NAMI-Blue Ridge Family Alliance

MEETING SCHEDULE

March 2 Support Group Meeting

March 16 "Substance Abuse/Dual Diagnosis Issues"

Joel Hamilton, director of Region Ten’s Dual Recovery Center, along with Andrew Fry, program manager, will discuss innovative methods used in treating mentally ill clients who also have substance abuse problems. Be sure to make this meeting!

(April’s speaker meeting will be on the first Thursday.)

Joan is a local psychotherapist with strong ties to our group. Our members report that she is always helpful and informative. Come one, come all!

Val Marsh, Executive Director of NAMI Virginia, will travel from Richmond to give us a "progress report." Val is an outstanding leader, an effective advocate, and a marvelous speaker. Caitlin Wright will also be here to answer our questions. Join us!

SUMMER SCHEDULE

During the months of June, July, and August, the Blue Ridge Family Alliance will meet as a support group on the first and third Thursdays of the month. Speaker meetings will resume on September 21.

Please save this meeting schedule for
future reference. We hope to see you there.

President’s Message

Dear Friends,

We want to recognize the dedication of those people who have served for so many years on the Board and have now decided to step down: Susan Garrett, Virginia Grinaker, and Ruth Orfe. We are announcing two additions to the Board, as well: Donna Loney, an employee of Region Ten, and Ruth Mawyer, who works as a psychiatric nurse at UVA.

Donna Loney has also accepted the responsibilities of the president's job. The following is a message from Donna:

"I feel right now that there is a great deal to learn. I've not done anything like this before and will need the support of all the members to help me navigate. I'm glad I have the opportunity to serve on the Board. I’ve wanted to do something to help ever since my daughter was diagnosed with a brain disorder three years ago and I received so much support from this organization. I look forward to growing into the president’s job."

Duplicate Funding

We hear from advocates in New Hampshire and Maine that the only way to build the community system is through duplicate funding during downsizing. Caitlin Wright, of NAMI-Virginia, explains duplicate funding as follows:

"To serve more people in the community we must first

expand the capacity of the community system to be able to care for the folks preparing to come out of the hospitals. The Community Services Boards are overloaded already and CANNOT do a good job with more people, unless we fund more staff and services. At the same time, we must continue to fund the hospitals to care for people WHILE services are being developed for them in the community. We cannot put them in the community and THEN develop the services they need. So for a year we need double funding: some in the community, some in the hospitals."

Advocates in New Hampshire, which has one of the best mental health systems in the country, have learned that money not reinvested is forever lost. Virginia has studied this issue; there are people serving us in Richmond who know this is right. It is our job as family members to help them spend our money wisely now, and create a system of care that works.

Julie Curry and Donna Loney

World Wide Web

(Monticello Avenue site)
http://avenue.org/brfa/

Established 1986
501 ( c ) 3

Have you read?

Telling is Risky Business -- Mental Health Consumers Confront Stigma

by Dr. Otto F. Wahl

Individuals with serious mental illnesses have a double burden. Not only must they cope with disabling disorders, but they must also contend with negative attitudes of the public towards these disorders. To truly understand the extent of the stigma, we need to hear from consumers themselves. Telling is Risky Business is the first book to examine what these people have to say about their own experiences of stigma.

The center of this book is a nation-wide survey in which mental health consumer

consumers across the United States were asked, both through questionnaires and interviews, to tell about their experience with stigma and discrimination.

The book ends with suggestions for strategies and coping, and an invaluable section on resources available for fighting stigma is also provided. Contact Rutgers University Press, 100 Joyce Kilmer Avenue, Piscataway, NJ 08854 for information about obtaining the book or phone (732) 445-7762, Ext. 627.

Girl, Interrupted

by Susanna Kaysen

(Random House paperback, 1994)

In the late 1960s, the author spent nearly two years on a ward for teenage girls at McClean Hospital, a psychiatric facility in Boston, where she was treated for "Borderline Personality Disorder." This memoir provides a vivid account of her fellow patients and the staff. As in other works about psychiatric hospitals, the book has its "good guys" and its "bad guys," but the author is fairly even-handed in her treatment of both.

Now a motion picture: A film version of Girl, Interrupted was released in January. The movie stars Winona Ryder, Angelina Jolie,Whoopi Goldberg, and Vanessa Redgrave.

(A copy of this book is now in the Family Alliance library, which is located in the hallway near the Board Room in the Region Ten Building.)

Two important research projects by the National Institute of Mental Health

Family members and consumers are urgently needed to participate in genetic studies of Bipolar Disorder and Obsessive Compulsive Disorder. The researchers hope to find genetic markers and vulnerability genes for these two disorders and, as a result, be able to develop better medications. Participants contribute in two ways: a confidential phone interview and a sample of blood. No travel is needed. Those who become part of the study receive $25 for their interview time and $25 for giving blood.

For further information on the Bipolar Disorder study, call Mrs. Maxwell at (301) 496-8977 (collect). For more information about the Obsessive Compulsive Disorder study, please call John Gause at (301) 496-3421 (collect).

On the Web...

Charlottesville Calendar

www.chvillecalendar.com

Information about the Blue Ridge Family Alliance meetings is now published online. The calendar is a community service of The Daily Progress. Our thanks to Mort Shor for keeping our listing up-to-date.

Borderline Personality Disorder

www.bpdcentral.com

Resources for persons who care about someone with Borderline Personality Disorder can be found on this site. There is great advice for parents on how to help their BP child, and how also to take care of themselves in the process.

Support group

www.windsofchange.com

This online support group for those with bipolar disorder offers general information, tips on avoiding manic episodes, testimonials, personal stories, reading lists, chat rooms, message boards, poetry, art, a mailing list, and more.

Mental illness takes huge caregiver toll

from the Mental Help Web site(http://mentalhelp.net)

The family burden of mental illness may be greater than previously known, according to a national survey examining attitudes and behaviors associated with schizophrenia.

In a survey conducted by Consumer Health Sciences (CHS) and the National Mental Health Association (NMHA), data was gathered from 1,328 family caregivers and 879 patients that reveals the mental health of many family caregivers borders dangerously close to clinical depression due to the stressful demands of treating and living with a person suffering from schizophrenia.

Among other items, the survey found that family members who care for loved ones with schizophrenia face a host of distressing, burdensome problems. Oftentimes, patients who are not treated properly turn to drugs and alcohol, occasionally become aggressive and many -- estimates range from 25 to 40 percent -- attempt suicide.

Close to one-third of caregivers surveyed said that the emotional and behavioral symptoms of the illness caused them extreme hardship. Drug abuse, suicide threats and violent behavior, while not necessarily daily realities, exist as constant sources of anxiety and are cited by more than half of caregivers as their most pressing concerns.

Schizophrenia is the most common and disabling of the major mental illnesses, affecting nearly 2.7 million Americans. The illness is characterized by delusional and confused thinking, hallucinations and social isolation. In fact, more than 40 percent of schizophrenia patients participate in no structured activity on a daily basis, according to the survey.

Symptoms of schizophrenia generally appear as people approach their late teens and early twenties. Because family members tend to ascribe "bizarre" behavior to typical adolescent problems rather than mental illness, many patients are improperly diagnosed and remain untreated for several years. In many instances, unfortunately, they wait four years, on average, to see a doctor after first noticing problems with their child

From state hospital to family home

For many years. people suffering from schizophrenia were confined to state mental hospitals; however, a movement towards deinstitutionalization shifted much of the caregiving burden or chronic schizophrenia patients from state hospitals to families. According to the CHS survey, 77 percent of caregivers said they play an extremely important role in the treatment of the person for whom they care. Seventy-eight percent of the caregivers surveyed say that health care professionals do not understand the problems that caregivers face in caring for a person with mental illness. Survey data confirms that caregivers’ involvement in treatment is broad. Almost one-third of the respondents said they speak frequently with health care providers about the treatment plan for the patient. The survey also reveals that caregivers’ relative ease in living with and helping to treat patients varies with the choice of antipsychotic medication.

Medications Offer Relief

Antipsychotic drugs have been used for more than 30 years, but they are hampered by a variety of disturbing side effects that often interfere with patients’ compliance to the prescribed dosing. The introduction of "atypical" medications, such as clozapine, olanzapine and risperidone, offered many patients relief from symptoms without the misery of side effects such as uncontrollable twitching of limbs.

John Docherty, M.D., a psychiatrist at Cornell University Medical College and advisor to the schizophrenia survey, says that, based on the survey, patients and caregivers alike are more satisfied with the atypical medications than the older medications, such as haloperidol. "Our research suggests that the new atypical antipsychotics provide caregivers and patients with an increased level of assurance compared to the traditional antipsychotics. They are most satisfied with the medication clozapine and importantly, caregivers report clozapinie patients in particular are less prone to violent or threatening behavior."

When asked what most worried them on a daily basis, 53 percent of caregivers said drug abuse was at the top of their list of concerns, followed closely by suicide and violent or threatening behavior.

Nancy Schiller, although not a survey participant, knows first-hand about caring for someone with schizophrenia. Her daughter Lori has battled schizophrenia for more than twenty years. The Schillers’ experience is recounted in a book, The Quiet Room, which was co-authored by Lori. While Lori credits clozapine as a lifesaver, her mother recalls the devastating toll of the illness:

"I remember the two and a half years she lived at home after her first hospitalization as the most awful, stressful time I have ever lived through. I was always walking on eggshells, always afraid I was going to do something or say something that would set her off...I never slept well. I got up every night to see if she was still breathing. I would come home in the evening to find the garage doors closed and I’d be afraid to open them."

Survey methodology

Data was also gathered from patients, creating two separate databases. Consumer Health Sciences tracks the attitudes and behaviors of patients with schizophrenia and their caregivers, maintaining the largest commercially available databases on the subject. The company performs quantitative market research, specializing in providing information on consumer health care issues.

(This article was published in August of 1998.)

MESA FAMILY WORKSHOPS

Sponsored by Region Ten CSB and NAMI-Blue Ridge Family Alliance

MESA Family Workshops is a series of classes designed to provide education on mental illness and to promote stress reduction for parents, siblings, spouses, and other relatives and friends as they support their loved one who has a severe psychiatric disorder. A family member and a mental health professional serve as co-leaders. Groups will be limited to10 participants. For information about the next workshop, please call Kathy Hughes (972-1884) or Conrad and Barbara Isak (296-1190).

New Address of NAMI:

Colonial Place Three, 2107 Wilson Blvd., Suite 300
Arlington, VA 22201-3042
Phone 1-703-524-7600
HelpLine 1-800-950-NAMI (6264) Monday to Friday, from 10:00am to 5:00pm

NAMI-BRFA Membership Dues - 2000

______ $ 25 - Family Membership (Receive NAMI, NAMI-VA and NAMI-Blue Ridge Family Alliance newsletters and meeting notices)

______ $ 10 - Basic Membership (Receive NAMI-Blue Ridge Family Alliance newsletters and meeting notices)

______ Please remove my name from your mailing list

NOTE: Dues must be received by April 15th to be included in the NAMI and NAMI-VA mailings.

(If you have paid dues directly to NAMI or VAMI, please disregard this notice.)

All dues and contributions are tax deductible to the extent permitted by law. Please make checks payable to BRFAMI and mail to:

BRFAMI, 1863 Winston Road, Charlottesville, VA 22903

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