November 1999

The Legislature, Floyd, and Funding

Hurricane Floyd devastated eastern North Carolina in September. The effects of that devastation on the state are just now being fully recognized. The commitment to rebuild the eastern part of the state will require hundreds of millions of dollars.

Speculation is high that a special session of the General Assembly will be called to address the situation. Any new funding commitments are likely to be targeted to the East and it is unlikely that any significant new funding will go to the public mental health system.

It will be critical, however, to ensure that funds that are committed to the redevelopment in eastern North Carolina include funds to re-build the mental health service delivery system. Mental health centers and other service facilities sustained considerable damage.

Many vicitms of the flood were individuals with disabilities. Shelters reported that those most difficult to serve were those who were homeless and mentally ill, many who never had received services from the mental health system. Concerns are rising about new mental health needs as a result of post traumatic stress, depression, and anxiety disorder as people struggle to cope. In her visit to eastern North Carolina, Tipper Gore called for the mental health needs of the survivors to be addressed. We must make sure our state leaders heed her call.

A special "thank you" to all NAMI North Carolina members who took the time to respond to our Program Survey, which was mailed as part of the July/August issue of Clippings. Feedback from members is certainly appreciated.

The survey responses are being reviewed and will be used to determine how NAMI North Carolina can best meet membership needs through programming in the future.

Thanks again!

NAMI affiliates are now in the midst of our year 2000 membership renewal process.

Please renew your affiliate membership as soon as possible.

We apologize for publishing the wrong date of Client Rights Conference in the calendar portion of October’s issue of Clippings.

The conference, sponsored by the Division of MH/DD/SAS, is scheduled for November 15 and 16 at the Hilton North Raleigh.

Contact Jacqueline Carter at Wake AHEC, (919)350-8547 for conference registration information.

NAMI North Carolina’s Board of Directors has set outreach to minority communities as a top-priority goal for the coming months.

To help plan and implement outreach efforts, the state office is looking for NAMI members from African American, Hispanic, Asian and other minority communities throughout the state. Through telephone and pencil-and-paper surveys, these members will be asked to identify special needs shared by minorities and to suggest ways NAMI North Carolina can tailor its services to fill those needs more effectively.

If you are a member of a minority group and are willing to share your insights and ideas to help NAMI North Carolina with this outreach, please call the Helpline at (800) 451-9682.

For those of us with an interest in obtaining adequate care, at the very least, for people with severe mental illnesses it is the best of times and the worst of times. It is the best of times because there is an ever expanding body of research which clearly shows the biological nature of these illnesses and points to new medicines and treatments with proven efficacy. It is the worst of times because the public system in North Carolina seems caught on a traffic circle with exit roads reflecting particular interests and points of view. Efforts to find the right road for the 21st century have moved in fits and starts and the goal of a comprehensive state system of care remains elusive.

There is a study, authorized by the Legislature and coordinated through the state auditor’s office, to examine the structure and functioning of the state hospitals, the area programs, and the Division of MH/DD/SAS. Because of its comprehensiveness and the fact that the Legislature and State Auditor’s office back it, it has taken precedence over the work of the Division’s Design Team. The Design Team, while motivated, well-meaning, and representative of all stakeholders, will likely be placed in the role of responding to the Auditor’s report. The Division of Medical Assistance has slashed Medicaid rates, creating serious fiscal crises within many area programs with a resultant reduction in services. While the stated reason is to make sure rates reflect actual costs, one has to wonder whether the costs savings will be shifted to other special interests the Governor has. Resources are shuffled between the state hospitals and the Division in order to plug a hole here and cross your fingers that a leak doesn’t pop up there. The usual turf battles rage and the beat goes on.

But there are glimmers of hope. The Mental Health Study Commission of the legislature is preparing to take an active role and the Auditor’s efforts may yield significant information and point a direction. The underlying basis for all these efforts must be constantly emphasized; this is about North Carolinians who have a chronic and devastating illness, but who can move toward recovery with proper treatment and support services. To withhold that treatment may be tantamount to malpractice. For NAMI NC, our particular interest is constant, does not change and remains to protect and advance treatments that will enable those with severe mental illnesses to "get a life."

Many of our NAMI North Carolina affiliates held special activities during Mental Illness Awareness Week, most including programs closing with candlelight vigils. The following are the activities reported to the state office. Please call and inform us of your affiliate activities during this year’s MIA Week.

NAMI Four Seasons worked with several other local organizations to organize and publicize its candlelight vigil which was held at the Sixth Avenue West Clubhouse in Hendersonville. Mayor Fred Niehoff welcomed the group and N.C. Senator Robert Carpenter of Franklin was one of the speakers at the vigil. Gordon MacKenzie also spoke about his struggle with mental illness and how much he had been helped at the clubhouse in Hendersonville.

NAMI Moore County’s candlelight vigil, held at the Village Chapel in Pinehurst, included speakers Cari Dreher, Devault Clevenger and Dr. David Ruck. The presentations were followed by the candle lighting ceremony on the chapel lawn. NAMI Moore County also offered a viewing of a videotape of Dr. Fred Frese’s keynote speech from NAMI’s Convention in July. Dr. Frese, a NAMI Board member, shared his personal story of schizophrenia with poignancy and a great sense of humor.

NAMI Wake County’s MIAW activities started with a candlelight vigil on the State Capitol grounds. Speakers included Carol Helmlinger of SPAN (Suicide Prevention Advocacy Network), who brought life keeper memory quilts; Wyndy Hoover of the Foundation of Hope; Rose Van Sickle of Recovery, Inc.; and NAMI Wake County members Stephanie Gilmore and Beth Greb. NAMI Wake County provided informational displays at several Wake County libraries and manned a display booth at the Mental Health Association’s "Screening for Depression" day exhibit. NAMI Wake County members ended the week by joining together in the "Walk for Hope," the Foundation of Hope’s fund raiser for mental illness research.

NAMI Orange County activities aimed to increase awareness of mental illness among faith communities and to encourage congregations to support persons with mental illness and their families. A team of volunteers personally contacted churches, offering a fact sheet of information about mental illness and community resources to use as a worship bulletin insert. 10,000 fact sheet inserts were delivered to 65 churches in Orange and Chatham counties including a number of African American and rural congregations. Gove Elder, chair for religious outreach, headed up this effort, assisted by affiliate members and Family-to-Family participants. Elder reports that this was a excellent way for Family-to-Family participants to be involved in NAMI Orange County’s activity, and they felt affirmed by their involvement.

NAMI Guilford County’s MIA Week activities actually began in mid-September with educational displays at two Greensboro bookstores and at the Greensboro Main Library. Maggie Turner, a parish nurse, and Beth Melcher spoke to those assembled at NAMI Guilford County’s vigil, and talented people from The Guilford Center Program provided entertainment.

NAMI Western Carolina members were excited that their "Walk a Mile in our Shoes" garnered coverage from the local TV station and newspaper. Co-sponsoring organizations provided T-shirts to the participants. NAMI Western Carolina presented its affiliate awards at a mental health fair following this successful event. Affiliate leaders were pleased with the large turn-out considering the rainy day. Members from several other NAMI affiliates, including NAMI Four Seasons and NAMI High Country, participated in NAMI Western Carolina’s walk.

"This is the story of an extraordinary boy with a brilliant mind, a heart of gold and a tortured soul....It is the story of an illness, a fight to live and a race against death."

From the day he was born, Nick Traina was his mother’s joy. By nineteen he was dead. Danielle Steel describes the heartrending story of the son she lost and the lessons she learned during his courageous battle against darkness.

Sharing painful, tender memories, author Steel brings us a haunting duet between a singular young man and the mother and siblings who loved and respected him, and the harrowing portrait of a masked killer: "manic depression," which afflicts between two and three million Americans.

Her son, "Nicky" rocketed through life like a shooting star. Signs of his illness were subtle, often paradoxical...and he always seemed to march to a different drummer. When finally diagnosed and treated, it bought time, but too little, too late. Danielle Steel’s tribute to her son is a gift of life, hope, healing and understanding, and perhaps, a tribute to us all...

In the prologue, Ms. Steel writes, "This will not be an easy book to write and as hard as it may be, it’s worth doing...if it helps someone. It is hard to encapsulate a being, a very special being, a soul, a smile, a boy, a huge talent, an enormous heart, a child, a man, in however many pages, yet I must try, for him, for myself and for you."

Ms. Steel idealizes: "If I had only one wish, it would be that my son, Nicky, had never suffered from manic-depression (or bipolar disease). Though I have written this book to remember and honor Nicky, there is yet another purpose...I want to share the story, the pain, the conflict, the love and what I learned in living with it through my son. I want it not only to be a tender memory for me...but a gift for others. There is much to learn, not only about one life, but about the manic-depressive..."

I, as reviewer of the book, too want to share Danielle Steel’s story: her pain, her courage and everlasting faith in her son, her respect for his illness and what I learned about the illness from her book: The blessed gift of endurance and inspiration with a lasting tribute to those who have suffered. The strength and will to march courageously and softly to your own drummer, and you’ve beat the band!

In September, NAMI Rowan was formed at a workshop in Salisbury. Welcome to the Family of NAMI North Carolina! Meetings will be held at the Rowan County Library on the second Tuesday of the month. Those interested in joining NAMI Rowan can call Sarah Boyd at (704)636-2780.

NAMI Union County is restructuring. Paul and Marcia Garatt, Family-to-Family teachers from Cabarrus County, generously traveled twice a week for twelve weeks to Union County to put on two courses simultaneously this fall. The Garatts, along with several NAMI Union County members, also attended an affiliate restructuring workshop in October.

Anyone interested in technical assistance or a workshop for affiliate development can call Beth Greb at (919)788-0801 or 1(800)451-9682.

The weekend of September 18-19, NAMI sent four of its regional campaign directors to Raleigh for an Affiliate Development Workshop presented by NAMI North Carolina’s own Beth Melcher and Beth Greb. Seven state affiliate leaders also attended, representing Colorado, Florida, Illinois, New Jersey, New York, Ohio, and Tennessee.

The Affiliate Tool Kit, which is the basis for this training, is now available through the NAMI internet website. The workshop is presented along with the Tool Kit as a vehicle for organizing affiliates and explaining the services available through NAMI North Carolina to help affiliates grow and prosper. Follow-up consultation with affiliate leaders is included in the Affiliate Development Program.

NAMI North Carolina is proud to be a leader in the field of affiliate development. We are flattered that NAMI has honored us by sending so many leaders to Raleigh to see what we are doing.

Union County and Rowan County are the latest affiliates in North Carolina to host the Affiliate Development Workshop. The Affiliate Tool Kit is given to affiliates which have been represented at these workshops as an additional tool for expansion and organization. NAMI North Carolina is dedicated to ongoing support for affiliates. We encourage the few affiliates which have not yet taken advantage of this program to contact the state office.

Mental Illness Awareness Week is a time when our public speakers are most in evidence. But Mental Illness exists year round, as does the need to get the word out about NAMI.

For those interested in public speaking, there is a great tool created by NAMI and available through NAMI North Carolina, The Science and Treatment Kit. The kit includes a short video tape and outlines for various topics. There are lots of statistics that are useful for speakers. Along with the kit, you will receive handouts and membership cards.

The Science and Treatment Kit can help even the inexperienced put on a successful presentation. Call NAMI North Carolina to order your kit today.

Recognize a loved one by

giving them an honor gift or memorial

at NAMI North Carolina.

If you need more information, call

1-800-451-9682.

Many times volunteers and donors ask us what we wished we had to do our jobs better. Of course, an answer to such a question could run the gamut from purely selfish personal desires to very expensive capital needs. After pondering this question, we decided that the wishes would be for items that would help NAMI North Carolina provide better educational programs and deliver more information to the public. With this, NAMI North Carolina could provide additional support programs and could encourage greater advocacy—all part of our mission.

With the Fall Institute, which is considered one of our strongest education programs, we have determined that we could save money by not having to rent certain pieces of equipment. Additionally, by having this equipment in our possession, we could use at other times. Furthermore, we could utilize the items when we are asked to display at other organization’s statewide conferences and when we speak to other groups. Hence, helping us to get our message out and to help others.

Below are our much-needed yet unbudgeted, items. We hope that you will keep the items and associated costs in mind when you make your next contribution to NAMI North Carolina.

     Computer server $1500

     Computer $1000

     Mobile display board $ 500

     Slide projector $ 450

     Projection screen $ 250

    35 mm camera $ 150

Neurontin (chemical name, gabapentin) by Parke-Davis Pharmaceuticals, was released in 1993. It is one of the latest anti-seizure medications now being used as a mood regulator in Bipolar Disorder.

Lithium has long been the mainstay of treatment of Bipolar. Depakote (valproate) and Tegretol (carbamazepine) have stepped in to help the 60% of patients who do not respond well to lithium. Neurontin is exciting because the success rate is higher than the success rate of these medications.

Neurontin has been successful in controlling rapid cycling and mixed bipolar states in people who have not received adequate relief from Tegretol and/or Depakote. It also appears that Neurontin has significantly more anti-anxiety and anti-agitation potency then either Tegretol or Depakote. One of the benefits of Neurontin is that it produces no negative drug interactions with lithium, Tegretol or Depakote. As it has a short half-life of about six hours, it must be taken three or four times a day. While some people notice the anti-manic and anti-depressant effects within a week or two, others have to take a therapeutic amount of Neurontin for up to a month before being aware of a significant amount of improvement.

Some side-effects in people using Neurontin are sleepiness, dizziness, unsteadiness, blurred vision, tremor and double vision. Side-effects are most noticeable the few days after an increase in dose and then usually fade. As with all drugs which have the ability to reduce depression, Neurontin may induce mania in a small number of people with Bipolar Disorder.

Studies of Neurontin in people with mood disorder are small and of a short period of time. No studies have been made on the effects of long-term usage. It is not known if people who initially do well on Neurontin continue to do so after many years of treatment. Neurontin has only been approved (as an anti-seizure medication) for use in persons over the age of twelve.

Because this medication has only recently been released, it is produced in brand-name only, making it relatively expensive.

The above information was excerpted from Depression Central on the internet. The address is www.psycom.net/depression.central. This internet article is provided with the disclaimer that, "The diagnosis and treatment of depression and other psychiatric disorders requires trained medical professionals. The information provided is to be used for educational purposes only. It should NOT be used as a substitute for seeking professional care for diagnosis and treatment."

The University of North Carolina at Chapel Hill has won a $42.1 million federal contract to determine the effectiveness and safety of a new class of anti-psychotic drugs for treating people with schizophrenia and those with psychotic and disruptive behaviors associated with Alzheimer’s disease.

The contract, announced by the National Institute of Mental Health (NIMH), is the largest ever awarded by the federal agency. It places the university in charge of a multicenter, five-year effort aimed at definitively determining the value of the new class of atypical anti-psychotic drugs represented by clozapine, risperidone, olanzapine and quetiapine.

"This research will make an unparalleled contribution to defining the clinical role of the new anti-psychotics," said Dr. Steven E. Hyman, director of the NIMH. "It will provide reliable data on the efficacy of these atypical medications in relieving psychotic symptoms of schizophrenia and Alzheimer’s disease, and will gauge their effectiveness in terms of broader outcomes—such as adherence to treatment, ability to work, social functioning and quality of life."

Now on the market, these drugs are proven effective in carefully controlled clinical studies typically co-sponsored by drug companies. The drugs differ from other anti-psychotic agents in that they act on multiple cell receptor sites in the brain, including receptors for dopamine, serotonin and nonrepinephrine, instead of just dopamine.

However, the new drugs cost more than 10 times that of the old medications and questions remain about their effectiveness in the real world and whether they are worth the higher price.

"The NIMH wants to get definitive and objective results in terms of their effectiveness, results of significant magnitude in real world settings that can inform public health policy," said Dr. Jeffrey A. Lieberman, professor psychiatry, pharmacology and radiology at UNC-CH School of Medicine.

Lieberman and Dr. C. E. Davis, professor and chair of biostatistics at the UNC-CH School of Public Health, are the project’s co-principal investigators. Over the next five years, they and their study colleagues will enroll 1,000 patients with schizophrenia and 400 to 500 Alzheimer’s patients. The terms of the NIMH award include an option for expansion studies and a five-year extension.

One-stop shopping in the Department of Health and Human Services is available through the Office of Citizen Services, which allows citizens to travel through the maze of the human service delivery system by answering questions, cutting through red tape and serving as a clearinghouse for information relating to the services to which the people of the state are entitled.

The Office of Citizen Services’ toll-free Information and Referral Service/CARE-LINE is staffed with specialists who offer information and referral on human services within the Department of Health and Human Services and non-profits across the state. The office also handles complaints and inquiries related to department services through an Ombudsman Program. A bilingual specialist is available for Spanish-speaking callers. Office hours are Monday through Friday, 8 a.m.-5 p.m., except holidays.

In North Carolina, call 1-800-662-7030 (TTY/Voice/Spanish), or 919-733-4261 (voice), or 919-733-4851 (TTY).

November 10 Managed Care Regular Work Group Meeting, NC Council of Community Mental Health, Developmental Disabilities and Substance Abuse Programs, 10 a.m.-2 p.m., Raleigh. For information, call (919) 755-0680.

November 12-14 Family-to-Family Education Training for persons interested in teaching Family-to-Family in their communities. Call Beth Greb at (800)451-9682 for more information.

November 14 Wambui Bahati’s Balancing Act performance at 3 p.m. in Concord at St. James Lutheran Church, 104 Union Street. Tickets are $5 in advance and $7 at the door. Contact Paul Garatt of NAMI Cabarrus for more information, at (704)788-3797.

November 15-16 Division of MH/DD/SAS Client Rights Conference, People First: Protecting Rights While Managing Risk, at the Hilton North Raleigh. For registration information, contact Jacqueline Carter at Wake AHEC,

(919)350-8547.

November 18 Family forum panel with staff from the Durham Center and a talk by Wambui Bahati dealing with her mental illness at 8 p.m. at the Durham Public Library. Call Barbara Smith at (919) 493-4828 for more details.

December 8 Managed Care Regular Work Group Meeting, NC Council of Community Mental Health, Developmental Disabilities and Substance Abuse Programs, 10 a.m.-2 p.m., Raleigh. For information, call (919) 755-0680.

February 16-18 15th Annual Vocational Alternatives Conference in Greensboro.

May 12-13, 2000 NAMI North Carolina’s Spring Conference in Winston-Salem. Reserve the date.