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Dont focus on the what-ifs. Theyll defeat you most every time. Do focus on now. It may seem like a tremendous struggle at the moment, but things could be worse. Today may be one of the harder days, but when the clock strikes 12, its a new day. Something wonderful could be ahead, waiting to happen. Your patient may turn into a pumpkin! Dont lose hope.
If you dont have one already, get a sense of humor. Without one, youll often despair. Find something funny in every day. You need to laugh.
Get yourself into a support group locally or online. You may not think you need it, but you do. Especially as the road becomes bumpier. And it will get bumpier. Get some support in place now, as it will make things easier to deal with later.
You need your friends. Dont alienate them by thinking you can do this by yourself. Accept their invitations to help. Accept an hour off, washing the dishes, picking up some groceries, dropping the kids off at practice, or cooking your family a meal. Give yourself some slack and let your friends feel needed, because if they are offering to help before you have even asked, they may see your need better than you can.
Try to think ahead. Your loved ones mental faculties may not be so great anymore. A daily schedule may be useful, with a reminder for doctors appointments, visitors, special occasions, etc.
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
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.
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Groups For Care Partners
Care partners may also benefit from joining support groups. The Parkinsons Foundation notes that it is important for care partners to remember to care for themselves as well as their loved ones.
Care partner support groups can offer emotional support and practical advice for those caring for someone with Parkinsons disease. A person can ask a doctor about local support groups or search for them online.
Organizations and websites that offer support for care partners include:
- The APDA: The APDA provides resources and support for care partners as well as people with Parkinsons disease.
- The Parkinsons Foundation: This organization also provides information for caregivers.
- The Family Caregiver Alliance: This organization provides services for caregivers and the people who receive their care. FCA CareNav is an online resource for family caregivers.
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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
To discuss the possibility of setting up a new Peer Support Group in your area:
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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.
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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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.
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.
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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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Give Yourself Permission To Try Something New
As much as this time has challenged us to find a new direction, give yourself permission to try something new. It is easy to drop into a routine that does not allow for us to make time for ourselves. Take time to pay attention and evaluate your schedule to find opportunities to support yourself. A small investment in our personal care can make a huge impact on our mind, body, and spirit.
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Seeing & Meeting The Need Of The Parkinson’s Community
As a care partner who has started support groups in my area, both for those living with Parkinsons and those caring for people with Parkinsons, Ive always known that there were many, many more people at home who wanted to attend support groups and educational programs.
Before these strange and difficult times, I thought it was pretty obvious that many folks stayed home due to a variety of factors: lack of transportation options, inability to leave a loved one home alone, lack of mobility, anxiety about the physical challenges of leaving ones home, and so many more. I witnessed many people just fade out of attending in-person programs because of these challenges.
My heart would break to meet a fellow caregiver who wants and needs support but must stop attending meetings because their loved one cannot be left alone. I always wanted to do more for them, but I really did not know how to provide ongoing support for them.
Substantial Matters: Life And Science Of Parkinsons Podcast
Every other Tuesday, host Dan Keller, PhD, interviews Parkinsons experts to highlight the treatments and techniques that can help you live a better life now, as well as the research that can bring a better tomorrow. Episodes focus on a range of topics relevant to your daily life, including new levodopa delivery methods, exercise, clinical trials, nutrition and more!
Date: Every other Tuesday Location: Online, or any way that you listen to your podcasts
Learn more about the Substantial Matter podcast by clicking here.
PMD Alliance is a leader in live-stream programming offering a variety of live stream educational and community building programs to movement disorder community through the NeuroLife Online® programs. The platform and service model will helps ensure the community remains socially connected, continuing to learn, and be active.
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Support And Support Groups
Most people told us that when they were diagnosed they had little or no experience of Parkinsons disease and did not actually know anyone who had it. Although most people had been informed about the Parkinsons UK and many had contacted the society and obtained useful information, some of them held back from taking things further by joining a Parkinsons disease support group. Most explained their reluctance like Jean did: I dont want to see round the next corner what might be happening to me, Id rather I didnt know.
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.
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Other Places To Find Support
Support groups aren’t for everyone. If they don’t appeal to you, there’s no need to force it. If you were involved in community, religious or hobby-based organizations in your life before Parkinson’s, keep up those ties and friendships. In addition, educating yourself about Parkinson’s, and getting involved with local or national Parkinson’s organizations, can be ways to meet people who share some experiences with you without joining a support group.
Find Support in the Parkinsons Buddy Network
Create connections and find community online in the Parkinsons Buddy Network. Were building an online support system, one buddy at a time.
What Are Parkinsons Caregivers Support Groups
Parkinsons caregivers support groups are meetings designed for the family members and loved ones of people with Parkinsons disease . If you live with or care for someone with advanced PD, you may find support groups a great source of comfort and a chance to connect with other caregivers. If someone you love has been newly diagnosed with Parkinson’s, support groups can help you and your loved one come to terms with their condition, seek out information and know what to expect.
Here are some of the benefits of Parkinson disease support groups for caregivers:
- Connection: As a caregiver, you may not have many opportunities to socialize. Attending a Parkinsons caregivers support group is a chance to connect with others who understand your situation.
- Advice: Support groups arent just for emotional support they can also be great for practical advice, especially from others who have been where you are.
- Education: The more you can learn about your loved ones condition, the more you can help them. A support group should provide you with plenty of information and actionable advice both in terms of caring for someone with Parkinsons disease and making sure your own needs are met.
- Knowing you are not alone: Being a caregiver can be isolating at times. Simply knowing you’re not alone can help relieve depression and equip you with coping skills.
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Support Groups And Events
The Duke Movement Disorders Center is proud to participate in a variety of events to support and educate individuals with Parkinson’s and their care partners, including regular support groups, introductory programs to provide basic information on Parkinson’s, workshops for couples, and monthly singing and communications workshops. Click on the choices below to learn more about each of our upcoming programs.
For more information on any of our groups or programs, or to RSVP for a zoom link, please contact Lacy Rardin Sledge, LCSW, or Anne Kosem, LCSW .
Parkinson’s Support GroupsPatients diagnosed with Parkinson’s disease, as well as their care partners, are welcome to attend the Durham Parkinson’s Disease Support Group, held from 10:30 a.m. to noon on the fourth Tuesday of every month. This free support group, sponsored by the Parkinson Foundation, is open to all . Our Support Group is scheduled to meet on the following dates in 2022:
-Enhancing Resilience video by Bryan Sexton, PhD and Carrie Adair, PhD
Small Group Discussions
Ask the Doc with Dr. Nicole Calakos
Duke Movement Disorders Division Chief
Small Group Discussions
Mental Health and PD
No Meeting
Due to the ongoing pandemic, all support groups are now being held online. We hope that you can join us from your living room or other safe location. For more information, or to join, contact Allison Allen, LCSW, at 919-681-2656, or .
Our Parkinson’s Disease Support Groups are now being held virtually .
At This Time All Support Groups Are Only Available Remotely Via Zoom
PWP support groups provide opportunities for participants to share personal experiences and feelings, coping strategies, or firsthand information about medication, exercise, or other treatments. Each group is led by a facilitator with Parkinsons or a caregiver. If you are unsure if a support group is right for you, or if you have any questions about one or more of these groups, please call 250-360-6800, or email us at and we will connect you with the group facilitator to learn more.
The following support groups are maintaining their monthly meetings via Zoom. Please contact us by phone or email to register.
This group is for people living with Parkinsons.
Meets monthly on the SECOND Tuesday
1:30 pm 3:00 pm
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