For Care Partners/Caregivers of Individuals Living with Parkinson’s Disease
There are many active organizations working on research to treat and cure Parkinson’s Disease and support individuals living with PD and their caregivers. At Lifespan Respite WA, we focus on caregivers. Our team gathered resources from these organizations to help caregivers in their lives and their caregiving work.
American Academy of Neurology’s Brain&Life website has a quick search function for all types of neurological diseases including Parkinson’s, as well as clinical guidelines (best practices) and information on clinical trials and clinical research.
“Dedicated to helping people with Parkinson’s disease live well today. Provides information, inspiration, tools, resources, and opportunities to people living with Parkinson’s Disease and care partners to better manage their disease and promote increased engagement in health.”
Among a list of more traditional resources, the Davis Phinney Foundation focuses in on person-to-person support for those living with Parkinson’s and their care partners:
- Parkinson’s Ambassadors: located in 35 states and Canada (one on one support)
- “We have more than 70 Ambassadors located in 35 states and Canada. Ambassadors are available to connect with individuals, families, and groups to help answer questions about living well with Parkinson’s and connect you with resources and relationships to provide support.”
- Living with Parkinson’s and Care Partner Meetups on Zoom (comes with how-tos for Zoom and access to recordings)
- “Our monthly Living with Parkinson’s Meetup brings together all people diagnosed with Parkinson’s—young, old, early, late—for open, honest, real, and always fun conversations about everything you’ve ever wanted to know about Parkinson’s but were afraid to ask.”
Usted puede Vivir Bien Hoy si ha sido diagnosticado con Parkinson y nuestra misión es acompañarlo y apoyarlo durante este camino.
A continuación, encontrará una serie de enlaces a distintos espacios y formularios mediante los cuales queremos establecer un puente de comunicación e información con nuestra comunidad de Parkinson de habla hispana.
Y no olvide que siempre puede contactarnos enviando un correo electrónico a la siguiente dirección: firstname.lastname@example.org.
Sitio Web : En español
- Contacte a un Embajador Líder
- Inscríbete a la Lista de Correo
- Cuestionario Momentos Victoriosos (personas con Parkinson)
- Cuestionario Momentos Victoriosos (aliados de bienestar/cuidadores)
- ¡Ayúdenos a tener contenido relevante y útil! Llene esta encuesta sobre contenidos en español
This research-focused organization does have good advice for caregivers, found under the topic “Care Partners”. The “Support Group” page has some specifics for starting a support group if you don’t find one that works for you, there is this list:
The Parkinson’s Buddy Network is an online community of people impacted by Parkinson’s designed to help you make meaningful connections, engage in important dialogue, find useful resources and build long-lasting relationships.
- NeuroTalk has a robust Parkinson’s disease community.
- Caring.com hosts a Parkinson’s support group.
- HealthUnlocked has Parkinson’s community pages.
- Smart Patients Parkinson’s Disease Community offers self-care tips.
- PatientsLikeMe has a Parkinson’s forum.
MyParkinsonsTeam. The website says “MyParkinsonsTeam is a free social network that makes it easy for you to:
- get the emotional support you need from others like you, and
- gain practical advice and insights on managing treatment or therapies for Parkinson’s disease
Note that this site is run by a for-profit organization, so you may wish to carefully read the “About” section.
“Our Mission is to transform the way people live with Parkinson’s through awareness, education, advocacy, and care.” They serve in Washington, Alaska, Montana, and Idaho.
Social Services: “Northwest Parkinson’s aims to fill in the gaps between neurology visits by providing support for People with Parkinson’s, Caregivers, Family members, and Providers in Washington, Alaska, Montana, and Idaho. Social Work is available to provide PD related education and resources or simply lend a listening ear. We offer:
- 1 to 1 phone consultations to navigate life with Parkinson’s and caring for someone with Parkinson’s. During these consultations we can go over a range of resources from Support Groups, in-home care, placement advisory referrals, Neurology/MDS referrals, financial assistance resources, online and local movement/fitness programs, among others.
- Support Groups. NWPF runs a few different support groups for Carepartners, Adult Children, and Lay Facilitators of PD Support Groups. We also keep a listing of Support Groups in each of the 4 states we service.”
- Many other supports and services
Helpline: 1-800-473-4636 (national)
“Parkinson’s Foundation focuses on research and access to healthcare for individuals living with Parkinson’s Disease. The Pacific Northwest Chapter serves residents of Alaska, Idaho, Montana, Oregon and Washington with local resources”
Support for Care Partners includes among other resources
- Free Care Partner Course
- Books, Audiobooks, Fact Sheets,
- Webinars, Videos (Example video: CareMAP: Advice for Caregivers, from Caregivers)
From the Pacific Northwest Chapter: list of support groups (for in-person, call first)
Stanford Medicine has the Caregiver Corner with fact sheets, blog, articles, videos, and podcasts.