Navigating Your Loved Ones Move To A Long
Despite your best efforts to keep your loved one with Parkinsons disease at home as their disease progresses, a move to assisted living or a nursing home may be necessary when their symptoms become advanced.
The following steps can help you navigate the emotional and practical elements of your loved ones transition to a care center.
1. Understand that its normal to need extra support to cope with how you feel about the move. The time surrounding your loved ones move can be overwhelming, and most families experience a wide range of difficult emotions.
- It can help to say your feelings out loud or write them down, as getting them out can make these feelings lighter over time.
- Try responding to your feelings with compassion that you are doing the best you can and that you made the best decision available to you.
- If you are struggling, turn to people you trust, other care partners, or a counselor, and let them know youre having a hard time.
2. Know that this move will be a learning curve for you, your loved one and care center staff.
You are learning how things work at the care center and who handles what. Your loved one is learning new faces, adjusting to surroundings and routines. The care center staff is trying to understand the care needs of your loved one, while also caring for other residents.
How do you choose an assisted living or nursing home?
3. Build and nurture a relationship with the care center staff.
6. Be flexible with your visits.
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.
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.
To contact Susan to add your group to the list:Susan DietrichCoordinator, American Parkinson Disease Association Information & Referral Center of VirginiaPhone: 434-982-4482 | Email:
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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.
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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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
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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Fredericton Nb Caregiver Support Group
- Address :
- 50 Boyne Court, Fredericton, NB
Start Time : 1:30 pm
Contact Email :
- Notes :
The Fredericton and Area Caregiver Support Group is offered on the fourth Wednesday of every month at 1:30 pm on Zoom. All Caregivers are welcome. This is a wonderful opportunity to connect with other caregivers to provide support, guidance and a feeling of understanding and connectivity.
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Orange County Parkinsons Disease Support Groups
Many Orange County support groups are transitioning back to in person meetings following the Covid 19 Pandemic. Be sure to check with a group to find out their latest details before attending.
Whether you are newly diagnosed with Parkinsons or have been living with PD for years, it helps to talk to others who are going through the same thing. Not every group is right for every person. They may serve certain populations also so we urge you to visit more than one group if you arent feeling a comfortable match. Most of Orange Countys Parkinsons Disease support groups are not currently meeting in person due to the Covid-19 pandemic. There are several groups that are meeting virtually. Please see our events page for current virtual meetings.
Before visiting any of the support groups below, it is advised that you verify the time and location with the contact. To find groups outside the Orange County area, check the Resource page on the Parkinson Movement Disorder Alliance site.
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Best For Variety: Parkinsons Foundation
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.
Best For Information Sharing: Patientslikeme
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.
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Caregiver Support Groups: Parkinsons 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 Parkinsons 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.
Alzheimers And Dementia Caregiver Center
Here you can find resources that are the closest in proximity to you, staffed by trained professionals that can offer you information or support. The Alzheimers and Dementia Caregiver Center also provides separate support groups for those in early or late stages of dementia and Alzheimers disease.
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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.
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.
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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, Parkinsons community offers other resources as well. People can qualify to speak to a Parkinsons disease advocate about their personal journey with PD . There, individuals can also see if they qualify for different PD-related clinical trials.
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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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.
What Is A Support Group
Support groups are tremendously effective in helping People with PD & their caregivers cope with the day-to-day realities of coping with Parkinsons disease.
Patients with Parkinsons are hungry for information. Greatest gift of a support groups is helping the patient or caregiver come to know he or she is not alone. You will discover and share ways of dealing with the challenges of PD, finding new resources, understanding and encouragement. Learn ways of relating to others or new ways you can help
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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.