Bipolar Disorder Resources
Last updated: April 2011
|IV.||LIFE CHARTING & OTHER SELF-MONITORING STRATEGIES|
Depression and Bipolar Support Alliance: http://dbsalliance.org
Largest national education and advocacy group on Mood Disorders, Headquartered here in Chicago. Supports research, education, clinical trials. Local and national chapters w/ support groups and meetings, newsletters, ask the experts sections. Web site is phenomenally extensive and well-organized. Info is current and accurate. Best single source of up-to-date info and resources about the illness.
Depression and Bipolar Support Alliance (DBSA)
730 N. Franklin Street, Suite 501
Chicago, Illinois 60610-7224 USA
Toll free: (800) 826-3632 (800) 826-3632
Fax: (312) 642-7243
1. Depression and Bipolar Support Alliance: http://dbsalliance.org
Like an upscale department store, this site presents only high quality information, laid out in a well-designed, clear, and highly attractive manner. The DBSA is the largest national education and advocacy group on mood disorders, headquartered here in Chicago, IL. Supports research, education, and clinical trials. Local and national chapters with support groups and meetings, newsletters, and ask the experts sections. Information is current and accurate. A great source and first stop for basic education about the illness. Website features:
- Signs and symptoms of bipolar disorder
- What the diagnosis means
- Links to support groups, both online and in the community
- Online forums for patients and families
- Information on clinical trials and other resources
2. Bipolar Disorder Resource Center: http://www.aacap.org/cs/BipolarDisorder.ResourceCenter
The place on the internet for reliable and balanced information on childhood and early adolescent bipolarity. Containing diagnostic, treatment and other educational material, the American Academy of Child and Adolescent Psychiatry site includes FAQs, facts for families, and video clips. For clinicians, updated guideline links are provided, including assessment tools, tips for monitoring weight gain and other medication side effects, and patient handouts. One item I liked in particular, this site presents data on both pharmacotherapy and psychotherapy.
3. PsychEducation: http://www.psycheducation.org
If the DBSA site is an upscale department store, psycheducation.org is that special, independently owned, quirky retailer with deep stockpiles of buried treasure. Run by Corvallis, Oregon psychiatrist Jim Phelps, psycheducation.org provides a depth of information on bipolar disorder that is not found elsewhere on the web. Just like an independent store owner who is passionate about their wares, Dr. Phelps’ passion for this clinical area is on obvious display. For example, a somewhat partisan opponent to the use of antidepressants for bipolar depression, he amasses dozens and dozens of scientific references about the dangers, lack of effectiveness, and alternatives to antidepressant pharmacotherapy. Other areas that are lovingly and painstakingly covered: the bipolar spectrum, the fundamental importance of mood stabilization, bipolar conditions in the primary care setting, chronotherapeutic treatments and much more. Like any connoisseur, Dr. Phelps makes no effort to disguise his views or hide his likes and dislikes. He presents information in a folksy and digestible manner that is both simple and sophisticated. Extremely well referenced. Website features:
- Updates on current research
- Tips on how to find a psychiatrist or therapist
4. McMan’s Depression and Bipolar Web: http://www.mcmanweb.com
Another great indie site on mood disorders, Mcmanweb.com is run by an articulate, informed financial journalist with bipolar disorder, Jim McManamy. Like psycheducation.org, this spot has a distinctly personal feel with an additional patient-based, knowledge-is-empowerment perspective. Though his views and tone seep through his writings, the information presented here is generally accurate and current. Links to many journal articles, personal accounts, and other sites. This site is up-to-date and advocates for people suffering from bipolar disorder.
5. International Bipolar Foundation: http://www.internationalbipolarfoundation.org
Another education, advocacy and research-promoting group, this IBF website provides clear, brief facts about this illness, an expansive list of international groups, and a complete menu of informational resources on the web.
OTHER SITES: RESEARCH
The Juvenile Bipolar Research Foundation: http://jbrf.org
The Juvenile Bipolar Research Foundation is the first charitable organization solely dedicated to the support of research for the study of early-onset bipolar disorder. The board is a remarkable one, made up of dedicated parents, treating professionals, and world-class clinical investigators and basic science researchers. Mainly a fundraising organization that supports research into juvenile bipolar disorder.
Stanley Medical Research Institute: http://www.stanleyresearch.org
Foremost funder and coordinator of national and international research on bipolar disorder and schizophrenia. Funds and lists clinical trials on novel drug compounds, psychotherapies, electrical stimulation treatments, sleep modifications, etc. Identifies ongoing trials and whether they are accepting new patients. This site is only about research, not clinical practice.
NIMH-sponsored website that provides info for public and researchers on this national, multicenter study of bipolar disorders. It includes a complete list of all publications generated from the study so far. The STEP-BD study is the largest North American study ever undertaken to exclusively examine bipolar disorder.
OTHER SITES: CLINICAL INFORMATION
Bipolar Aware: http://www.bipolaraware.co.uk/index.html
A site created by Mr. Mark Hannant from the UK who has bipolar disorder; a colorful and user-friendly guide for recognition, treatment and prevention; used to have forums and chat room, was not active in July, 2007.
Bipolar Disorder: http://faculty.washington.edu/chudler/bipolar.html
From home page of Dr. Eric Chudler, a PhD psychologist who teaches neuroscience at Washington University. This site teaches basics about this disorder, including childhood bipolarity.
Bipolar Disorder: www.baltimorepsych.com/Bipolar.htm
Short articles writings by two psychiatrists, GlennBrynes, MD-PhD, and Carol Watkins, MD, on different aspects of bipolar disorder, including childhood disorder; oriented toward lay person.
Bipolar Disorder and African American: www.nmha.org/infoctr/factsheets/BipolarDisorderAfricanAmericans.cfm
Now under Mental Health America, an excellent site on considering specific needs from a cultural and ethnic understanding, with links to African American physicians, psychiatrists, and pastoral counselors.
Bipolar Disorder: Signs, Symptoms and Treatment:
A helpguide created in 1999 by the Rotary Club of Santa Monica after two members lost their daughter to suicide; intended to be free from commercial influence. In addition to links, fact sheet provides brief summary of illness. Professional design with detailed but easily digested knowledge.
Bipolar Hope: www.bipolarhope.org
Oriented toward persons with bipolar disorder, is supportive and offers helpful information: brief description of illness, extensive listing of resources, and ezboard discussion group link.
The Balanced Mind Foundation: http://www.thebalancedmind.org/
The child and adolescent analogue to Depression and Bipolar Support Alliance site. It is an excellent, authoritative, comprehensive site providing clinical, educational and research information about pediatric and adolescent forms of the illness. Links to local chapters, advocacy groups, workshops for parents, educators, etc…
Bipolar Noise: www.angelfire.com/fl5/bipolarnoise
Developed by a woman who suffered from bipolar disorder. In addition to basic information, the site touches upon work issues, news and research, self-diagnosis, and personal writings.
Family members from Christian faith are the target audiences. For significant others only; offers information, support, resources, discussion group.
Bipolar World: www.bipolarworld.net
A fun and energetic on-line support group for individuals with bipolar disorder. Besides providing a wide range of tips from symptom management to getting SSI, there are multiple chat rooms and links to different sites. The site is kept current and the information incorporated is fair and non-biased.
A web site created by an Australian woman, Fractal, that covers a wide range of topics that a person with bipolar disorder may encounter. The site is easy to use. Advice is based on personal experiences but generally speaking supportive and helpful, discusses basics plus self medication, illness's tie to creativity. Moderates email discussion group and MOO (chat room).
Guide to Bipolar Disorder: www.bipolarhome.org
A site originally designed by Charles Geitner who suffered from bipolar d/o and chemical dependence. He passed away in 2002. The site provides basic information and down to earth advice with an active message board.
Internet Mental Health: http://www.mentalhealth.com
Very thorough, fact-based site by Canadian psychiatrist Phillip Long. It gives a comprehensive description of bipolar disorder, complete with references, linked articles, self-help groups, books, rating scales, and treatment algorithms—a complete guide for patients, their families, and mental health professionals. Excellent.
Mayo Clinic—Bipolar Disorder:
Aimed at the general public, this site details the signs and symptoms of bipolar disorder.
National Alliance on Mental Illness (NAMI) http://www.nami.org
If you’re looking for information about the full range of psychiatric disorders, the NAMI site covers the basics clearly and simply. From schizophrenia to bipolar disorder, ADHD to Tourette’s, the abc’s of each condition are explained in easy to understand language. NAMI is the nation’s largest grassroots mental health organization dedicated to improving the lives of people with serious mental illness and their families. The site is divided into three categories: inform yourself, find support, and taking action.
Needy Meds: http://needymeds.com
This website has information on Pharmaceutical programs of assistance providing medications for those who qualify.
Pendulum Resources: www.pendulum.org
A not-for-profit and consumer-contributing site that provides brief summaries on newspaper or journal articles on bipolar disorder that were recently published, oriented toward clinicians or audiences interested in more advanced information. This site is professionally designed and easy to navigate. However, drug companies' advertisements might steer visitors to specific products
Surgeon General: www.surgeongeneral.gov
On this website you will find the Surgeon General’s first ever report on mental health (1999) as well as subsequent reports. You can download it or order a copy through the US Government Bookstore in Denver.
Treatment of Patients with Bipolar Disorder:
The American Psychiatric Association (APA) guidelines for the treatment of bipolar disorder, aimed at health professionals. Includes revisions as published.
Web MD—Bipolar Disorder: http://www.webmd.com/bipolar-disorder/default.htm
An overview of bipolar disorder for the lay public.
III. ADVOCACY ORGANIZATIONS
Mental Health America: http://www.nmha.org
Mental Health America (formerly known as the National Mental Health Associations) is a nonprofit organization dedicated to promoting mental wellness. The site has detailed information on a wide range of issues, all major mental illness, and an impressively tailored set of information for target groups, e.g., African American, military, etc. The organization also encourages taking action on social and policy-making issues. Even with the vast amount of information, this site is surprisingly easy to navigate.
National Alliance for the Mentally Ill (NAMI): http://www.nami.org
NAMI is the nation's largest grassroots mental health organization dedicated to improve the lives of person with serious mental illness and their families. The site has tremendous amount of useful information divided into three categories: inform yourself, find support, and taking action. Due to the complexity of this site, it might take several steps to reach the right location.
Depression/Bipolar Support Alliance: http://www.dbsalliance.org/site/PageServer?pagename=home
Per above: best single source of information regarding mood disorders, contacts, and resources on this illness. Provides both local and national resources.
Bazelon Center for Mental Health Law: http://www.bazelon.org
This website has information on mental health law. Use it for questions about the Americans with Disabilities Act and other civil rights issues regarding mental health. Also keep up to date on recent legal decisions regarding mental health issues.
Find information and help on a number of legal issues including housing and occupational needs.
This link is to Job Accommodation Network with suggested accommodations in the workplace for individuals with bipolar disorder.
IV. LIFE/MOOD CHARTING & SELF-MONITORING METHODS
LIFE CHARTING OVERVIEW:
• Monitoring methods to identify and follow mood states over time.
• Designed to develop self-monitoring capacities, better anticipate mood changes, limit and prevent relapse.
• Should be an essential part of every bipolar patient’s treatment.
Life charting is a method originally developed by the German psychiatric researcher, Emil Kraeplin, one of the first to conceptualize manic depressive illness as a distinct psychiatric entity. He developed life charting as a way to track the mood shifts of this illness over time and, in so doing, identify patterns in the nature of these shifts and the environmental and internal causes for these emotional changes.
In my experience, helping individuals develop the capacity for accurate tracking of their mood states is an essential part of therapy for everyone with this disorder. It is a precondition for being able to anticipate and ultimately prevent or limit the effects of new mood episodes on personal functioning.
At present, there are two major versions of life charts available: one from NIMH, and the other sponsored by a not-for-profit group, www.chronorecord.org. Their similarities outweigh their differences. Both provide a simple graphic form for recording daily mood states, hours of sleep, level of anxiety/irritability, menstrual phase, presence of life events/stressors, and medications taken. The NIMH version has a retrospective form for summarizing one’s past history of mood states, and a prospective version for following ongoing emotional status. The NIMH version also provides separate forms for clinicians and patients.
In addition to these two major options, I also encourage patients to create their own methods for tracking moods. Sometimes this produces creative and effective self-monitoring strategies. What’s important is that both patient and clinician develop and share a similar vocabulary for what constitutes a mood state and for how to rate a mood state’s severity. With this shared understanding, remarkable progress can be made in tracking, anticipating and gaining increased control over this frequently unpredictable illness. PDF’s and websites for different methods are listed below
1. NIMH Life Charting.
The most popular and comprehensive version. Some will find the level of detail daunting, but the effort is well worth it. The result will be the uncovering of your own personal signature for this illness, how it operates, what its sensitive to, how it evolves over time, etc..
Here is the link for the manual for using the prospective method
A more simplified explanation and prospective chart can be found here.
The manual and forms for the retrospective version are at this link.
2. Massachusetts General Hospital Mood Chart Forms and Instructions.
Identical to the simplified version listed above. Available for free download here.
3. Chronorecord. website: www.chronorecord.org
Not-for-profit research group that provides electronic, home computer-based software to record and track mood, sleep, stressors, medications and other variables over time. Software costs $25.00 if person agrees to allow their anonymous data to be used in research; $50.00 if not.
Fees include: software, over-the-phone training. Encrypted data is emailed to organization once per month. They process information and send both patient and clinician a graphic read-out of that month’s mood tracking. This is a simple, quick way to track mood changes and it provides extremely important information for both patient and clinician in understanding the course of mood changes, precipitants to episodes, response to medications, etc.
4. Mood 24/7. Website: www.mood247.com
A new and useful twist on the e-monitoring strategy, Mood 24/7 adds daily text reminders to users to prompt them to record their mood ratings for that day. Similar to the Chronorecord site, this information is then aggregated in graphic form and can be viewed online and/or shared w/ friends, family or one's clinician. While the text reminders can be expected to increase adherence with mood ratings, I have the same beef w/ this method as that found on the chronorecord site: the user is forced to give a single value for their emotional state over the past 24 hours. In so doing, complexity is sacrificed for simplicity; mood shifts that occur within a single day and mixed states that encompass both manic/hypomanic and depressed symptoms will be lost in the daily averaging process. Nonetheless, for those patients who have trouble with daily self-assessment, Mood 24/7 provides a user-friendly method that can be expected to capture the major trends in one's emotional life.
5. Monarca. Website: monarca-project.eu
And now for something completely different. And futuristic. And fantastic!
I just returned from the 9th International Conference on Bipolar Disorders where the developers of this technologically innovative system had a poster presentation on their work. This Android-phone-based monitoring device has the potential to leapfrog over existing formats through its multidimensional assessment capacities. In addition to self-reports of mood, Monarca also uses actigraphy (to quantify activity levels throughout the day), galvanic skin response, periodic EEG recording, and analysis of social communication levels as indicated by phone and texting frequency to combine subjective, physiologic and social measures to track and predict changes in affective states over time. As with other e-monitoring programs, the information is aggregated and sent to both patient and clinician to facilitate and enhance episode prediction and overall treatment. Still in the development stages, I anticipate the launch and research potential of this comprehensive assessment package. If it passes the feasibility test (ie, will it be user-friendly enough?), this has the potential to truly revolutionize the clinical care of bipolar patients and bring the life charting methods of Kraeplin squarely into the 21st century.