituate groups will meet virtually in a combined group. Please contact Leslie Vickers for further details.

110 Fitness, 200B Weymouth Street, Conference Room, Rockland, MA 02370Meeting Time: Tuesdays 5:30 6:30 PMContact: Leslie Vickers, RN, MSPhone: 617-750-2275

This group is supported by the American Parkinson Disease Association MA Chapter

Agency For Clinical Innovation

Parkinsons Victoria participated in a review facilitated by the Australian College of Nursing of the clinical guidelines for Percutaneous Endoscopic Gastrostomy insertion. This is often a complex decision for people living with progressive neurological conditions and contribution ensures that these conditions and there ongoing needs are included in the document.

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Hospital For Special Care Online Support Group

When: Meets the 4th Wednesday each month at 3:00 PMWhere: The Residence at Brookside, 117 Simsbury Road, AvonContact: Krisztina Jarai, 860-470-8268

When: Meets the 2nd Friday of the month at 11:oo AMWhere: Atria Darien, 50 Ledge Road, DarienContact: Waiting for new facilitator.

East Hartford-Beat PD Today

When: Meets 1st Saturday of the month at 10:30 amWhere: 102 Pitkin Street, East Hartford, CT 06108

East Hartford Online support, please email facilitator.

Ellington-Moving Forward with Parkinsons

When: Meets the 2nd Friday each month at 11:00 AM.Where: The Ivy at Ellington, 123 West Road, EllingtonContact: Mary Palmer, 860-926-4080

Fairfield County-Online support-please call facilitator.

When: Meets the 3rd Tuesday each month at 7:00 PM.-Shakers Anonymous GroupWhat/Where:Young Onset & Young at Heart New Canaan YMCA: 564 South Ave

Farmington-Online support-please call facilitator & in-person.

When: Meets the 2nd Friday of the month at 10:30 AMWhere: Anthology of Farmington, 1 Bridgewater Road, FarmingtonContact: Holly Seymour, 860-507-7712

When: Meets the 2nd Tuesday of the Month at 11:00 AM.Where: The Hearth at Glastonbury, 281 Western Blvd., GlastonburyContact: Sue York, 860-430-9938

When: First Tuesday each month at 12:00 PM.Where: VNA Community Healthcare: 753 Boston Post Rd, GuilfordContact: Tracy Blanford,When: Second Thursday of the month at 10:30 amWhere: VNA Community Healthcare: 753 Boston Post Rd., GuilfordContact: Jenna Weinberg,

Mystic

Shelton

Vernon

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