Your Guide to Parkinson's Resources

Our monthly young onset specific newsletter keeps you updated on the latest research, lifestyle articles and latest events occurring in the YOPD community. Be sure to subscribe to ensure you don't miss out on the latest news/events.

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Next Step In Care provides user-friendly guides and checklists for Caregivers and Healthcare Provides on topics such as Becoming a Family Caregiver, Hospital Stay and Discharge Planning Options, Rehabilitation and Home Care. They also provide links to other available resources, a terms and definitions page for common medical terminology, and helpful articles.


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UCTV

9500 Gilman Drive, M/C 0176T
La Jolla, CA 92093-0176
800-742-5117
http://www.uctv.tv/search-moreresults.aspx?keyword=parkinson%27s

UCTV offers the public an extensive library of video presentations on Parkinson's disease from leading physicians. Use the keyword search function to find programs on PD-related topics such as: brain function, genetics, dietary/nutritional supplements, physical therapy, pscyhotherapy and more.

Listed in: Physicians & Clinics, Other Healthcare Providers, Counseling/Therapy, Complementary and Alternative Medicine, Supplements, and For Family & Friends
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USA.gov

USA.gov, Office of Citizen Services 1275 First Street, NE
Washington, DC 20417
800-333-4636
http://www.usa.gov/Citizen/Topics/Health.shtml

Find an A-Z list of health topics and resources on insurance, prescription drugs, nutrition, caregiving, and more on this government Web site.

Listed in: Physicians & Clinics, Other Healthcare Providers, Prescriptions, Supplements, COBRA, Options for the Uninsured, and For Family & Friends
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National Caregivers Library

901 Moorefield Park Drive Suite 100
Richmond , VA 23236
804-327-1111
http://www.caregiverslibrary.org/caregivers-resources/grp-checklists-forms.aspx

This library consists of hundreds of useful articles, forms, checklists and links to resources. It is organized into logical categories that address the key needs of caregivers and their loved ones. The library also includes an entire section for employers.

Listed in: Budgeting & Planning and For Family & Friends
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The Caregiver Health Self-assessment Questionnaire will help caregivers analyze their own behavior and health risks and, with their physician's help, make decisions that will benefit both the caregiver and the patient. The Caregiver Self-assessment Questionnaire will enable physicians to identify and provide preventive services to an at-risk but hidden population and improve communication and enhance the physician-family caregiver health partnership.

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You may know that VA provides benefits and services for Veterans, but did you know that VA also has a number of services designed specifically to support you in your role as a Family Caregiver? VA values your commitment as a partner in our pledge to care for those who have "borne the battle," and we have several support and service options designed with you in mind. The programs are available both in and out of your home to help you care for the Veteran you love and for yourself.

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The mission of the ARCH National Respite Network and Resource Center is to assist and promote the development of quality respite and crisis care programs in the United States; to help families locate respite and crisis care services in their communities; and to serve as a strong voice for respite in all forums.

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Many times caregivers feel isolated and overwhelmed, and end up neglecting their own health and needs. That’s why The Monday Campaigns has created Caregivers’ Monday, an initiative that will find and assemble the latest tips, news and key resources to help caregivers take good care of themselves, manage stress and find support. It is our hope that Caregivers’ Monday will remind these hardworking individuals that, at least on Mondays, they should take some time out for themselves.

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National Family Caregiver Association

10400 Connecticut Avenue Suite 500
Kensington, MD 20895-3944
1-800-896-3650
http://www.thefamilycaregiver.org/

The National Family Caregivers Association educates, supports, empowers and speaks up for the more than 65 million Americans who care for loved ones with a chronic illness or disability or the frailties of old age. NFCA reaches across the boundaries of diagnoses, relationships and life stages to help transform family caregivers' lives by removing barriers to health and well being.

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Well Spouse Association

63 W. Main Street, Suite H
Freehold, NJ 07728
(800) 838-0879
http://www.wellspouse.org

Well Spouse advocates for and addresses the needs of individuals caring for a chronically ill or disabled spouse/partner. They offer peer to peer support and educate healthcare professionals and the general public about the special challenges and issues "well" spouses face every day. Visitors to this Web site can search for a local support group as well as find links to other caregiving resources.
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The National Healthy Marriage Resource Center

301 NW 63rd Street - Suite 600
Oklahoma City, OK 73116
(866) 916-4672
http://healthymarriageinfo.org/

Funded by the Department of Health & Human Services, this organization provides information about and resources for maintaining a healthy marriage/relationship. Search the site for keywords: "chronic illness," for specific articles and resources related to the emotional and financial strain a partner's illness can have on a relationship.
Listed in: Mediation & Divorce and For Family & Friends
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Stanford University School of Medicine Developed by Stanford University, this six-week chronic disease stress-management program helps those living with a chronic illness manage all aspects of their treatment. This program is held in community settings (churches, libraries, hospitals, etc.) and is facilitated by two trained leaders. See "Organizations Offering Our Programs" to find a program near you or visit the "Training" section to bring the program to your organization.
Listed in: Case Management Services and For Family & Friends
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Lutheran Family Services

700 Light Street
Baltimore, MD 21230
http://www.lutheranservices.org

Lutheran Family Services is a national not-for-profit organization providing community development, housing, disability, case management, and mental health services. Counseling services for individuals, couples, children and families are frequently available on a sliding fee scale based on ability to pay. Visit their Web site to find out which programs and services are offered by the locations near you.
Listed in: Counseling/Therapy, Case Management Services, and For Family & Friends
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Lotsa Helping Hands

2 Clock Tower Place, Suite 610
Maynard, MA 01754
http://apda.lotsahelpinghands.com/caregiving/home/

APDA has joined with Lotsa Helping Hands, a Web-based caregiver support service, to offer friends and family members an easy way of staying informed and coordinating care. Create a personalized on line Web page and keep track of who may be able to lend a hand and how.
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Faith in Action is a network of interfaith volunteers helping to provide care in nearly every community. Services range from transportation to bill paying to respite care. Visitors to this Web site can search for services available in their state / city / county.
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Family Caregiver Alliance (FCA)

180 Montgomery Street, Suite 1100
San Francisco, CA 94104
(800) 445-8106
http://www.caregiver.org

The Family Caregiver Alliance was the first community-based non-profit organization in the country to address the needs of families and friends providing long-term care at home. The FCA now provides programs at national, state, and local levels to sustain caregivers. They provide information on various caregiving issues, including legal matters and various health conditions.
Listed in: For Family & Friends and Estate & Special Needs Planning
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Chapel Hill Training-Outreach Project, Inc.

800 Eastowne Drive, Suite 105
Chapel Hill, NC 27514
http://chtop.org/

Chapel Hill's mission is to develop, demonstrate, and deliver programs that enhance the lives of families living with a chronic illness. This Web site has a Respite Locator Service where families can search for respite programs offered in their state.
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The APDA National Young Onset Center was created to provide information, education, and support specifically for people with young onset PD, their family members, friends, and healthcare providers. Through the Caregiver-to-Caregiver program, family members of people with Parkinson's can get connected to others that share similar interests and concerns.
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Case Management Society of America

6301 Ranch Drive
Little Rock, AR 72223
(501) 221-9068
http://www.cmsa.org

This national association of case management professionals offers "Consumer" information about why and when a case manager could be used to coordinate care and services.
Listed in: Case Management Services and For Family & Friends
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Many organizations and professionals providing programs and services to the elderly also assist younger people with disabilities. The Eldercare Locater, a public service of the US Administration on Aging, can help you find agencies by ZIP code that are providing community-based services such as case management, benefits advocacy, transportation, home care, etc. The area Agencies on Aging coordinate these services and, in some cases, are able to offer them at no cost or at a reduced cost.
Listed in: Case Management Services, For Family & Friends, and Transportation

1 Comment

This is way more hpelufl than anything else I've looked at.

Laticia, Oct 22, 2011

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Your local Information and Referral Center Coordinator can provide you with referrals and make sure you know about the educational and support activities available in your community. 

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