For those who care for someone with Parkinson's disease

Parkinson's disease Resources

Parkinsons introduces us to many terms that we are unfamiliar. For a glossary of PD related terminology, see our glossary.

Organizations

American Parkinson's Disease Association
This web site provides information about Parkinson's Disease, the Udall Act, current events, getting involved, fellowships and grants, video rental, chapters, and information and referral center locations.

Advanced Family Caregiving
Created by the National Family Caregivers Association and the National Alliance for Caregiving, this web site provides valuable tips to help caregivers self-identify (a critical first step) and gain resources on a variety of topics such as counseling, training, and how to navigate the healthcare maze. Caregiver support for caregivers of adults with Alzheimer's disease, stroke, traumatic brain injury, Parkinson's disease, ALS and related brain disorders.

Davis Finney Foundation
The Davis Phinney Foundation was founded in 2004 by Olympic medal-winner and cycling great, Davis Phinney, who was diagnosed with Parkinson's disease in 2000 at the age of 40. Today, Davis is both a role model in the cycling community and an inspiration to the estimated 1.5 million Americans and estimated 10 million worldwide who are currently living with the disease. The Foundation provides supporting programs and research that deliver inspiration, information and tools that will enable people living with Parkinson's to take more control in managing their disease.

Family Caregiver Support Network (FCSN)
A Milwaukee, Wisconsin based free resource center that helps family caregivers of older adults. A family caregiver is a spouse, child, other relative, friend or neighbor who is concerned about, helps or cares for an older adult.

The HollyRod Foundation
Founded in 1997 by NFL quarterback Rodney Peete and actress Holly Robinson Peete in honor of Holly's father, Matthew T. Robinson, Jr, the organization is dedicated to providing medical, physical and emotional support to those suffering with Parkinson's disease. The HollyRod Foundation Web site provides information about Parkinson's Disease, events, contact information and links to other resources.

Muhammad Ali Parkinson Center
The Muhammad Ali Parkinson Center (MAPC) is a National Parkinson Foundation Center of Excellence, and a wonderful resource for people with Parkinson's and their families. Their staff is committed to providing excellence in diagnosis, treatment, research and education for people with Parkinson's disease (PD) and other movement disorders.

Michigan Parkinson Foundation
Localized education and support to people with Parkinson's and related disorders, their loved ones and care partners, and the physicians and other allied health professionals who diagnose and treat those affected by the illness. Monthly Care Partner Support Group.

National Family Caregivers Association
NFCA was the first national, charitable organization dedicated to making life better for all of America's family caregivers. Provides service in the areas of information and education; support and validation; public awareness and advocacy.

National Institute of Neurological Disorders and Stroke (NINDS)
This site contains a pamphlet written by the National Institute of Neurological Disorders and Stroke (NINDS). NINDS, one of the US Government's 17 National Institutes of Health in Bethesda, Maryland, is part of the Public Health Service within the US Department of Health and Human Services.

National Organization For Empowering Caregivers
The NOFEC is dedicated to providing assistance, education, support, respite and referrals for informal family caregivers, as well to promote public awareness about the realities of caregiving. They are committed to encouraging mutual collaboration with other organizations to serve the growing needs of family/informal caregivers.

National Parkinson Foundation
This is the web site for the NPF and has a complete menu of information on Parkinson's disease including support groups, patient services, disease information, clinical studies, a library, news, events, patient services, other links, and more.

Northwest Parkinson's Foundation
One of the most active Parkinson's organizations in the U.S. with an eye on improving the quality of life for those touched by Parkinson's Disease – patients, families and caregivers.

Parkinson's Disease Foundation
This is the web site for the Parkinson's Disease Foundation and contains information about Parkinson's disease, the foundation and an updated news area.

Parkinson & Movement Disorder Alliance
Local opportunities for people impacted by Parkinson's and other movement disorders to learn, live more fully and connect to a support community in Arizona. PMDAlliance does their work through conferences, virtual programs, support group facilitation, and social events. For more information, call (800) 256-0966 or visit their website.

Parkinson's UK
Primary Parkinson's support and research charity in the United Kingdom. For more than 40 years they've been working to find a cure and improve life for everyone affected by Parkinsons disease. Parkinson's UK has an extensive library of publications for physicians, patients and caregivers. To view their publication list, click here.

The Parkinson Alliance
The Parkinson Alliance was formed in January of 1998 with the aid of the National Parkinson's Foundation. Primarily designed for the Parkinson's disease patient with information on support groups, news, links to other PWP (people with Parkinson's) WebLink sites, jokes, political developments, and news.

Informational Sites

BioMedSearch
This is a free biomedical search site which has all of all of NIH's PubMed documents, plus many more (often in full text). People around the world have turned to the web for health and scientific information. BioMedSearch aggregates a vast number of authoritative documents in one place to make finding and sharing the right information easy, fast and free. It also has account features such as portfolios to save documents, the ability to share documents (and comment on them) between users, and keyword-based alerts.

Caring.com
Founded in 2007, Caring.com provides informative articles, helpful tools, and a comprehensive local directory of caregiving services for those seeking information and support as they care for aging parents, spouses, and other loved ones. Their mission: to help the helpers. We equip family caregivers to make better decisions, save time and money, and feel less alone – and less stressed – as they face the many challenges of caregiving.

Caregiver.com
A leading provider of information, support and guidance for family and professional caregivers. Founded in 1995, they produce Today's Caregiver magazine, the first national magazine dedicated to caregivers, the "Sharing Wisdom Caregivers Conferences", and the web site, caregiver.com which includes topic specific newsletters, online discussion lists, back issue articles of Today's Caregiver magazine, chat rooms and an online store. Caregiver Media Group and all of it's products are developed for caregivers, about caregivers and by caregivers.

CARE - for CareGivers of People with Parkinson's
A novel approach to providing information to caregivers. Information on this site is drawn from the messages that are posted to the CARE (Caregivers Are Really Essential) forums. This is information from people who are who are Caregivers, either directly or indirectly, of people who are living with parkinson's.

Drug Watch
The drugs used to treat Parkinson's disease, such as Mirapex, Levodopa, and Requip can have potentially harmful side effects if not monitored closely. Additionally, when these drugs are prescribed in combination with drugs for other disorders, the risks for serious illness or even death increases greatly. Drug Watch is a Web site dedicated to educating the public about the details of prescription and over-the-counter medications, as well as aiding in the protection of patients and consumers by informing them of any associated side effects.

Health Finder - Government Access to Libraries
Healthfinder is a free gateway to reliable consumer health and human services information developed by the U.S. Department of Health and Human Services. Healthfinder can lead you to selected online publications, clearinghouses, databases, web sites, and support and self-help groups, as well as the government agencies and not-for-profit organizations that produce reliable information for the public.

National Library of Medicine
The National Library of Medicine's MEDLINEplus information pages are designed to direct you to resources containing information that will help you research your health questions. They are designed for educational use only and are not intended to replace advice from a health professional.

Medicine Net
A network of U.S. board-certified physician writers and scientists providing in depth medical information for consumers through the interactive web site.

Parkinsons disease Control
Created by Healthology, this site features content created by PD thought leaders and medical experts to provide a full range of information about Parkinson's disease, current treatment options, the latest research, and more. Also, patients and their caregivers offer personal testimonials about how they are able to cope with Parkinson's disease. Parkinsons Control.com features streaming video programs with full text transcripts, which creates a fully interactive experience for anyone seeking information on Parkinson's disease.

Parkinson's Unity Walk
The Parkinson's Unity Walk is an event held in New York City in the fall of each year to increase public awareness about PD and raise funds for research.

Parkinson's disease Care on RemedyFind
RemedyFind is a free, unbiased site (not sponsored by drug companies etc.) where individuals can rate the effectiveness of the Parkinson s Disease treatments they have tried.

Worldwide Education and Awareness for Movement Disorders
One of the Internet's most comprehensive resources for movement disorder information and the hub of movement disorder activities on the Web. The site's mission is to increase awareness of neurologic movement disorders and make early diagnosis, up-to-date treatment, and patient support a reality for all people living with movement disorders.

Senior Information

American Association of Retired Persons
A nonprofit, nonpartisan association dedicated to shaping and enriching the experience of aging for its members and for all Americans.

www.benefitscheckup.org
BenefitsCheckUp helps find programs for people ages 55 and over that may pay for some of their costs of prescription drugs, health care, utilities, and other essential items or services.

Federal Government Agencies

Centers for Medicare & Medicaid Services (CMS)
Previously known as the Health Care Financing Administration (HCFA, this federal agency administers the Medicare program and works in partnership with state governments to administer Medicaid, the State Children's Health Insurance Program (SCHIP), and health insurance portability standards. In addition to these programs, CMS has other responsibilities, including the administrative simplification standards from the Health Insurance Portability and Accountability Act of 1996 (HIPAA), quality standards in long-term care facilities (more commonly referred to as nursing homes) through its survey and certification process, and clinical laboratory quality standards under the Clinical Laboratory Improvement Amendments.

Administration on Aging
In response to the growing number of older people and their diverse needs, the Older Americans Act of 1965 as Amended calls for a range of programs that offer services and opportunities for older Americans, especially those at risk of losing their independence. The Act established the Administration on Aging (AoA), an agency of the U.S. Department of Health and Human Services, which is headed by the Assistant Secretary for Aging in the Department.

Social Security Online
Provides information about Benefit Information Publications (retirement, survivors, disability and supplemental security income publications) and how to apply for social security retirement benefits, etc.

Medicare Info for Caregivers
Includes information on navigating throigh Medicare, healthcare services, links to partner organizations that assist caregivers, and personal caregiver anecdotes.

National Institute of Neurological Disorders and Stroke
The NINDS, an agency of the U.S. Federal Government and a component of the National Institutes of Health and the U.S. Public Health Service, is a lead agency for the Congressionally designated Decade of the Brain, and the leading supporter of biomedical research on disorders of the brain and nervous system.


New Medicare Prescription Coverage Information
From the Official U.S. Government Site for People with Medicare, nformation about Medicare prescription drug coverage, what it is, who can get it, when you can get it, how can you get it and why you should get it.

Department of Veterans Affairs (VA) National Caregiver Support Line
On February 1, 2011, the Department of Veterans Affairs (VA) opened a toll-free National Caregiver Support Line, housed at the Canandaigua VA Medical Center campus in Canandaigua, New York. This support line will serve as a primary resource/referral center to assist caregivers, veterans and others seeking caregiver information to help in the care of our Nation's Veterans. Calls will be answered by VA employees who are licensed clinical social workers. Learn more about the National Caregiver Support Line.

Miscellaneous

American Academy of Neurology
The American Academy of Neurology is a medical specialty society established to advance the art and science of neurology, and thereby promote the best possible care for patients with neurological disorders.

Center for Neurologic Study
The Center for Neurologic Study Home Page is designed to present our current activities on the WWW. CNS is a non profit organization dedicated to research and treatment of neurological diseases. The Center was founded in 1979 with the intent of helping patients and families who have been affected by presently incurable neurologic disease. To accomplish this the Center focused on experimental treatment and patient / family support and education.

Society for Neuroscience
The Society for Neuroscience is the world's largest organization of scientists and physicians dedicated to understanding the brain, spinal cord and peripheral nervous system. Neuroscientists investigate the molecular and cellular levels of the nervous system; the systems within the brain, such as vision and hearing; and behavior produced by the brain. This research provides the basis for understanding the medical fields concerned with treating nervous system disorders.