June 2000

NAMI North Carolina has started a new email service, Heard in the Halls, with the latest information about what is happening at the General Assembly and in state government.

To subscribe, send your email address to bmelcher@naminc.org

Conference Offers Many Educational Opportunities

NAMI North Carolina celebrated its 17th annual Spring Conference with a program that was varied and rich and this reflects the wide range of issues of concern to our members. But a common theme could be discerned and that was reflected in the title of the conference, Hope for the New Millennium. There is hope, and life has improved for some of our families. So this is a column about a glass that is half full and which must become full for the rest of us.

In that half-full glass, we must start with the new atypical medicines that have enabled some of those with mental illness to live a more stable life in their communities and out of the hospital. But not for many. In some communities there are Assertive Community Treatment Teams to respond quickly to prevent a crisis from escalating. But not for many. In some communities there are rehabilitation programs and clubhouses. But not for many. In some places there are programs to help people go to meaningful work. But not for many. In some communities there are even a few decent places to live. But not for many. So there are elements of good programs and practices all across our state, but not for many.

The media have performed a tremendous public service by shining their spotlight on glaring defects in the system. It has raised the level of awareness in the general public as well as with our governmental leaders.

There will be a Blue Ribbon Commission established by the legislature to come forward with a comprehensive plan and there is a dedicated group of legislators and some other elected officials who are willing to help. So there is beginning to be a coalescing of ideas and efforts and a realization that the time is now. The opportunity is here and we must take advantage of it. As families we know very well what works, what the needs are and where the holes are.

Our challenge is to enable those with severe mental illnesses to share in the half-full glass until it becomes a reality and full for everyone. These are exciting and frightening times because the very nature of the system we have known will be changing, but what an opportunity to help shape the future as we believe it should be. That is the reason for our hope.

NAMI North Carolina 2000 Awards Presented

Congratulations to NAMI North Carolina’s 2000 award winners, who were honored at the recent Spring Conference:

Media Award—-Debbie Cenziper, writer, and Gayle Shomer, photographer, for the outstanding series, Broken Promises, which featured problems in North Carolina's mental health system and forced the beginnings of change.

Professional of the Year Award—-George Muse, PhD, assistant area director of Piedmont Behavioral Healthcare, for his exceptional support of the Family-to-Family program and his dedication to community mental health services for 20 years.

President's Award—-Wambui Bahati of NAMI Guilford County became the first recipient of this award, which was established to recognize individuals who have persevered in their battle against mental illness and made a positive difference in the lives of others as well as their own. Wambui has opened many minds with her upbeat musical, Balancing Act.

Advocate of the Year—-Jim Shaw of NAMI Union County for providing great leadership in the Family-to-Family program in his area in addition to working with the clergy and supporting the activities of his affiliate on a regular basis.

Lifetime Achievement—-Elaine Purpel for 17 years of service which began when she co-founded the organization with Marcia Garatt and served as first president of the Board of Directors.

Elaine has continued her dedication over the years by serving more than once as president of her local affiliate, by serving a term on the national NAMI Board of Directors, and by successfully promoting Wambui Bahati's Balancing Act in 10 North Carolina communities. In addition, Elaine has been a friend to, and has supported, countless families as they have struggled to cope with mental illness.

Mood disorders are currently classified as major depression, dysthymia (chronic low-grade depression), and bipolar or manic-depressive disorders.

Dr. Hagop S. Akiskal, Professor of Psychiatry and Director of the International Mood Center at the University of California at San Diego, contends that much of what DSM-IV labels as depression with histrionic, narcissistic, or borderline personality is better described as "soft bipolar disorders." New data indicates that 50% of all depressions are bipolar at some level. According to Dr. Akiskal, we need to remember that these classifications are actually points on a spectrum rather than discrete disorders.

1. Bipolar I. The distinguishing feature of this disorder is mania, often with psychotic symptoms.

2. Bipolar I ½. This disorder consists of frequent depressions punctuated by hypomanic (a milder form of mania) episodes lasting a few weeks, without psychosis or serious social disruption.

3. Bipolar II. The hallmark of this disorder is recurrent exhausted (anergic) depression, with occasional hypomania that begins and ends abruptly. The patient may go to sleep depressed, but be hypomanic in the early morning. These persons exhibit what are commonly called "classic" bipolar symptoms. They may need less sleep, be hypersexual, and become overly involved in new projects.

4. Bipolar II ½. This is the "darker," less stable form of Bipolar II. Persons with this disorder may suffer from depression and irritable hypomania. They may have social anxiety and panic attacks, and be mislabeled as having borderline personality disorder.

5. Bipolar III. Patients with this disorder may become hypomanic, usually for brief periods, when treated with antidepressant medications. In general they are chronically depressed, but often have a family history of bipolar disorder.

6. Bipolar III ½. In patients with this disorder, periods of excitement and depression are so closely associated with drug and alcohol abuse that it is difficult to determine the cause of their mood changes. Often there is a family history of bipolar disorder. This gives way to reasoning that alcohol and stimulant abuse may be a form of self-treatment.

7. Bipolar IV. This condition is best described as depression in a person with a manic temperament. Antidepressant treatment is not effective. The depression is characterized by lack of energy. Eventually, the patient develops an agitated or excited depression with restlessness, racing thoughts, or intense sexual excitement.

Many of these conditions have formerly been described as unipolar depression, borderline personality disorder, drug abuse or even "sociopathy." Childhood hyperactivity may also be related to the soft bipolar disorders, since it often accompanies or precedes bipolar disorder in children and adolescents.

The underlying nature of bipolar disorder may suggest the need to prescribe mood stabilizers (lithium or anticonvulsants) as well as antidepressants, or often, to discontinue antidepressants.

This article is abridged due to length and complexity. For a complete copy of "Temperaments and Mood Disorders" by Hagop S. Akiskal, MD found in the February 2000 Harvard Mental Health Letter, contact Gloria Harrison at the NAMI North Carolina state office.

Consumers of mental health medications are especially susceptible to heat stroke and heat exhaustion. These conditions are serious and can lead to collapse or even death.

The following list is not complete. It is only meant to indicate some of the categories of psychiatric medications which may cause heat problems. Some of the medications that disable a person’s internal biological thermostat are:

Anti-psychotics: both the new, such as Zyprexa and Risperdol, and the old, such as Haldol and Stelazine.

Antiparkinsonians: such as Cogentin, which is sometimes used to combat side-effects of anti-psychotic medications.

Antidepressants: especially the old tricyclics such as Elavil and Tofranil. Be warned, however, that the newer antidepressants, such as Prozac and Zoloft, and others can also cause heat-related distress.

Antihistamines: such as Benadryl, which is sometimes given to consumers as a sleep aid, or to help control nervous symptoms.

(Mood Stabilizers: Levels of lithium and other mood stabilizers may be affected by excessive sweating).

Social isolation and lack of air conditioning can increase the risk of heat related illness. Use of alcohol or illegal drugs can be the final blow.

It is vital that a person drink plenty of liquids. However, because medications can alter the body’s natural cooling processes such as sweating, drinking adequate liquids may not be enough.

It is important to find somewhere to cool off for major portions of the day. Cool compresses or sitting in a tub of water can cool your body on a hot night. Also, ask a relative or buddy to "check in" with you if you sleep in an apartment or house without air conditioning.

Persons with schizophrenia or schizo-affective disorder may not feel the heat in the same way as people without these illnesses. Rely on the air temperature readings and wear loose, light colored clothing. Help others you see who may not be aware of the hot weather, and who are wearing inappropriately heavy clothing.

Talk to your doctor or to a pharmacist about the side effects of your particular medications. Remember that other medications like high blood pressure medication and over the counter decongestants (as well as numerous other medications) can add to the problem.

• Early symptoms: Dizziness, fatigue, muscle cramps, nausea, profuse sweating, thirst

and weakness.

• Later symptoms of heat-exhaustion: Cool, moist skin, dilated pupils, headache, pale skin, irrational behavior, nausea and vomiting, unconsciousness.
• Symptoms of heatstroke: Dry, hot, and red skin, fever above 102^oF, dark urine, confusion, rapid, shallow breathing, weak pulse, seizures, small pupils and unconsciousness.

• DO NOT underestimate the seriousness of heat illness, especially if the victim is a child, is elderly, or is injured.
• DO NOT give the victim medications that are used to treat fever (such as aspirin). They will not help, and they may be harmful.
• DO NOT give the victim salt tablets.
• DO NOT overlook possible complications resulting from a victim's other medical problems (such as high blood pressure).
• DO NOT give the victim liquids that contain alcohol or caffeine. They will interfere with the body's ability to control its internal temperature.
• DO NOT give the victim anything by mouth (not even salted drinks), if heatstroke is suspected.

When interviewed for this article, John and Mary Lane Travis tried to deflect interest in themselves. They argued that a long list of others could be interviewed before them, others who are much more active than they are today.

They are proud of the members of their extended NAMI Western Carolina Family, of which they have been a part since August, 1985. They joined their new family because "We knew we had to be associated with it. It was exactly designed for us," says John. "It's our family," made up of "incredible, extraordinary people," remarks Mary Lane.

Both the Travises have been officers most of their years in the affiliate, but "you have to step aside so that other people can learn," says Mary Lane. If you don't, "Where is the stimulus" for others to get involved, asks John.

The Travises may not be as active in their affiliate as they once were, but their advocacy has not stopped. NAMI was a life-changing experience for them, because "we had never been advocates for anything before."

With other members, and with the Mental Health Association and the Blue Ridge Area Program, they were involved in locating a site for and writing a grant that resulted in the establishment of Riverview Group Home. They also were editors of the first newsletters for their affiliate.

Today, John is still advocating for housing and employment for people who have mental illness. "I have a message. The two most critical things are, housing and employment. If a person has a job, it makes them feel normal. It's tragic when no one is pulling for them."

As a contact person, Mary Lane helps families who are new to the mental health care system. Her husband says that she acts like "a magnet," to draw people to the affiliate and, "she holds people together. She has helped hold the group together." Mary Lane says that she "loves" being a phone contact. "It is my favorite thing. That's the thing I would do the longest."

She takes her job with her even when she leaves home. "If you open up to people on the street, they will open up to you. It's not like you are alone, really." Mary's message and John's message are really the same. Wherever they are, they reach out to make a difference.

"If a person has a job, it makes them feel normal." It is tragic when "no one is pulling for them. Be a friend, act it out." One of the most rewarding experiences for the Travises is the friendships they made with others, besides their own relative, who have mental illnesses. John recommends this for all members. He says not enough of us have had this experience outside our own families.

by Paul Bamford

What would you do if you were a tourist and had stopped to admire a particularly beautiful mountain, and a Park Ranger mentioned to you that that mountain used to be somewhere else? That a group of folks had banded together to move it … Wouldn’t you want to know their names?

We at NAMI North Carolina are pleased to publish, once each year, an Honor Roll of our contributors. These are members (and some non-members, too) who make a financial contribution above their regular membership dues. The Honor Roll appears in the July/August edition of Clippings.

That means that this is the last opportunity to remind you of your chance to be on the Honor Roll for 1999-2000. The contributions must be received during this fiscal year – i.e., by June 30 – in order to be recognized in this way. We ask that you strive for this Honor, by sending us a check!

In a way, of course, we’re not asking that you make a contribution in order to have your name on our Honor Roll. We need your contribution to sustain the important work of NAMI North Carolina, and to continue to expand it. Clippings readers already know about the education, support, and advocacy, which your contributions make possible: Family-to-Family education and support groups; our Young Families program; the Helpline; the conferences; our advocacy efforts with government at all levels; Clippings itself!

So it’s not that a slot on the Honor Roll is for sale. What we’re honoring is your commitment, your tangible support for the mission and the programs all of us value so highly. They are what matters. They are what will move our mountain.

The Honor Roll is our chance to celebrate together that we all believe in the mission and programs, and are working together to achieve them. We’re moving a mountain together, and just giving the tourists our names.

I Vote, I Count 2000 is a national, non- partisan campaign for voter registration and education being sponsored by the NAMI national office. It was pilot-tested in the early primary-season states of Iowa and New Hampshire, where it generated considerable media attention. The campaign is designed to:

• focus national, state and local attention on the need for a recovery-based mental illness system;
• deliver NAMI’s key messages—-mental illnesses are biologically based brain disorders, treatment works if you can get it, and discrimination is wrong;
• strengthen NAMI’s position as the nation’s voice on mental illness among elected officials and those running for office; and
• have candidates for national, state and local offices speak out on NAMI’s issues and adopt our messages.

Following the pilot test, NAMI has developed an I Vote, I Count 2000 Tool Kit, which includes materials and plans for voter education workshops, building a database of voters, preparing a master calendar, developing coalitions with other key interest groups, working with the media, and holding rallies. The Tool Kit includes a write-up of the New Hampshire project.

The organizer of the New Hampshire project, Mike Fitzpatrick, has become one of the four NAMI regional directors, and is available to help other states and localities with similar efforts. Mike can be reached at (207) 353-9311, or by email at mfitznami@aol.com. The NAMI North Carolina office has a copy of the Tool Kit, and excerpts can be obtained by calling Paul Bamford at (919) 788-0801, or (800) 451-9682.

June 14-18

NAMI Annual Convention in San Diego, CA.

June 20

Coalition 2001 Rally Day, at the North Carolina Legislature. Call NAMI North Carolina state office at (800) 451-9682 for details.

July 2-5

2000 Autism Society of America National Conference, Atlanta, GA. For information, call 1 (888) 684-4630, toll-free.

July 14-16

Family-to-Family Education Course Teacher Training, Raleigh.