Patient & Family Support Services And Resources
As a Parkinson’s Foundation Center of Excellence, we excel at helping PD patients and their family members navigate community resources that may assist in improving their quality of life. We provide a free, quarterly “Living Well with Parkinson’s” newsletter to keep patients up to date with our latest research and clinical developments, and to make them aware of helpful community events and resources.
Our patient advocacy partner, the Parkinson’s Foundation, also provides our center with a wide array of educational materials for distribution to our patients. A variety of regularly scheduled support groups , lectures, and events are also available for patients and their care partners. These events can be found on the Movement Disorders Calendar .
Day : Learn About The Journey Of Pd
What is PD? What are the motor symptoms of PD and how do we address them? In this session hear from neurologist Dr. Hiral Shah, community partner Anita Parker, speech therapist Dr. Michelle Troche, occupational therapist Dr. Katrina Long, and caregivers on facing and overcoming the challenges of PD.
Groups For Care Partners
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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Day : Take A Deeper Dive Into The Motor And Non
Learn about the benefits of physical therapy and exercise from Dr. Lori Quinn and common medications from Dr. Hiral Shah. Listen to Mr. Kermit Smiths powerful story about how he lives and thrives with PD. Gain insights on neuropsychology evaluations from Dr. Stephanie Assuras, the role of palliative care from Dr. Benzi Kluger, and nutritional information from Shoshana Genack. Finally, learn caregiving organizations and empowerment skills from Ms. Angela Picardo, a caregiver activist.
Upcoming Meeting Dates At The Silver Spoons Caf In Montour Falls Or Via Zoom:
- Thursday July 21, 2022 Picnic.at Havana Glen State Park. 11:30-1.
Our group covers a wide geographic area from Penn Yan, NY to Corning, NY, Elmira, NY and northern Pennsylvania. Group is open to people with Parkinsons and their family and caregivers. About 2/3 of the time there is an outside speaker, other times are group discussions with a picnic in July and holiday party in December.
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Welcome. This site is designed for my friends in the Southern Tier of NY and Boynton Beach , FL . But much of what Im presenting is good to all with Parkinsons Disease
Very briefly , Ive had Parkinsons since 2004. So thats 16 years. We retired 5 years ago because we were afraid I might make mistakes due to typing errors among other reasons.
We started traveling around 2005 and have taken about 30 land and cruise trips since then. However I injured my back around 2014 and was so bad that at least two trips I had to use a wheelchair. Thanks to great neurological physical therapists and trainers Im now doing great. Ive been doing advocacy for Parkinsons Foundation and other volunteer work and socializing more . Most days I can meet people without having to explain that I have Parkinsons
Exercise, Research and Use a doctor who specializes in Parkinsons to Live Well with this disease.
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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.
Support Groups For Parkinsons Patients
Parkinsons is a chronic, degenerative disease that has symptoms of impaired mobility, body tremors, stiffness of the limbs and torso, difficulty balancing, and fatigue. These symptoms are most severe in the mid and late stages of the disease. Progressiveness of the disease varies tremendously from person to person and treatment should be tailored to meet an individuals needs. Although there is no cure for Parkinsons, managing symptoms can help improve a patients quality of life.
Education is the first step in living well with disease. Organizations dedicated to Parkinsons provide a variety of resources with tips on medication, non-motor symptoms, and coping techniques. Movement disorder specialists usually offer supplemental materials to keep on hand such as treatment pamphlets. Research to find out if there is a local Chronic Disease Self Management Program an organization established by Stanford University that offers weekly educational sessions for Parkinsons patients. Support groups can also be rich sources of knowledge connecting with other patients can offer new insights on treating symptoms and can enhance the learning curve.
Edison Home Health Care is happy to advise and assist you or any loved one who seek appropriate care of Parkinsons disease. Give us a call at 888-311-1142, or fill out a contact form and we will respond shortly.
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Free Support Priceless Rewards
Whatever medical condition you or a family member may be facing, its nice to know that you don’t have to go at it alone.
We encourage you to take advantage of one of the many support groups offered by Burke Rehabilitation Hospital.
Sometimes just talking about things with others who understand has immeasurable benefits.
Parkinsons Support Group Of Upstate New York
Various groups are offered for individuals with Parkinsons disease and their families. They provide support and education, a telephone hotline, newsletter and social events.
- Location: Call or visit the website for information
- Time: Call or visit the website for information
- Fee: Contributions welcomed
- Facilitation: Professional and member facilitators
- Eligibility: For individuals with Parkinsons disease and their families
No specific contact person, Call 234-5355, No e-mail available
P.O. Box 23204 Rochester, NY 14692
Sponsored by: National Parkinson Foundation
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Affliated with Mental Health America and The Mental Health Association in New York State, Inc.
Join us on September 21st from 6 – 8 pm for the “I’m Listening” broadcast as musical artists and celebrities discuss their own mental health and wellness.
You can help support us: https://www.mharochester.org/donate/
If you’re experiencing emotional distress related to the COVID-19 Pandemic, crisis counselors are available 24/7, 365 days a year.If you are in crisis or are thinking about suicide, get connected to a local crisis center and get in touch with someone immediately.
In this time of crisis, we at the MHA would like to reassure our community that we are committed to providing our supports and services through the form of TeleMental Health virtual services.
Also Check: Do People With Parkinsons Have Seizures
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.
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.
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Parkinsons Movement Disorder And Alliance
- 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.
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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