Resources & Links
- Introduction to Resources & Links
- Recommended Reading
- Group Therapy Referral Resources
- Health & Advocacy Resources
- Coping with Trauma: Article and Resources
Health & Advocacy Resources
HOW TO KEEP YOUR PERSONAL HEALTH RECORD
My Personal Health Record is a valuable website that includes a guide to help you be a more active participant in managing your personal health information, ensuring complete documentation of your treatment and medical history.
CareZone is a free app that "makes it simpler to take care of yourself and your family. Keep everything organized and easily coordinate with the people that matter to you."
Dosecast is a free app that “reminds you to take your medications, vitamins, or birth control pills on time, and tracks your medication adherence -- the only medication reminder app with live sync between devices.”
FOR ADDITIONAL SAFETY
Pendant - when pressed, alerts local monitoring station that the wearer needs help. Increases safety and independence, especially for those who live alone. (800) 635-6156.
Bracelets or pendants with phone number for 24-hour emergency medical information
Pendant - when pressed activates an alarm system, and the subscriber will be connected to their emergency response center. Recommended to increase safety and independence at home.
PREVENTION AND SAFETY RESOURCES
2 Minute Breast Exam
This website is a project of Dr. William Goodson, a breast surgeon who has practiced in San Francisco, California for over 25 years. Dr. Goodson believes that "all women should have an annual clinical breast exam and that each breast should be examined for at least one minute (2 minutes for both breasts).This website includes a free online video designed to educate the public and doctors about both the importance and how to do a complete breast exam. This is definitely a case of the old phrase: "an ounce of prevention is worth a pound of cure...."
New Social Services Telephone Number
If you've ever tried to get information on housing, childcare, eldercare or other social services you know how difficult it can be. There are so many services out there, it's hard to know where to start. A new service should make this process much easier. Simply by calling 2-1-1, residents of Contra Costa County and around the Bay Area will reach real people who can make referrals to local social service organizations and agencies. Dial 2-1-1 is a nationwide program, funded largely by United Way in cooperation with local agencies. It's available in many parts of the country. Eventually it will be nationwide. Every county manages the service a little differently. The Contra Costa Crisis Center is handling 2-1-1 calls here. For more information check out the website at: 211.org
For help, call National Crisis Resource Center, 800-273-TALK (8255) or go to suicidepreventionlifeline.org which will direct you to a local resource center.
TRAUMA RESOURCES, LINKS AND INFORMATION
This page includes links to articles and resources for coping with trauma, how to talk to children about natural disasters, violence, and other traumas.
ILLNESS-RELATED FOUNDATIONS AND WEBSITES
Arthritis Foundation Provides community resources, educational events, raises funds for research to improve the lives of individuals with arthritis. Free 6-week Online Arthritis Self-Management Workshop:
Cushings syndrome and endocrine-related resources:
Hormone Health Network The Hormone Health Network helps you and your health care professional have more informed discussions about hormones and health. The on-line resources come from the most advanced clinical and scientific expertise in endocrinology.
Cushing’s Support & Foundation and Research The Cushing’s Support and Research Foundation was established in 1995 to provide information and support to Cushing’s patients and their families. The Foundation was incorporated in the state of Massachusetts as a non-profit organization and is an Associate Member of NORD, the National Organization for Rare Disorders. The CSRF has a Medical Advisory Board consisting of very experienced surgeons and endocrinologists who are world renowned for their expertise on Cushing’s. The CSRF is primarily funded by membership and personal donations. The CSRF maintains a database of many present and past Cushing’s patients willing to support others.
Cystic Fibrosis Research, Inc. Want to watch a short inspiration video of young people living with cystic fibrosis?
One of the events this organization sponsors is "The Cystic Fibrosis CF Teen and Adult Retreat, sponsored by the Cystic Fibrosis Research, Inc., provides a safe and welcoming environment aimed at enhancing positive coping skills, social support and education for people who share common experiences with Cystic Fibrosis. For those of us who attend, it's the most special week of the year when we can be around others who truly understand what it means to be living with CF...Sometimes, it gives us a good feeling...."(we) get a feeling that (we) never, never, never had before..." Some of the participants in this film have had lung transplants, all, except for one group facilitator seen dancing, live with cystic fibrosis. http://vimeo.com/47548391
Depression and Bipolar Support Alliance provides hope, help, support, and education to improve the lives of people who have mood disorders. They offer online resources, a free Wellness Tracker app, advocacy, and peer support services.
Diabetes Society has patient information, resources, and an online chat line
Magic Foundation The MAGIC Foundation is a national non-profit organization created to provide support services for the families of children afflicted with a wide variety of chronic and/or critical disorders, syndromes and diseases that affect a child’s growth. Since its inception the Foundation has grown to include support services for adults who were also impacted by these disorders.
National Endocrine and Metabolic Diseases Information Service An information dissemination service of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). The NIDDK is part of the National Institutes of Health (NIH), which is part of the U.S. Department of Health and Human Services.
The NIDDK conducts and supports biomedical research. As a public service the NIDDK has established information services to increase knowledge and understanding about health and disease among patients, health professionals and the public.
The Pituitary Network (PNA) The PNA is an international non-profit organization for patients with pituitary tumors and disorders, their families, loved ones, and the physicians and HCPs who treat them.
PNA was founded in 1992 by a group of acromegalic patients in order to communicate and share their experiences and concerns. PNA has rapidly grown to become the world’s largest and fastest growing patient advocacy organization devoted to the treatment and cure of pituitary disorders. "PNA is supported by an international network of the world’s finest physicians and surgeons. Our goal is to reach every patient who may be forgotten, abandoned, or worse yet, undiagnosed after many years of suffering. We are doing this in three ways: (1) by providing public awareness programs and educational seminars, (2) by assisting the medical community in developing uniform standards for early diagnosis, surgery, radiation, pharmacological treatment and follow-up, and (3) by having interactive web sites and a referral program on these web sites."
Grass roots organization, run by and for people who have heart disease.
National Alliance on Mental Illness
This grass-roots self help organization's mission is: "Informing, educating and supporting people with mental illness and their families." They offer wonderful resources for family members, including online and in-person support groups
National Mental Health Consumers Self Help Clearinghouse
Self Help Group Referrals (800) 553 4539
National Mental Health Association
The National Pain Foundation
The NPF Mission is "To improve the quality of life for those living with pain through information, education, and support that connects persons with pain to each other and to those that can help."
National Study Group on Chronic Disorganization's Mission is to benefit people affected by chronic disorganization. "The NSGCD explores, develops and communicates information, organizing techniques to professional organizers, related professionals and the public." Provides free, downloadable advice to help you be more organized and efficient.
Osteoporosis: Foundation for Osteoporosis Research and Education
Osteoporosis is a disease that breaks down the tissue in our bones, making them fragile and more likely to break. "Treatable and preventable! Osteoporosis is epidemic in the United States and a major public health threat for an estimated 44 million Americans or 55 percent of the people 50 years of age and older. One out of every two women and one in five men will suffer from osteoporosis in their lifetime. However, younger people also are vulnerable to this disease." American Bone Health's Dr. Claude Arnaud, President of the Medical and Scientific Advisory Board.
Sickle Cell Anemia
Stanford Sleep Disorders Clinic: Trouble Sleeping? Check out these helpful tips from the Stanford Sleep Clinic. link: www.stanford.edu/~dement/howto.html
TWELVE STEP RECOVERY PROGRAMS
S-Anon International Family Groups (for those who have been affected by someone else's sexual behavior)
SITES FOR PEOPLE WITH MEDICAL ILLNESS & THEIR LOVED ONES
Patient-focused nonprofit committed to bringing friends and family together during any form of health journey. Free, personalized web sites and blogs for those experiencing significant life events, helps those wishing to stay in touch with family and friends during significant life events. The easy to start and use formats help people stay informed and connected. CaringBridge authors craft messages that are informative and reflect a special sensitivity to privacy issues. At each web site, well-wishers can read updates about the subject and leave messages in the Guestbook.
Provides free websites, blogs and supportive information for patients that connect friends and family during a health challenge.
Lotsa Helping Hands
Caregiver-focused resources, online websites, Help-Calendar, etc. Helps friends, family, colleagues, and neighbors assist loved ones in need manage and coordinate offers of help.
RESOURCES FOR AGING
AARP: American Association of Retired Persons
America's largest organization that represents people over 50. Their website has a wide range of helpful pieces about coping with health problems, or planning for retirement.
Ask Medicare website, medicare.gov/caregivers launched by the Centers for Medicare and Medicaid Services includes information on navigating systems for Medicare beneficiaries: health care services, links for support for patients and caregivers.
ElderChicks Blog is a light-hearted blog for “Elder Chicks”.
Exit Strategies: A Plan and A Place For Your Estate Information, an interactive CD and workbook by Jeanne K.Smith.
This helpful CD provides a way to create and save documents that help people plan for and address: Personal Information, Legal Issues, Household, Health, Insurance, Vehicles, Finances, Final Arrangements and Spiritual Issues. Users can adapt the forms meet each persons individual and/ or family needs. The CD can be ordered online at www.exitstageright.com
National Association of Area Agencies on Aging’s mission is to “build the capacity of its members to help older persons and persons with disabilities live with dignity and choices in their homes and communities for as long as possible.”
The National Council on Aging - Benefits CheckUp
Are You Getting all the Government Benefits You Are Entitled To? The NCOA reports that 5 million older adults are currently missing out on benefit programs that can provide help with health care, transportation, housing, energy assistance, and other services. Benefit CheckUp is a free, easy-to use public service that will help you find out what benefits you qualify for and how to get them.
Patient Advocate Foundation
Mediation and arbitration services for patients with debilitating and life-threatening illnesses.
Ask Medicare: Help for Caregivers
Ask Medicare website, medicare.gov/caregivers launched by the Centers for Medicare and Medicaid Services includes information on navigating systems for Medicare beneficiaries: health care services, links for support for patients and the "nearly 66 million American" caregivers.
Cystic Fibrosis Legal Information Hotline
Free, general legal information resource about laws designed for people with cystic fibrosis, their caregivers, and others.
The Department of Justice
Maintains an ADA Information Line to assist the public in understanding and interpreting the Americans with Disabilities Act. Line also provides contact information for the Equal Opportunity Employment Commission, the Architectural and Transportation Barriers Compliance Board, the President's Committee on Employment of People with Disabilities, and other agencies with regulatory responsibility under the ADA
(800) 514-0301 (voice), (800) 514-0383 (TTD)
Independent Living Centers
Services and resources for individuals with disabilities. "Definition of a Center for Independent Living from Section 702 of the Rehabilitation Act of 1973, as amended: Center for Independent Living. The term center for independent living' means a consumer controlled, community based, cross disability, nonresidential private nonprofit agency that is designed and operated within a local community by individuals with disabilities and provides an array of independent living services." To find your local center contact your local department of rehabilitation, call (713) 520 0232.
Disability Rights California provides protection & advocacy for Californians
The National Organization of Social Security Claimants Representatives
Helps those denied Social Security Disability Insurance
The Social Security and Disability Resource Center is an online medication resource center that includes leads for getting help with the cost of medication.
Social Security Disability Secrets "Tips, secrets and advice to win social security disability (SSDI, SSD) & SSI Benefits:"
INFORMATION AND RESOURCES ABOUT ADVANCED HEALTH CARE DIRECTIVES
The American Bar Association's toolkit
To help you plan for how you want your health care decisions handled when and if you are unable to speak for yourself in an emergency as well as detailed information about issues to consider when planning for end-of-life choices.
HEALTH RELATED RESOURCES
Major Health Search Engine
a medical library designed to be used by individuals who are not health care professionals. If you become a member you can order full text medical articles.
National Center for Health Statistics
United States' principle health statistics agency, part of the Center for Disease Control and Prevention.
United States National Library of National Institutes of Health
includes links to Biomedical journal literature from MEDLINE/PubMed, also en espanol, provides free health and drug information for patients, family and friends.
The American Academy of Pain Management produces a monthly newsletter called "Currents" that has a lot of useful information on current research relating to pain and pain management. As one person wrote, "I like it because it saves me from having to spend a lot of time searching the literature myself."
There are two ways to access it: (1) subscribe to it and receive it monthly in your email or (2) go directly to the following link and scroll down to the Newsletter Archive section- http://www.painmed.org/search.aspx?f=80&s=newsletter. You can subscribe to Currents and from the Academy's main page: http://www.painmed.org
PRESCRIPTION RESOURCES AND ASSISTANCE
NeedyMeds is an online medication resource center that includes leads for getting help with the cost of medication.
Partnership for Prescription Assistance
Many Americans are having problems being able to pay for necessary prescription medication. This program offers one possible solution. This program "brings together America's pharmaceutical companies, doctors, other health care providers, patient advocacy organizations and community groups to help qualifying patients who lack prescription coverage get the medicines they need through the public or private program that's right for them. Many will get them free or nearly free. Its mission is to increase awareness of patient assistance programs and boost enrollment of those who are eligible. Through this site, the Partnership for Prescription Assistance offers a single point of access to more than 475 public and private patient assistance programs, including more than 180 programs offered by pharmaceutical companies. To access the Partnership for Prescription Assistance by phone, you can call toll-free, 1-888-4PPA-NOW (1-888-477-2669)."
FINANCIAL ASSISTANCE AND RESOURCES
Guidance and help for Californians facing hefty hospital bills.
NeedyMeds is an online medication resource center that includes leads for getting help with the cost of medication.
WHAT IS HOSPICE ?
Hospice care provides quality of life and comfort at the end of life. There are many different hospice organizations which offer different services, throughout the US and the world.
The National Hospice and Palliative Care Organization provides information about the wide range of hospice services, including those within the same communities. Their website includes a referral directory and a collection of user-friendly, helpful resources and information about hospice. HelpLine: 800/658-8898.
Hospice of the East Bay provides hospice and palliative care services that support and comfort people and their loved ones through the final stages of life. For more information: (925) 887-5678.
WHY PARTICIPATE IN A CLINICAL TRIAL, THEY ARE NEVER SUCCESSFUL
Q: Why should I participate in a clinical trial? If I participate in a trial I take a risk and probably the trial will fail to prove that there is a better drug or treatment, so why should I put myself at risk with no chance of anyone getting any benefit?
A: This is an excellent question that many of us ask. However, we also know that clinical trials are vital in our search for better methods of prevention, detection and treatment for not only prostate cancer, but for all cancers and diseases. In a study published in "Archives of Internal Medicine" (2008; 168:632-642) Dr. Benjamine Djulbegovic M.D., Ph.D. from the Lee Moffitt Cancer Center and Research Institute at the University of South Florida, Tampa Florida assessed the success rates of NIH sponsored phase III clinical trials.
The study assessed 624 trials involving over 216,000 different subjects. He found that 25% to 50% of the trials demonstrated that a new, novel treatment that was the subject of the trial was successful. So, don't assume that you are not contributing to making significant progress towards better treatments. Also, remember that even negative results contribute to our knowledge base.
Written by Joel T. Nowak MA, MSW
Used with author's permission, from www.advancedprostatecancer.net a rich resource that shares experiences, support and advice for men with advanced and recurrent Prostate Cancer.
Note: If you have a non-profit resource that you think others would benefit from knowing about, please contact Dr. Steiner to have the information included here.