Madness

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Madness Page 28

by Marya Hornbacher


  Annual direct and indirect costs of bipolar disorder in America: $45 billion

  Number of visits to the emergency room between 2000 and 2003 by people whose primary diagnosis was mental illness: four times that of all other emergency room visits

  Major reasons for this difference: lack of effective treatments and coordination of care for people with mental illness; inaccessibility of treatments for patients without insurance

  Bipolar and schizophrenic people who have no health insurance: 50% (The diagnosis of mental illness makes it far more difficult to get, and keep, insurance, and most insurance plans offer only limited coverage for mental health services and medications.)

  Primary cause of a lack of effective treatments: insufficient research funds

  Projected breakdown of research funding for the 2008 National Institutes of Health:

  Bipolar: estimated at below $250 million (not included in NIH's 2008 report)

  Diabetes: slightly over $1 billion

  Depression: $334 million

  Schizophrenia: $363 million

  Other brain disorders (not including Alzheimer's, which receives $642 million): $4.7 billion

  My Bipolar Facts

  Current medications: Lamictal, Tegretol, Geodon, Wellbutrin, trazodone, Ativan, and a number of supplements that are thought to support mood stability, including a high dose of fish oil and a strong vitamin B-complex

  Some habits that help me: a structured schedule, including daily mood charts, keeping a journal, yoga (I'm serious), cardiovascular exercise, meditation, baths, massage, going out of my house and interacting with another human being at least once a day, long periods of sunshine, and, during the winter, my light box. Also, seeing my doctor and therapist frequently, seeing my family and friends several times a week, and, critically, staying sober.

  Weekly cost of my meds: around $300, one third of which is out of pocket

  My side effects last week: double vision until 2 P.M., dizziness, poor balance, headaches, nausea, digestive problems, low blood sugar, anxiety, shaking hands

  Weekly cost of therapy: $217, out of pocket

  Cost of psychiatric visits: $300 per session (at least two a month, sometimes more), only partially covered by my three forms of insurance

  Cost of my last hospitalization: $45,000 covered by insurance; $10,000 paid out of pocket

  Useful Websites

  GENERAL INFORMATION

  American Academy of Child and Adolescent Psychiatry—aacap.org

  American Psychiatric Organization—psych.org

  American Psychological Association—apa.org

  DIRECTORIES OF LINKS

  directory.google.com/Top/Health/Mental_Health/Disorders/Mood/

  Bipolar_Disorder—Google's list of websites about bipolar disorder

  dmoz.org/Health/Mental_Health/Disorders/Mood/Bipolar_Disorder

  —the Open Directory Project's bipolar disorder link list

  mentalhealth.com/dis/p20-md02.html—the Internet Mental Health site's comprehensive and helpfully organized list of links to more sites on bipolar disorder

  mhselfhelp.org—National Mental Health Consumers' Self-Help Clearinghouse site

  psycom.net/depression.central.bipolar.html—list of bipolar links

  OTHER SITES

  a-silver-lining.org—chat rooms, bulletin boards, articles, newsletter, bookstore, and links to related resources

  bipolarchild.com—based on Demitri Papolos's book The Bipolar Child, the site offers a sample IEP (individual education plan), links, a free newsletter, and a FAQ sheet

  bipolarworld.net—offers general information on bipolar, message boards, an art gallery, a place to post poetry, and an "ask the doctor" forum

  bpchildresearch.org—Juvenile Bipolar Research Foundation (JBRF) is "the first charitable foundation devoted solely to the need for further awareness, education, and research in childhood-onset bipolar disorder." It funds research into the causes, treatments, and prevention of the disease.

  bpkids.org—the website of the Child and Adolescent Bipolar Foundation (CABF), a nonprofit that gives a great deal of information to visitors about early-onset forms of the disease

  bpso.org—stands for "bipolar significant others." Offers general information and a peer-support mailing list.

  citizen.org/eletter/—sponsored by the Public Citizen's Health Research Group and the Treatment Advocacy Center, which do not accept pharmaceutical company support, this site provides up-to-date, unbiased information on medications used to treat bipolar and other psychiatric disorders.

  crazymeds.org—a private website run by someone with a mental illness, this site is incredibly helpful. It provides ongoing reviews of a large number of meds, which are written by people who actually take them. The site is informational, gives all the details of what it's like to take the meds and what they do, and gives readers a wide range of experiences from mentally ill people on meds. This is not an official site sponsored by any pharmaceutical company and does not claim to be a scientific resource.

  dbsalliance.org—Depression and Bipolar Support Alliance (DBSA) is probably the most comprehensive resource around for individuals with bipolar disorder. It includes information on signs and symptoms; help for people just diagnosed; articles on the latest research; extensive information on all the mood disorders; excellent material about how to get involved with advocacy; suggestions on becoming a peer-group leader or a grassroots organizer; where to go for online support groups and discussion boards; how to contact local DBSA chapters and other support groups in your area; tools for recovery and management; information about how to help a loved one; a bookstore; and more. This is a fantastic site for people with mood disorders, their families and friends, and anyone who wants to get involved.

  electroshock.org—The site is maintained by a psychiatrist and offers information about ECT.

  harbor-of-refuge.org—online peer support for people with bipolar and their families

  manicdepressive.org—The website of the Harvard Bipolar Research Program at Massachusetts General Hospital offers general information, as well as a useful downloadable mood chart, and has a nationwide database to help you find bipolar specialists in your area.

  mcmanweb.com—This privately run site for people with mood disorders offers chats, discussion boards, basic information, and ideas for managing your illness. The moderator is the author of Living Well with Depression and Bipolar.

  med.jhu.edu/drada/other_org.html—website of the Depression and Related Affective Disorders Association (DRADA), associated with the Department of Psychiatry at the Johns Hopkins University School of Medicine

  medscape.com/pages/editorial/resourcecenters/public/bipolardisorder /rc-bipolardisorder.ov—An enormous source of information on bipolar, this site is primarily aimed at clinicians but is definitely worth a look if you want to expand your knowledge about the scientific and clinical aspects of the disease.

  medwebplus.com/subject/Bipolar_Disorder—MedWeb does free searches of health and science information.

  mental-health-matters.com/articles/print.php?artlD= 550—A free online booklet put together by bipolar sufferer Shay Villere, this resource offers answers from someone who deals with the disorder.

  mental-health-matters.com/research/bipolar.php—an extensive source of links to information on bipolar for supporters, professionals, and individuals with bipolar

  mentalhealth.samha.gov—site maintained by the Center for Mental Health Services under the U.S. Department of Health and Human Services

  mental-health-today.com—An excellent resource dealing with many forms of mental problems, it offers information on medication (and how to get free meds), a therapist search engine, a bookstore, articles, online communities, bulletin boards and chats, tests you can take, exercises you can do, information on stigma, an e-mail-the-volunteer page, opportunities to volunteer, information for clinicians, and more.

  mentalhelp.net—A free service that offers a search engine for finding therapi
sts and a section on bipolar disorder that also provides general information on a number of bipolar topics, including symptoms and treatments, psychiatric classification information, bipolar news, and links to other Web resources.

  mhsanctuary.com/bipolar—a clearinghouse for information on bipolar disorder, as well as support groups for people who have it and their families, bulletin boards, chat rooms, mental-health-related blogs, personal stories and articles written by people with bipolar, a file of frequently asked questions, and ideas for self-help

  mhsource.com/bipolar—Part of the Mental Health InfoSource site, this Web source offers clinical treatment information, an electronic newsletter, and other materials to help consumers stay abreast of what's afoot in the clinical world. See also mhsource.com/interactive/chat.html, where you can find consumer and clinical chat rooms.

  mhsource.com/narsad/html—The website for the National Alliance for Research on Schizophrenia and Affective Disorders (NARSAD) (see Research Resources, below)

  moodgarden.org—popular support forum for people with bipolar and depression

  nami.org—Formerly the National Alliance for the Mentally Ill, this organization calls itself, and really is, "the nation's voice on mental illness," providing the most comprehensive network of support, opportunity for involvement, and information on mental illness available. The organization is a major national presence, and the website keeps visitors up to date on NAMI's advocacy efforts and how to get involved. It also has a wide range of online support and discussion groups for people with a variety of mental illnesses. The organization has more than 1,200 affiliates nationwide, and this site enables you to search for a local chapter, get legal support, and more. It also publishes the useful twice-monthly newsletter NAMI Advocate.

  nimh.nih.gov — The website for the National Institute of Mental Health (NIMH) states that its mission is "to reduce the burden of mental illness and behavioral disorders through research on mind, brain, and behavior." This is a good site to visit if you are interested in advocating for improved and expanded research on bipolar and other mental illnesses. To look at the page specifically on bipolar research and resources, go to nimh.nih.gov/publicat/ bipolarmenu.cfm.

  nmha.org — National Mental Health Association (NMHA) is a nonprofit organization dedicated to addressing many aspects of mental health and illness. It has 340 affiliates nationwide that work to improve mental health through education, research, and advocacy. The website offers general information and access to its affiliate directory.

  obad.ca/main.htm — Organization for Bipolar and Affective Disorders Society (OBAD), based in Alberta, Canada, aims to help people with a range of affective disorders, offering downloadable material on those disorders, an "ask the experts" column, and information about resources.

  oreilly.com/medical/bipolar—Part of the Patient-Centered Guides organization, which publishes a number of books and other literature on a number of disorders including bipolar disorder, this site provides support to parents of bipolar children and adolescents, offering resources such as advocacy and support groups and links to other websites. It also offers information on related conditions and symptoms, special-needs parenting and sibling issues, special education, health care and insurance, medications and complementary treatments, medical facilities, and public mental health agencies.

  patientcenters.com/bipolar—Gives links to publications, related websites, advocacy groups, material about medication and special issues related to bipolar disorder, and articles excerpted from Mitzi Waltz's book Bipolar Disorders: A Guide to Helping Children and Adolescents.

  pendulum.org—Far-reaching website that includes information on medications and complementary treatments, stress management strategies, and diagnostic criteria, as well as an online bipolar support group, writing by people with the disorder, and resources to help you get more support.

  psychcentral.com—Run by mental health professionals, the site claims to be the largest mental health social network. It offers information on a broad spectrum of mental disorders, as well as blogs, chats, quizzes, information on medication and treatments, an "ask the therapist" link, links to reports on mental illness in the news, and information about further resources.

  psycheducation.org/index/html—An educational site that offers articles on a wide range of mental health subjects, particularly all types of bipolar; a therapist search engine; an "ask the doctor" link; and information about medications and other treatments.

  psychlaws.org—The website for the Treatment Advocacy Center (TAC), a legal advocate for the improvement of mental health treatment, is an extremely helpful site that focuses on problems associated with the failure to treat people with bipolar and other severe psychiatric conditions. Much of this information is unavailable elsewhere. (See Useful Contacts for information on TAC.)

  Useful Contacts

  NAMI (formerly the National Alliance for the Mentally 111)

  Colonial Place Three

  2107 Wilson Blvd., Suite 300

  Arlington, VA 22201-3042

  703-524-7600

  Helpline: 800-950-6264

  nami.org

  See website listing for more information about this organization.

  DRADA (Depression and Related Affective Disorders Association)

  Johns Hopkins University Medical Center, Meyer 3-181

  600 N. Wolfe St.

  Baltimore, MD 21205

  410-955-4647

  med.jhu.edu/drada

  Education and support groups for people with affective disorders.

  TAC (Treatment Advocacy Center)

  3300 N. Fairfax Dr., Suite 220

  Arlington, VA 22201

  703-294-6001

  psychlaws.org

  A legal advocacy organization founded to bring attention to the failing mental illness treatment system and correct its consequences. TAC's special focus is on people with bipolar, schizophrenia, and other severe mental illnesses who are being victimized, are homeless or jailed, are at risk of suicide, or are a danger to others because they are not being treated. TAC works to reform legal systems that prevent mentally ill people from getting treatment. It is a resource for individuals trying to reform treatment laws in their own states. Its free bimonthly newsletter Catalyst can be ordered by mail or online.

  Research Resources

  Stanley Foundation Research Programs

  5430 Grosvenor Lane, Suite 200

  Bethesda, MD 20814

  301-571-0770

  stanleyresearch.org

  NARSAD (National Alliance for Research on Schizophrenia and

  Affective Disorders)

  60 Cutter Mill Rd., Suite 404

  Great Neck, NY 11021

  516-829-0091

  narsad.org

  Outside of the U.S. government, these are the two largest providers of funds for research on mental illness; the Stanley Foundation also funds brain research. Both organizations work to make up for the significant shortfall between what's provided by the federal government and what's still needed, and both welcome donations.

  Bibliography

  Akiskal, Hagop S., Juan Jose Lopez-Ibor, Mario Maj, and Norman Sartorius, eds. Bipolar Disorder. West Sussex, UK: John Wiley and Sons, Ltd., 2002.

  Akiskal, Hagop S., and Mauricio Tohen, eds. Bipolar Psychopharmacotherapy. West Sussex, UK: John Wiley and Sons, Ltd., 2006.

  Anglada, Tracy. Intense Minds: Through the Eyes of Young People with Bipolar Disorder. BC, Canada: Trafford Publishing, 2006.

  Anonymous. The Dual Disorders Recovery Book. Center City, MN: Hazelden Publishing, 1993.

  Atkins, Charles. The Bipolar Disorder Answer Book. Naperville, IL: Sourcebooks, 2007.

  Aubrey, Jean-Michel, Francoise Ferrero, Nicolas Schaad, and Mark Bauer. Pharmacotherapy of Bipolar Disorders. Hoboken, NJ: Wiley, 2007.

  Basco, Monica Ramirez. The Bipolar Workbook: Tools for Controlling Your Mood Swings. New York: Guilford Press, 2005.

  Behrman, Andy. Electroboy: A Memoir of Mania.
New York: Random House, 2003.

  Bennett, Bob. Mental Illness: A Guide to Recovery. BC, Canada: Trafford Publishing, 2006.

  Bentall, Richard P. Madness Explained. New York: Penguin, 2005.

  Birmaker, Boris M. New Hope for Children and Teens with Bipolar Disorder. New York: Three Rivers Press, 2004.

  Bloch, Jon P., and Jeffrey Naser. The Everything Health Guide to Adult Bipolar Disorder: Reassuring Advice to Help You Cope. Cincinnati: Adams Media Corp., 2006.

  Burgess, Wes. The Bipolar Handbook. New York: Penguin, 2006.

  Carter, Rosalynn. Helping Someone with Mental Illness: A Compassionate Guide for Family, Friends, and Caregivers. New York: Three Rivers Press, 1999.

  Castle, Lara R. Finding Your Bipolar Muse: How to Master Depressive Droughts and Manic Floods and Access Your Creative Power. New York: Marlowe and Company, 2006.

  Castle, Lara R., and Peter C. Whybrow. Bipolar Disorder Demystified: Mastering the Tightrope of Manic Depression. New York: Marlowe and Company, 2003.

  Corrigan, Patrick W., ed. On the Stigma of Mental Illness. Washington, D.C.: American Psychological Association, 2005.

  Corrigan, Patrick, and Robert K. Lundin. Don't Call Me Nuts!: Coping with the Stigma of mental Illness. Tinley Park, IL: Recovery Press, 2001.

  Daley, Dennis C., and Roger F. Haskett. Understanding Bipolar Disorder and Addiction. Center City, MN: Hazelden Publishing, 2003.

  Dally, Peter. The Marriage of Heaven and Hell: Manic Depression and the Life of Virginia Woolf. New York: St. Martin's Press, 1999.

  DelBello, Melissa P., and Barbara Geller, eds. Bipolar Disorder in Children and Early Adolescence. New York: Guilford Press, 2003.

  Fast, Julia, and John Preston. Loving Someone with Bipolar Disorder. Oakland, CA: New Harbinger Books, 2004.

  ——. Take Charge of Bipolar Disorder: A Four-Step Plan for You and Your Loved Ones to Manage the Illness and Create Lasting Stability. New York: Wellness Central, 2002.

  Fawcat, Jan, Bernard Golden, Nancy Rosenfeld, and Frederick K. Goodwin. New Hope for People with Bipolar Disorder: Your Friendly, Authoritative Guide to the Latest in Traditional and Complementary Solutions. 2nd ed. New York: Three Rivers Press, 2007.

 

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