Monday, April 8, 2024
Monday, April 8, 2024
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Parkinson’s Dementia Support Group

Other Support Groups In Virginia

Parkinson’s Disease support group

There are many more support groups in Virginia. Our thanks to Susan Dietrich from APDA at UVA in Charlottesville for providing us with this comprehensive list.Click here for the list of Parkinsons Support Groups Around Virginia

Contact info for Susan:Coordinator, American Parkinson Disease Association Information & Referral Center of VirginiaVoice mail: 434-982-4482 | Email:

Southeast/Richmond Parkinsons Disease Research, Education and Clinical Centers US Department of Veterans Affairs Please contact us at 675-5931 if you have any questions.Miriam Hirsch & Debbie Dellinger

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.

Lewy Body Dementia Association

Key Specs

  • Membership fee: Most groups are free, some may collect voluntary donations
  • Structure:Online, phone, video conferencing
  • Details: Offers support groups specifically for spouses and has active Facebook support groups.
  • Things to consider: Support groups are not available in all states

Lewy Body Dementia is a condition involving abnormal protein deposits in the brain called Lewy bodies. These deposits affect brain chemical levels, which may result in abnormal thinking, movement, and behavior, as well as mood disorders.

Lewy Body Dementia Association offers several types of virtual groups, internet discussion forums, and more. Its offers virtual, meetings for anyone living with LBDeven those who are not yet diagnosed but are seeking information.

If you’re seeking a combined support group for people diagnosed with Lewy body dementia and their care partners, Living Together with Lewy is another Facebook group that is available. This one aims to help those who are newly diagnosed, people with early symptoms of the condition, and others who are seeking advice around a possible diagnosis.

LBDA also offers an online support group if you have a spouse with Parkinsons disease dementia or Lewy body dementia : LBD Caring Spouses.

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The Alzheimer & Parkinson Association Of Irc Offers A Variety Of Support Groups To Help Those In The Community Who Are Affected From A Memory Or Movement Disorder

Whether you are the patient or the caregiver, the diagnosis of a memory or movement disorder can be a lonely and daunting experience. You might find yourself turning to others who are faced with similar issues and understand the challenges that you face.

The Alzheimer and Parkinson Association of IRC offers an array of support groups for those individuals and caregivers who are affected from a memory or movement disorder. At these support groups, you will find a group of people who offer a listening ear, supportive shoulder to cry on and a multitude of advice as you go through your journey.

Learn more about the support groups offered for movement disorders or memory disorders.

Our Eyes May Provide Early Warning Signs Of Alzheimers And Parkinsons

Parkinson

Forget the soul it turns out the eyes may be the best window to the brain. Changes to the retina may foreshadow Alzheimers and Parkinsons diseases, and researchers say a picture of your eye could assess your future risk of neurodegenerative disease.

Pinched off from the brain during embryonic development, the retina contains layers of neurons that seem to experience neurodegenerative disease along with their cousins inside the skull. The key difference is that these retinal neurons, right against the jellylike vitreous of the eyeball, live and die where scientists can see them.

Early detection is sort of the holy grail, said Ron Petersen, director of Mayo Clinics Alzheimers Disease Research Center and the Mayo Clinic Study of Aging. By the time a patient complains of memory problems or tremors, the machinery of neurodegenerative disease has been at work probably for years or decades.

Experts liken it to a cancer that only manifests symptoms at Stage 3 or 4. When patients begin to feel neurodegenerative diseases impact on their daily life, its almost too late for treatment.

Catching the warning signs of neurodegenerative disease earlier could give patients more time to plan for the future whether thats making caregiving arrangements, spending more time with family or writing the Great American novel.

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Northern California Dementia Caregiver

Caregivers of those with dementia need to have their own support group meetings or gatherings because they need to vent, share, learn tips and resources, and receive support from others walking the same path. There are many caregiver-only support groups in Northern California for those dealing with dementia. Most of the attendees are coping with Alzheimer’s Disease but you may find some groups where the attendees are coping with dementia in the context of Parkinson’s disease.

With the pandemic, many support groups have moved to meet virtually while others have gone on hiatus until in-person meetings can occur once again. Some groups have expanded the number of virtual meetings to provide more support. Most virtual meetings are using video. Of course youll need to contact the group leader for information on joining the meeting. Most likely, groups will restrict attendees to the local area.

Parkinsons Movement Disorder And Alliance

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.

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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.

Connections Among Those With A Diagnosis

Parkinsons Disease Support Group Information

Do you have a diagnosis of LBD, PSP, MSA, CBD, or atypical parkinsonism, and live in Northern/Central California? Are you interested in connecting with others, perhaps face to face, who live nearby? We invite you to and well send it to the relevant disorder-specific email list in Northern/Central California. We have helped many make important connections with others.

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Starting A New Peer Support Group

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

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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

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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.

Here Are Some Additional Resources That Can Help You In Your Care Partnering Role:

Parkinson
  • 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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Huntingtons Disease Support Group And Contacts

Rev. Jim Bridges4131 11th AVE NE, Penthouse #1Seattle, 981052nd Monday of each month, 6:30 8:00pm

EverettEverett Clinic Conference Center, Pilchuck Room3830 Hoyt Avenue in Everett4th Tuesday of each month at 6:30pm

Mt. Vernon/Bellingham2nd Tuesday of each month at 6:30PM

Olympia1st Monday of each month from 5:30-7:00PM

RentonRoom MAC C, Northwest corner of campusIst Saturday of each month from 10am to noon

Were Partnering With Enterin To Develop A Potential New Treatment For Parkinsons Dementia

Were investing £2m in Enterins phase 2 clinical trial of its drug ENT-01, a potential treatment for Parkinsons dementia.

In January 2022, Enterin, a biotech company based in the United States, announced promising results from a trial in 150 people with Parkinsons.

In this study, some of the trial participants had Parkinsons associated dementia and showed improvement in cognitive function during the 10-week treatment period.

They continued to see improvements in the 6 weeks following the treatment, showing that this treatment may have a significant impact on the progression of the condition.

Participants also saw an improvement in a range of non-motor symptoms , including bowel function, dementia, psychosis and sleep problems.

Enterins new phase 2b trial, in collaboration with the Parkinsons Virtual Biotech, will try to replicate the improvements in cognition seen in previous trials.

Arthur Roach, Director of Research at Parkinsons UK, said:

“Through the Parkinsons Virtual Biotech, were very excited to be working with Enterin as they look to develop a potential new treatment for Parkinsons dementia.

“Parkinsons is the fastest growing neurological condition in the world and currently there is no cure. We can only treat and manage the symptoms of which there are more than 40.

David McCullough, CEO of Enterin, said:

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Create A Calming Routine

When the sun goes down, sundowning starts to elevate. I suggest that caregivers cover the windows and put the house lights on. This begins the wind-down of daily activities.

Play soft music in the background to create a calming influence. Loud noises should be eliminated. Discourage visitors at this time and avoid watching aggressive television shows or the news. In other words, establishing calming daily routines will reduce agitation.

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How Support Groups Work

Treatment and Research: Dementia with Lewy Bodies (DLB)

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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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.

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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Support Groups For Parkinsons With Or Without Dementia

Parkinsons disease is tough to live with, both for the person affected and their family. Support groups are filled with people who are going through very similar experiences. Theyre a great place to safely vent frustrations, get new ideas for how to cope or solve problems, and learn about helpful resources.

Check with these organizations to find a support group in your area:

Early Stage Alzheimer’s Support Group

Parkinson

This support group is for persons with Early Stage Memory Loss & Care Partners. Our typical meeting has 8 to 12 men and women who bring their loved one with mild cognitive impairment or memory loss to the meeting. The participants support each other with stories and advice, and is a friendly and welcoming atmosphere. A typical meeting has each participant sharing their story and issues, receiving supportive thoughts from other members.

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American Parkinsons Disease Association

Key Specs

  • Membership fee: Free
  • Structure: In-person and online support groups, fitness classes
  • Details: Offers a network of local chapters and virtual events, resources created specifically for veterans and first responders, and fitness and dance classes on YouTube and via Zoom.
  • Things to consider: There are minimal fees for some classes.

The American Parkinsons Disease Association provides a variety of support groups and resources for Parkinsons disease patients and their family members and caregivers, everything from a support forum called Smart Patients to an Ask the Doctor section aimed at answering any question or concern you may have.

The APDA offers a nationwide search page to find local, in-person support group meetings for Parkinsons patients and their caregivers. Fitness classes for people with Parkinsons are available nationwide and, although there’s a fee involved, the APDA can help those who need financial assistance.

There are also resources for those with early-onset Parkinsons, veterans with Parkinsons, Spanish speakers, and more.

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