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.
Parkinsons Peer Support Groups
A Parkinsons Peer Support Group is a gathering of people whose lives are affected by Parkinsons, who meet regularly in a relaxed, welcoming environment.
Activities generally undertaken by a Peer Support Group include:
- Sharing information and solutions to common situations
- Hearing from health care professionals about new developments in Parkinsons medication, treatment options and research
- Discussing experiences and feelings
- Taking part in community awareness raising activities
- Enjoying company and friendship with others in a similar situation
Each peer support group is unique in its membership and style. Most Parkinsons groups meet once a month, however some meet every couple of months, while others meet weekly. Some groups are associated with a local healthcare service, while others are run by dedicated members of the community who may or may not have Parkinsons.
People living with Parkinsons, their carers, friends and family are all welcome.
Watch this video featuring Mansfield Parkinson’s PSG.
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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Other Support Groups In Virginia
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
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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South And Southwest Suburbs
Grundy Area Parkinson’s 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
How Does Parkinsons Affect The Brain
When the disease occurs, some nerve cells might break down or die gradually.
Though due to this the dopamine level of your brain decreases, & if the dopamine decreases, the brain will start behaving in an abnormal way.
Albeit, people often get confused over the two terms Alzheimers & Parkinsons well both the disease are caused by damaged brain cells..but there are huge differences.
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Caregiver Support Groups: Parkinson’s Disease
The role of a caregiver is often a complex one. Caregivers may find support in speaking with others in a similar role. Support groups for caregivers who are caring for someone living with Parkinson’s disease are listed by county.
Before joining a support group for the first time, we recommend that you reach out to the facilitator or location to check if any details have changed, or to be notified if an emergency arises. Additionally, some facilitators like to learn about new members ahead of your first meeting to prepare a welcome packet or notify the group of a new member, and in general to learn more about your caregiving role and journey.
If you are unable to find what you are looking for, please contact UPMC Senior Services at 866-430-8742 or . We will do our best to check for a support group that will meet your needs and is located close-by.
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.
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How Is Parkinson Disease Diagnosed
Parkinson disease can be hard to diagnose. No single test can identify it. Parkinson can be easily mistaken for another health condition. A healthcare provider will usually take a medical history, including a family history to find out if anyone else in your family has Parkinsons disease. He or she will also do a neurological exam. Sometimes, an MRI or CT scan, or some other imaging scan of the brain can identify other problems or rule out other diseases.
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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:
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Diagnosis: Parkinson’s Dementia Or Dementia With Lewy Bodies
During assessment, a specialist may look at when the dementia symptoms first appeared before reaching a diagnosis of Parkinson’s dementia or dementia with Lewy bodies.
If there have been motor symptoms for at least one year before dementia symptoms occur, specialists will often give a diagnosis of Parkinson’s dementia.
If dementia symptoms occur before or at the same time as motor symptoms, specialists will usually give a diagnosis of dementia with Lewy bodies.
However, it should be noted that in some cases of dementia with Lewy bodies, no motor symptoms develop at all.
Theres no single test – diagnosis is made through several different assessments, usually starting with an appointment with your GP or Parkinson’s nurse.
Some people find it helps to go to the appointment with someone who knows them well, who can give the GP or Parkinson’s nurse information about changes they’ve noticed.
Your GP can discuss your symptoms with you and carry out a physical examination, including blood and urine tests, to rule out other potential causes of the symptoms .
Your GP may also review your medication, in case your symptoms are side effects.
If your GP thinks you have dementia, they can refer you to a specialist, such as a neurologist, psychiatrist or geriatrician.
You might be referred to a memory clinic or memory service. In some areas of the country, you can refer yourself to these services.
But if you feel you need to see the specialist again, you can ask to be referred back.
The Era Of Digital Cognitive Testing
The development of digital cognitive testing and the evolution of self-completed computerized assessments and wearable devices to assess cognitive functioning in daily life, provides an exciting opportunity to both improve clinical management and to obtain more sensitive outcome measures for clinical trials and will likely become a standard procedure in the future, given further technological improvements and increased access to the internet and digital devices. To reach this point, psychometric requirements , documentation and technical problems, as well as their relation to traditional tests, need to be well known.
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Stay Current On Parkinsons News In Canada
With your support, you inspire the kind of action that will make a profound difference in the well-being of Canadians living with Parkinsons. Together, we will continue the global quest for a cure and create a world without Parkinsons.
4211 Yonge Street, Suite 316, Toronto, ON M2P 2A9
Phone:
From coast to coast to coast, we acknowledge the ancestral and unceded territories of Inuit, Métis, and First Nations Peoples.
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
To discuss the possibility of setting up a new Peer Support Group in your area:
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Care Partner Support Group
This support group is for persons who are caring for someone who needs assistance. It may simply be the challenges of aging or chronic illness, such as Alzheimers or other forms of dementia, Cancer, Parkinsons disease, or even because of mental health issues. You are also welcome if your loved one is long distance or in a care community. Group leader: Marianne Panke, M.A., L.M.T. This group meets regularly during the month via Zoom.
Registration required. Please email Marianne Panke at for more information and to register.
Thanks For Signing Up
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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:
Apda Connecticut Chapter Support Groups
Please contact your facilitator for details.
Online Support: Please call facilitators for details.Farmington-Holly Seymour- 860-507-7715Farmington-UConn Health-Neurology Dept.-Kristen Vavrek, LCSW, CDP 860-679-3224
PLEASE CONTACT YOUR FACILITATOR TO SEE IFTHEIR SUPPORT GROUP IS BEING OFFEREDONLINE OR IN-PERSON.
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Mccormick Lewy Body/parkinsons Disease Dementia Caregiver Support Group
This group addresses the particular challenges of caring for someone with Lewy Body/Parkinsons Disease dementia, which differs in many ways from the treatment approaches used for the more common types of dementia, such as Alzheimer disease. Professional social workers guide these helpful and supportive discussions that are informed by medical and behavioural experts.
Meetings:
Third Wednesday of each month except July and August.Pre-registration is required to participate. Please register by calling a social worker at 519-439-9336 or e-mailing .
Early Stage Alzheimer’s Support Group
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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Our Eyes May Provide Early Warning Signs Of Alzheimers And Parkinsons
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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Parkinson’s Disease Support Groups In Northern And Central California
Here’s a list of pandemic -time Parkinson’s disease support groups in Northern and Central California. During the Covid-19 pandemic, many support groups have gone virtual/online while others are on hiatus. A few are meeting face-to-face.
Are you a caregiver to someone with PD or atypical parkinsonism living in Northern or Central California? Check out our list of caregiver-only support groups.
Are the meeting days/times below not ideal for you? Or do you live outside of Northern and Central California? Check out our lists of online support groups and scheduled virtual nationwide support groups.
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What Are The Types Of Lewy Body Dementia
There are two types of LBD: dementia with Lewy bodies and Parkinsons disease dementia.
Both types cause the same changes in the brain. And, over time, they can cause similar symptoms. The main difference is in when the cognitive and movement symptoms start.
Dementia with Lewy bodies causes problems with thinking ability that seem similar to Alzheimers disease. Later, it also causes other symptoms, such as movement symptoms, visual hallucinations, and certain sleep disorders. It also causes more trouble with mental activities than with memory.
Parkinsons disease dementia starts as a movement disorder. It first causes the symptoms of Parkinsons disease: slowed movement, muscle stiffness, tremor, and a shuffling walk. Later on, it causes dementia.
How Support Groups Work
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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