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.
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 .
Support Groups Just For Family Caregivers
Family and friends are always welcome to our support groups, but we also have some support groups that are just for you. Care Partner Groups are a special program to give needed support for caregivers in a safe and confidential group of peers. In these groups you can hear what has worked for others in your situation. You can also find people who really understand the mixed emotions you might wrestle with. They deal with some of the same things you do and it is great to have a good laugh together, or a good cry, when you need one.
Case Management And Counseling
Our Social Work services can make a big difference for caregivers. Whether you need help finding the right home health agency, a listening ear on a hard day, or a family meeting to discuss how kids and parents can work together to provide care, call on us! Our experienced Social Work staff have the flexibility and expertise to help ease the many concerns that can come up on along the way. By offering these services for free, we eliminate barriers to all who need these important services.
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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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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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Stay Current On Parkinsons News In Canada
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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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Best For Information Sharing: Patientslikeme
PatientsLikeMe was founded in 2004 by the brothers of Stephen Heywood, who had amyotrophic lateral sclerosis until his death in 2006. But in 2011, this free online support community opened itself up to other health conditions, including Parkinsons disease.
The Parkinsons disease support forum is now an active and robust community of close to 30,000 members, and what makes this forum so appealing is its role in information sharing. Members can voluntarily report aspects of their disease , and this data is collected and shared in the form of basic, colorful charts. Members can also sift through the data using easy-to-use search and filter tools.
Besides sharing and learning from one another, individuals can socialize and foster connections or friendships. Profiles on the forum contain information like gender, age, hometown, and a picture . Members can also include a short bio about themselves and a list of interests.
Any information shared in the forum is not protected by HIPAA, because it is voluntarily provided. Also, other members can send private messagesbut just through the forum, and not by email.
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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Foster A Good Relationship
Lastly, maintaining your relationship and communication with the person with Parkinsonâs can be the most challenging and rewarding aspect of caregiving. As Parkinsonâs disease progresses, the roles change and the person with Parkinsonâs may go from being an independent head of the household to a very dependent person requiring a significant level of care. However, research shows that despite high levels of strain, caregivers with good quality relationships have reduced depression and better physical health. Remember, as a caregiver your service to your loved one is beyond measure in terms of love, depth of care, and concern.
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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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.
Drug Therapy And Research
If the disease progresses beyond minor symptoms, drug treatment may be indicated. Drug therapy for Parkinsonâs typically provides relief for 10â15 years or more. The most commonly prescribed medication is L-dopa , and this helps replenish some of the depleted dopamine in the brain. Sinemet, a combination of levodopa and carbidopa, is the drug most doctors use to treat Parkinsonâs disease. Recent clinical studies have suggested, in the younger person, the class of drugs called âdopamine agonistsâ should be used prior to levodopa-carpidopa except in patients with cognitive problems or hallucinations. In those older than 75, dopamine agonists should be used cautiously because of an added risk of hallucinations.
Other drugs are also used, and new drugs are continually being tested. It is common for multiple drugs to be prescribed because many of them work well together to control symptoms and reduce side effects. Contrary to past beliefs, starting Sinemet in newly diagnosed people does not lead to early symptoms of dyskinesia . Current knowledge is that the disease progression causes dyskinesias, not a âresistanceâ to the drug.
Quality of life studies show that early treatment with dopaminergic medications improves daily functioning, prevents falls, and improves a personâs sense of well-being.
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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.
Dailystrength Parkinsons Disease Support Group
- 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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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.
Parkinsons Disease Caregivers Support Group
This group is designed to provide caregivers and families information and support in caring for those with Parkinsons Disease.
Virtual Support Group Acknowledgement
I understand that my participation in the virtual group does not establish a care treatment relationship and that everyone attending the virtual group may be able to see and hear each participant.
I understand I have the right to withdraw my consent to participate in a community education virtual group setting and to exit the virtual group at any time.
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South And Southwest Suburbs
Grundy Area Parkinsons 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
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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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.
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 Parkinsons PSG.
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Best For Variety: 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.
Who Gets Parkinsons Disease
Parkinsonâs disease, documented in 1817 by physician James Parkinson, is the second most common neurodegenerative disease after Alzheimerâs disease. Estimates regarding the number of people in the United States with Parkinsonâs range from 500,000 to 1,500,000, with 50,000 to 60,000 new cases reported annually. No objective test for Parkinsonâs disease exists, so the misdiagnosis rate can be high, especially when a professional who doesnât regularly work with the disease makes the diagnosis.
What Is Parkinsons Disease
Parkinsonâs disease is a progressive, neurological disease that mainly affects movement but can also affect cognition. Parkinsonâs disease results from the destruction of nerve cells in a part of the brain called the basal ganglia.
Different parts of the brain work together by sending signals to each other to coordinate all of our thoughts, movements, emotions, and senses. When we want to move, a signal is sent from the basal ganglia to the thalamus and then to the cerebral cortex, all different parts of the brain. Nerve cells in the brain communicate by using chemicals. A chemical called dopamine is produced in a group of cells called the substantia nigra and is essential for normal movement. When the cells die, they can no longer produce and send dopamine, so the signal to move doesnât get communicated. By the time a person starts to experience motor symptoms of Parkinsonâs, theyâve already lost approximately 50% of their dopamine producing cells. People may experience non-motor symptoms from loss of other neurotransmitters up to ten years before motor symptoms are noticed.