Aware In Care Parkinsons Hospital Kit
The Aware in Care Parkinson’s hospital kit protects, prepares and empowers people with Parkinsons before, during and after a hospital visit. It contains tools and information to share with hospital staff during a planned or emergency hospital visit.
An Aware in Care Ambassador may be able to visit your group to present about preparing for a hospitalization. Contact us at for more information
Personalized Care For Parkinson’s Disease
Catholic Health’s dedicated team of movement disorder specialists offer comprehensive services for Parkinson’s disease from diagnosis to treatment. Their clinical excellence and compassionate care give you the best quality of life with innovative therapies and treatments as well as education and support to help you and your loved ones cope with a life-altering diagnosis.
Our Parkinsons Disease and Movement Disorders Center at St. Charles Hospital offers specialized care for adults diagnosed with Parkinson’s disease. We also offer support to patients at our Parkinsons Disease Information and Referral Center at St. Catherine of Siena Hospital .
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, Parkinson’s community offers other resources as well. People can qualify to speak to a Parkinson’s disease advocate about their personal journey with PD . There, individuals can also see if they qualify for different PD-related clinical trials.
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Parkinson Support Group Foundation Of Long Island Inc In Rockville Centre New York
| Parkinson Support Group Foundation Of Long Island Inc | |
| Employer Identification Number | |
| Parkinson Support Group Foundation Of Long Island Inc | |
| In Care of Name | |
| PO BOX 1073, Rockville Centre, NY 11571-1073 | |
| Activities | Aid to the handicapped , Scientific research |
| Subsection | |
| Contributions are deductible | |
| Foundation | Organization which receives a substantial part of its support from a governmental unit or the general public |
| Organization | |
| 990 – Required to file Form 990-N – Income less than $25,000 per year | |
| Asset Amount | |
| National Taxonomy of Exempt Entities | Diseases, Disorders, Medical Disciplines: |
| This organization: | |
| Other organizations performing similar types of work: | $194,124 |
| This organization: | |
| Other organizations performing similar types of work: | $279,867 |
| Write your review! |
| Program: |
| Transparency: |
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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Epilepsy And Seizure Support Group
For individuals with epilepsy and their families, this group is presented by South Shore Neurologic Associates, PC and LI Community Hospital. Topics include: safety with seizures, memory effects, relationships, stress, impact on job due to seizures, mood, emotional issues with seizures and other topics of interest to the group. For additional information, call Jennifer Zakarya at631.758.1910, ext.2111Meets: 1st Tuesday of each month beginning October 5th, 2021Time: 6:00pm 7:30pmPlace: 100 Hospital Road, 2nd Floor conference room 206, PatchogueFacilitated by: Jane Salzano, LCSW-R
Trained Experts In Parkinsons Disease Care
We understand the rough days when you shuffle more and cant stop the shaking. Our in-home care professionals know just when to nudge you through exercises, when to cook some meals ahead, or when to help you relax and talk through how youre really feeling about the limitations on your body. We notice the changes in posture and facial expression and help you make comfortable adjustments to maintain coordination and balance.
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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.
Support Groups For Patients And Caregivers
Stony Brook Medicine offers a wide range of support/educational/physical programs for our patients, family members, and staff. All programs are free but require registration. Cancer support groups include presentations by medical staff as well as a chance to interact with others facing a cancer diagnosis. Our educational and physical activities are designed with patients and their needs as the primary focus. Call 444-4000 for information about any of our programs or contact our Cancer Community Outreach Coordinator at 638-0004 for our cancer support groups.
ALS Support GroupMeets: 1st Tuesday of the monthTime: 6-8 pmPlace: 181 North Belle Mead Road, Suite 5, East SetauketCall: 444-4623
Education and support for caregivers of individuals with Alzheimer’s or a related dementiaMeets: Every ThursdayPlace: Christ Church United Methodist, Port Jefferson StationCall: 632-3160
Amputee Support GroupOpen to anyone who has undergone or is anticipating an amputation . Meet others with similiar experiences and discuss life’s daily challenges and situations.Meets: Monthly on the second Tuesday of each month **NOTE – November’s meeting will be held on Tuesday, November 15 Time: 6 pmPlace: Stony Brook University Hospital, Lobby Conference RoomCall: 444-7985
Open to all patients, family members and staff who have lost a loved oneArranged individually with chaplainCall: 444-4000
Support and education for patients with GYN cancer.Meets: Last Tuesday of the monthTime: 7 pmCall: 444-3442
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Best For Starting Out: Dailystrength Parkinsons Disease Support Group
DailyStrength
DailyStrength is a division of Sharecare, which was created by WebMD founder Jeff Arnold and the famous Dr. Oz in 2009. 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 inviting and 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.
Apda Long Island Information & Referral Centers:
The APDA Information & Referral Centers in Nassau & Suffolk Counties are designed to support and educate Long Islanders who are affected by Parkinsons disease. The goal is to help them to live life to the fullest throughout their Parkinsons journey. In addition to offering a wide variety of support groups throughout the region, the APDA I& R Centers host educational seminars and fundraising events, including an annual APDA Optimism Walk. These activities help to increase public awareness about the disease and raise much-needed funds that enable APDA to provide programs and services to the local PD community and also fund scientific research to find a cure.
Based on a commitment to patient education, support, and community involvement, NYIT College of Osteopathic Medicine and St. Catherine of Siena Medical Center became designated APDA I& R Centers. As regional hubs of the APDA network in Nassau and Suffolk Counties, the I& R Centers in each county offer the following services:
- Up-to-date information on medical and surgical treatments for Parkinsons disease
- Educational booklets on numerous aspects of Parkinsons disease and its management
- Physician referrals
- Referrals to support groups for patients and caregivers
- Referrals and information related to clinical trials
- Referrals and information related to community resources.
APDA Long Island Information & Referral Centers Contact Information:
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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 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 Parkinson’s disease.
The Parkinson’s 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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Parents/grandparents Who Have Lost A Child
Long Island Community Hospitals Hospice program offers a bereavement support group for parents and grandparents who have lost a child. The 8-week support group is open to all in the community, free of charge and is facilitated by a licensed Certified Social Worker.Every Thursday Evening 4:00pm 5:30pm
Registration Required For All GroupsFor further information and to register call 631-687-2960.
Special Programs And Services
Extended Day Aphasia CenterAdditional Adult ServicesPediatric Services
- Individual evaluations: Evaluations are available for children of all ages to assess speech and language skills.
- Individual Services: Individual sessions target the childs specific goals and the clinicians work with the childs caregivers to help facilitate carryover of skills learned in therapy in order to optimize his/her success. Caregivers have the option to opt for a 30, 45 or 60-minutes session.
- Chat Pack: Chat Pack is a thematic, language based play group for children 16 months to 5 years of age which encourages children to understand and use words while making exciting discoveries in a nurturing environment.
- Pragmatic Language AfterNoon Support : PLANS is a unique social group designed for school-age children which focuses on improving social language skills and language-based social thinking in a fun supportive small group setting.
- Phonemic Awareness and Literacy Support : PALS is a program that targets phonemic awareness skills, such as rhyming, sound blending, segmenting, manipulation and language comrehension for children in grades K-2.
Join the LIU Community!
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Why Do We Have Support Groups
We believe that support groups provide the best forum for the individual Parkinsonian and their caregiver to quickly gather information and to grow in the knowledge and understanding of their disease. In support groups you find wonderful people with compassion, courage, humor, and a desire to help each other.
You may have heard that support groups can be a depressing experience. Our response to that is that we try to be a positive influence to all of the individuals that attend our meetings and even to those that we interact with outside the meeting. There are people who do not like groups for whatever reason and that is their privilege. Also, people who come to a group and start comparing themselves to others are bound to have a poor experience. You can always find someone who is less affected or more affected by their disability. Rather than dwell on these differences, we encourage each person to share their triumphs and to learn how to handle their challenges.
To recognize and come to terms with your condition allows you to accept what has happened to you and you can take care of yourself, exercising, taking part in the daily activities you have always enjoyed, learning as much as you can about PD, consulting a movement disorder specialist and participating with him or her in managing your disease. In other words, take charge of your life as much as possible.
Its Not Magic Its Commitment
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Parkinson’s Disease Care For Westbury Ny
A diagnosis of Parkinsons disease brings a mix of disbelief, confusion and fear. No one really knows what causes the neurodegenerative brain disorder and its effect on muscle movement and control. No one has discovered a cure yet, but groups like the National Parkinson Foundation are helping advance breakthrough medications and treatments.
Wed all love to live without Parkinsons disease, yet if you are one of the 1 million Americans with this chronic condition, we at Right at Home understand how daunting living well with Parkinsons disease can be for both you and family caregivers. That is why we have skilled and compassionate home caregivers who help relieve the pain and stress of managing the unpredictable and common symptoms of Parkinsons disease.
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More Events At This Venue
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Friendship CircleThe Marion and Aaron Gural JCC,Cedarhurst , NY
Canasta, Bridge and Mah JonggThe Marion and Aaron Gural JCC,Cedarhurst , NY
Yoga for WomenThe Marion and Aaron Gural JCC,Cedarhurst , NY
Caregiver’s Support GroupThe Marion and Aaron Gural JCC,Cedarhurst , NY
Get the scoop on events, nightlife, day trips, family fun and things to do on Long Island.
Webinars And Video Content
Expert Briefings webinars offer first-hand access to Parkinson’s research and care leaders. Each free, hour-long online seminar provides practical tips for managing PD from experts.
PD Health at Home is a virtual community that hosts weekly events for the PD community covering mindfulness, fitness and topics important to the PD community.
All of our videos are available in our PD Library and searchable by topic.
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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.