Parkinson, Care Partner and Other Resources
NATIONAL PARKINSON ORGANIZATIONS
National Parkinson Foundation (NPF)
1501 NW Ninth Ave
Miami, FL 33136
1-800-327-4545
www.parkinson.org
The National Parkinson Foundation’s website offers information about PD, provides links to various resources and provides links to a variety of discussion chat rooms and ask the expert forums. NPF offers a set of 10 publications, on various topics about Parkinson disease, which can be ordered free of charge from their toll-free number or downloaded from their website (see top tab “publications”, click on “free publications”). Click on “Discussion Corner” box for “Ask the Doctor”, “Ask the Parkinson Dietician”, “Talk to a Speech Clinician”, “Caregivers Forum”, and “Young-onset conference discussion”.
Physicians, nurses and allied health professionals-click on top tab “NPF programs” and see Allied Team Training for Parkinson (ATTP), an interdisciplinary training program, offering CEUs and CMEs, that prepares professionals and interdisciplinary teams to deliver integrated specialized care to individuals and families living with PD.
Michael J. Fox Foundation
Church Street Station
P.O. Box 780
New York, NY 10008
1-800-708-7644
www.michaeljfox.org
The Foundation’s mission is to find a cure for PD through funded research agenda and ensuring the development of improved therapies to help those living with PD. Website offers additional resources and an online guide for the newly diagnosed and a guide for caregivers.
American Parkinson Disease Association (APDA)
135 Parkinson Avenue
Staten Island, NY 10305
1-800-223-2732
www.apdaparkinson.com
APDA is involved in research, patient support, education and raising awareness about PD. They provide various publications about different aspects of PD which can be downloaded from the website or ordered free of charge through their toll free number.
Parkinson Alliance
P.O. Box 308
Kingston, New Jersey 08528
1-800-579-8440
www.parkinsonalliance.net
New Jersey based, national organization dedicated to raising funds to help finance research for Parkinson disease. The Alliance is responsible for the Parkinson’s Unity Walk, a single day grassroots awareness and fundraising event for Parkinson’s held every spring in New York City’s Central Park. For the Unity Walk, see www.unitywalk.org
Parkinson’s Action Network (PAN)
1025 Vermont Ave., NW, suite 1120
Washington, DC 20005
1-800-850-4726
www.parkinsonaction.org
An advocacy oriented, non profit organization that helps to raise awareness and educate policy makers as to the importance of federal research funding. PAN holds an annual conference in February in DC that combines both presentations about research findings about PD and a day visiting policy makers at the Capitol.
Parkinson’s Disease Foundation (PDF)
1359 Broadway, suite 1509
New York, NY 10018
1-800-457-6676
www.pdf.org
PDF provides funds for research, education for consumers and health care professionals and participates in public advocacy to find the cure for PD. On the website, under publications, persons can find information about video “Diagnosis Parkinson’s disease: You are not alone” a free resource for those recently diagnosed.
Parkinson's Disease Foundation - PD Creativity
PDF is the creator of PD Creativity a project to improve the quality of life by showing the therapeutic value of creativity and encouraging people to pursue their own form of artistic expression. Different works of artistic expression by those living with PD are posted on the website.
RESOURCES FOR PERSONS WITH YOUNG-ONSET PARKINSON
Young-onset Parkinson Network (YOPN)
www.parkinson.org, click on top tab for “NPF Programs”.
APDA Young Parkinson’s Information & Referral Center
www.youngparkinsons.org/pages/index
OTHER RESOURCES
Eldercare Locator
www.eldercare.gov
Supported by the U.S. Administration on Aging, this site links visitors to services for elders and/or disabled people in their local communities. Caregivers can also speak to an information specialist by calling the toll-free Eldercare Locator service 1-800-677-1116.
Health Finder (by U.S. Department of Health and Human Services)
www.healthfinder.gov
This federally-funded research engine helps to find links to all types of health information.
Lewy Body Dementia Association
P.O. Box 451429
Atlanta, GA. 31145
Helpline: 1-800-539-9767
Office: 1-404-935-6444
www.lewybodydementia.org
The Lewy Body Dementia Association provides educational publications, information about support groups, resources, a newsletter and specific help for caregivers.
LSVT (Lee Silverman Voice Treatment) Foundation
www.lsvt.org/main_site.htm
Website contains information about LSVT, a speech therapy program, specially designed and proven effective for persons with PD. Site includes information about where to locate professionals certified in this method of treatment. NYU Rusk Rehabilitation Institute speech-language program uses the LSVT method.
Medicare Rights Center
www.medicarerights.org
For those who have questions or problems regarding health insurance coverage, this non profit, non-governmental website can provide some answers and suggestions.
Melvin Weinstein Parkinson’s Foundation
1340-1272 North Great Neck Road, #193
Virginia Beach, VA. 23454
757-313-9729
www.mwpf.org
This Foundation helps persons with PD who are financially challenged by helping purchase equipment and supplies necessary to maintain a safe and healthy environment.
Motivating Moves for Parkinson’s
www.motivatingmoves.org
This is an approach to exercise that emphasizes coordination, balance, flexibility ,alignment and movement range. DVD of exercise program for persons with PD can be purchased through web site.
National Center on Elder Abuse (NCEA)
www.elderabusecenter.org
1201 15th Street, NW, Suite 350
Washington, DC 2005
202-898-2586
Provides resources on elder care, neglect and exploitation.
The Medicine Program
www.themedicineprogram.com
The Medicine program is a volunteer organization that works in cooperation with the physician to assist patients who qualify to enroll in one or more Patient Assistance Programs offered by most pharmaceutical companies for patients who qualify for free medications.
WE MOVE (Worldwide Education and Awareness for Movement Disorders)
204 West 84th street
New York, NY 10024
1-212-875-8312
www.wemove.org
WE MOVE is a non-profit organization that provides training and educational materials for health professionals, and persons impacted by movement disorders. Organization makes available WE MOVE News, a free electronic service and has many resources on their website.
RESOURCES FOR CARE PARTNERS
Please Note : Many of the national Parkinson disease organizations have specific information, online groups or provide information about local support groups for family care partners.. For example, see the discussion corner box on the home page of www.parkinson.org for an online caregiver discussion forum
Administration on Aging
National Family Caregiver Resource Room
Washington DC 20201
1-202-619-0724
http://www.aoa.gov/prof/aoaprog/caregiver/caregiver.asp
Site offers fact sheets on various aspects about family caregiving as well as information about conferences. Fact sheets include topics such as communicating with health care providers, resolving family conflicts, home modifications and financial tips, among many others.
Caregiver’s Marketplace
8801 West Heather Avenue
Milwaukee, WI 53224
www.CaregiversMarketplace.com
Cash back program for anyone who gives, receives or needs care. Persons, after enrolling in the program, can receive cash back on a variety of products not usually covered by Medicare, such as Depend products for incontinence care or for mobility devices.
Caregiving.com
www.caregiving.com
This site features pages of tools and resources, including online support groups, and a kit for the new caregiver.
Caregiver survival resources
www.caregiver911.com
This web site has all types of resources and information, both general and specific. There are links to other web sites, information on books and conferences for caregivers. Site also links to Today’s Caregiver Magazine.
Family Caregiver Alliance
690 Market Street, Suite 600
San Francisco, CA. 94104
1-800- 445-8106; in California: 1-415- 434-3388
www.caregiver.org
E-mail: info@caregiver.org
The Family Caregiver Alliance is a nonprofit organization that addresses the needs of families and friends providing care at home. The organization is based in California and serves California-based family caregivers. However, its web site offers valuable information for family caregivers, regardless of their locations. Families from all around the country call the toll-free number to request advice.
The Caregiver Alliance has developed a wide array of services based on consumer needs. Its Web site offers research, publications, statistics, fact sheets, public policy news and information on a variety of long-term care concerns. It also offers an online support group in a listserv (e-mail) format. The Caregiving Info & Advice section includes a wealth of information on care strategies, stress relief, community resources, family issues and hands-on care. The Fact Sheetsubsection provides a comprehensive collection of family-friendly publications filled with practical information. For more personal assistance, click on “Ask FCA”. And onlineDiscussion Groups keep you connected, 24 hours a day, with other caregivers.
Friends and Relatives of Institutionalized Aged (FRIA)
18 John Street, Suite 905
New York, NY 10038
Helpline:1- 212-732-4455 ; Office phone: 212-732-5667
www.fria.org
Email Address: Info@fria.org
FRIA’s Mission is to assure that nursing home residents receive prompt, high quality and compassionate care. Even more broadly, they seek high quality, long-term health care for all New Yorkers in the least institutionalized setting possible, by helping relatives become effective advocates for the needs of their loved ones.
Their main tools are a telephone hotline, publications, organizing and assisting family councils within nursing homes, and training workshops for family members and professionals.
National Alliance for Caregiving
4720 Montgomery Lane, 5th floor
Bethesda, MD. 20814
1-301-718-8444
www.caregiving.org
Email: info@caregiving.org
The National Alliance for Caregiving conducts research, develops national projects, and increases public awareness of important family caregiving issues.
Among other components, the site includes the Family Care Resource Connection, which offers reviews and ratings of books, videos, websites, magazines, fact sheets and other resources addressing the range of issues and questions faced by family caregivers. The materials are submitted by non-profit organizations, caregiver advocacy groups, disease-specific groups, government agencies and for-profit companies. New resources are added regularly.
National Association of Professional Geriatric Care Managers
The Family Caregiver Program
1604 North Country Club Road
Tucson, AZ 85716-3102
1-520-881-8008
www.caremanager.org
The National Association of Professional Geriatric Care Managers is a non-profit organization of geriatric care managers. Geriatric care managers assist families and older adults in coordinating and managing long-term care plans and arrangements. They can help with long-distance caregiving, crisis intervention, counseling and support and other tasks. Many are trained in therapy or daily money management. The site offers a database of care managers available by state; find a local care manager. Site also offers ability to purchase various books on the topic of caregiving.
National Caregiving Foundation
1-800-930-1357 and 1-703- 299-9300
801 North Pitt Street, #116
Alexandria, VA 22314
www.caregivingfoundation.org
The National Caregiving Foundation focuses on the concerns, worries, and the sadness of family caregivers. The Caregiver'sSupport Kit is a product of the Alzheimer's Project of the NationalCaregiving Foundation. The Focus of the Caregiver's Support Kit is on Alzheimer's disease; however, much of the information is useful in caring for patients with other conditions requiring care and attention. The Kit is sent free to caregivers who need it. Request a Caregiver's Support Kit by calling toll free number or ordering online.
Park Slope Geriatric Day Center
Family Caregiver Project
199 14th Street
Brooklyn, New York 11215
1-718-499-7701
www.psgdc.org/caregiver-home
Email: caregiver@psgdc.org
While services are based in Brooklyn this site for family caregivers provides much useful information on a variety of matters affecting families.
SAGE Caregiver Services
305 Seventh Avenue, 16th floor
New York, NY 10001
1-212-741-2247
www.sageusa.org
SAGE-Services and advocacy for aging gay, lesbian, bisexual and transgender people, offers information and a host of online groups and other resources.
The Well Spouse Foundation
63 West Main Street, Suite H
Freehold, New Jersey 07728
800-838-0879
www.wellspouse.org
This is a national self-help organization of spouses/ partners of people who are chronically ill or disabled. Its goal is to provide emotional support to well spouses via local support groups, a newsletter, conferences and other activities.