NAMI MD: News About Mental Illness



		Home \| Latest News \| Site Map \| NAMI MD \| Mental Illness \| Policy \| News \| Affiliates \| Help for You \| Help Us \| Join \| Web Sites \| Other Organizations \| Glossary \| Search News on Mental Illness Book Review - The Day the Voices Stopped (Winter '02) Maryland Schizophrenia Conference (Winter '02) The Other Terrorism (Winter '02) Ask the Doctor by Mark Komrad, M.D. (Fall, '01) "Stigma thrives in silence" by Libby Pedrazzani (Fall, '01) Brain Exhibit at the Smithsonian (Fall, '01) Childhood Revealed: Art Expressing Pain, Discovery and Hope Touring Exhibit (Fall, '01) Mental Illness: Education and Research through the Millennium (Summer, '01) Ask the Doctor by Mark Komrad, M.D. (Summer, '01) I Am Not Sick: I Don't Need Help (Summer, '01) Book Review The Day the Voices Stopped, by Ken Steele and Claire Berman The odyssey of Ken Steele�s life unfolds in this poignant biography. At the tender age of 14, Ken begins to hear delusional voices and soon learns it�s a symptom of schizophrenia. Plagued by constant taunts attesting to his worthlessness and ever present suggestions to kill himself, his failed first attempt to obey the voices� command and commit suicide, lands Ken in the psychiatric ward of the local hospital. Pain and haunting truthfulness fill this narration as Ken writes about the life that follows - a roller coaster existence that lasts 33 years. When their legal obligations end the day of his 18^th birthday, Ken�s parents abandon him. They are unable to cope and equally unwilling to endure the �embarrassment� involved in supporting a mentally ill son. Ken moves to N.Y.C., where he gets a job � soon lost. Facing eviction from his room at the YMCA, he falls victim to several men in the prostitution trade. A downward spiral leads to yet another suicide attempt. At which time the reader gets a good glimpse through his eyes at life in a mental institution. Ken speaks about the debilitating regiment of drugs used in the 1970�s; what it�s like to lay for hours in restraints; or spending days in an isolation chamber � all common practices employed at he time, as a means to control a patient amid their indeterminate term of commitment. But Ken Steele�s story as the title indicates is ultimately one about recovery. In 1995, Risperadol banished Ken�s voices and changed his life. After 33 years, Ken discovers he is free, but the sudden absence of voices unmasks an unexpected irony. Ken notes that his voices kept him company. Now, he felt all alone. In the years following his recovery, Ken Steele became an imposing advocate for the mentally ill, and spearheaded a successful effort to register consumers across the U.S. to vote. His inspirational story � The Day the Voices Stopped, is a triumph over tragedy � an empowering, touching life-story. Reviewer�s note: I had the honor of meeting Ken Steele at NAMI�s Legislative Conference in February, 2000. I was sad to discover that Ken died the following October from heart disease. However, I believe Ken�s spirit will continue to live in his memorable biography. By Rita Tate, Past President NAMI MD, NAMI Anne Arundel County [top] Maryland Schizophrenia Conference Two prominent Maryland researchers presented an update on schizophrenia research at the Maryland Schizophrenia Conference on November 13^th. Robert Buchanan, M.D. from the Maryland Psychiatric Research Center summarized the most recent research in pharmacology and told the audience what we can and cannot expect of the medications now available for schizophrenia. Dr. Buchanan noted that the main effect of traditional medications is to block dopamine receptors. These medications are quite effective in eliminating psychotic symptoms, but do little to correct cognitive deficits or negative symptoms. Their potential side effects are extrapyramidal symptoms, sedation, and weight gain. The hope that the newer medications might be more effective in reducing primary negative symptoms has not been realized yet. Neither is there substantial evidence that cognitive functioning is significantly improved with the newer medication. While those taking Clozapine did show some improvement in attentional functions and verbal memory, it was not superior in executive functioning. These are the cognitive skills that are so important in work and social life. Dr. Buchanan noted that there is a large study of the new generation of medications underway at eh National Institute of Mental Health (NIMH). More definitive answers should be forthcoming when that study is completed. The second researcher on the program was Alan Bellack, Ph.D., from the University of Maryland, Baltimore. Dr. Bellack also addressed the topic of cognitive impairment, but with an emphasis on its relationship to successful rehabilitation. The adequacy of cognitive functioning is strongly related to work and other adaptive functioning. Medications alone, Dr. Bellack noted, are unlikely to solve the problem of rehabilitation. The cognitive deficits in schizophrenia tend to be diffuse. They seem to be neurocognitive systems problems that may have been developing from early childhood. Dr. Bellack said that problem solving and improved recall can be taught in laboratories, but it is uncertain that this learning has an impact elsewhere. Dr. Bellack and colleagues in the field are searching for new, more effective directions in the rehabilitation of individuals with schizophrenia. The afternoon was capped off by presentations given by E. Fuller Torrey, M.D. and Fred Osher, M.D. regarding outpatient commitment. We thank all of the speakers for their eloquent points. By Agnes Hatfield, Ph.D., NAMI Prince George�s County [top] The Other Terrorism While driving home today, I hear for the hundredth time, �After the events of September 11th, life in America will never be the same.� I, in no way, intend to diminish the horror of that fateful day. I�ve seen the Pentagon and have felt the grief, fear and anger. However, I have read and heard and experienced a very similar statement. �After it happens, life will never be the same.� There has been a national tragedy going on for generations- terrorism in our homes. The first time the belt or board becomes some kind of �honorable� weapon, or words become destroyers of self, or ever more horrendous, a small body becomes a sick object of sexual pleasures, the life of a child is never the same. Home becomes a scary place rather than a safe and secure one. Confusion abounds when those you love and need are doing things that hurt- physically and emotionally. In order to make sense out of what�s happening you have to become the �bad� one because they can�t be- they�re mom and dad or brother, sister, uncle, Grandpa. How can you�re hero�s do this hurtful, confusing stuff? This horrible secret our families and nation choose to keep is �killing� our children, who are then expected to become emotionally stable adults. There are those survivors who are able to live decent, though deeply scarred, lives. I can�t take away the hard work they�ve done to overcome enormous odds against them. However, there are millions, including myself, who are survivors of a different sort. We bulge the mental health system trying to learn not only how to live some sort of life, but sometimes just live. Many of us are so damaged suicide is our constant companion. Everyday tasks that most take for granted can be enormous struggles. We deal with Depression and Post Traumatic Stress Disorder. One of my fellow warriors made a very poignant observation. After September 11th and the beginning of the anthrax scares, she said, �There are already enough people living with post traumatic stress in this nations, we don�t need any more.� As we struggle to heal from the terrorism of September 11th, I make a plea to not stop the work being done by other brave souls to end the terror happening in our homes. These brave souls work against great odds- resistant families and government. There was already a national tragedy happening to our smallest, most vulnerable patriots before September 11th. We need to work, as a nation, to take care of our children better than we have up to this time. That very moment when the first violation occurs, and the little life is changed forever, we lose too many pieces of the fabric that holds us together as families, communities, and a nation. If we forget the little ones, we forget the potential that could-have-been. By Ellen L. [top] Ask the Doctor, Fall '01 Q: �Have you heard of any studies that would connect the medication Depakote with polycystic ovaries?� Concerned Family Member Montgomery County, MD A: Polycystic Ovary Syndrome (POS), also known as Stein-Leventhal Syndrome, is usually a benign condition. Symptoms include irregular menstrual period, mild obesity and abnormal hair growth in unwanted areas (hirsuitism). More rarely, menstrual periods stop altogether (amenorrhea). It is due to benign cysts in the ovary that result in elevations of testosterone in the blood stream. Though this condition occurs in about 5% of women in the general population, it does seem to be much more common in women taking Depakote (Sodium Valproex). In fact, it seems a risk particularly associated with Depakote compared to other anticonvulsants. Nobody is quite sure why, but this has been noticed in the research on patients with epilepsy--by far the largest group which takes this medication. Now Depakote has found its way into psychiatric practice and is formally approved by the FDA for the treatment of acute mania, and often used as a mood stabilizer in bipolar and related disorders. So, it is important for female psychiatric patients and their families to know more about POS and its association with Depakote. In one study of 41 women with epilepsy on Depakote, up to 57% of the post-pubertal women had significant elevations of testosterone. In fact 38% of pre-pubertal girls taking Depakote also had elevated testosterone. The symptoms of these elevations were obesity and abnormal hair growth. These women�s ovaries weren�t examined, but it is presumed they were probably polycystic. In one study of 10 bipolar patients on Depakote, though all had gained weight, none had other signs of POS. But 10 may have been too small of a sample. In an interesting study, 15 rats were fed Depakote for three months. Their ovaries enlarged by an average of 20% in weight, and most developed multiple ovarian cysts. There is also some evidence that Depakote may increase insulin levels, and this may contribute to weight gain as well. One study of 20 women with epilepsy with POS due to Depakote, showed that this condition went away in half of them, one year after the Depakote was switched to Lamictal. In other words, the other half still had the problems even after switching to a different anticonvulsant. Though most anticonvulsants, like Depakote, that are used in psychiatry (e.g. Tegretol, Neurontin, Lamictal) can cause weight gain, it�s the combination of weight gain, menstrual irregularities and abnormal hair growth that suggests polycystic ovaries has developed. It�s certainly something to watch out for if you are taking Depakote. The diagnosis can be made by measuring the testosterone level in the blood and looking at the ovaries with ultrasound imaging. Though the hirsuitism and obesity have cosmetic consequences, and irregular menstrual periods are disconcerting, POS is not dangerous, unless menstrual periods stop all together. However, irregular menstruation or amenorrhea can result in infertility. Other than discontinuing the Depakote, or trying to find an alternative mood stabilizer, there isn�t much that can be done about POS. Sometimes menstrual periods may be able to be restored using birth control pills. So, as with all side effects from medications, if you are taking Depakote and develop POS, you will have to weigh the benefits of continuing Depakote against the discomfort of these side effects and against the risks of stopping the Depakote or switching. That kind of balancing act is why medicine is as much an art as a science; a kind of team-art in which both the physician and patient are the artists working together to sculpt the best outcome. Mark S. Komrad M.D. Dr. Komrad practices psychiatry in Towson and appears widely on radio and TV discussing topics in psychiatry. He can be reached at 410-938-4206, or WWW.KOMRAD.YOURMD.COM [top] �Stigma thrives in silence� The truth and simplicity of this statement echoed in the hearts of the attendees at The First Symposium Addressing Stigma and Discrimination, sponsored by �On Our Own�, held on March 25, 2001. Dr. David Sacher, the United States Surgeon General, passionately spoke of his offices� efforts to eliminate stigma against people with mental illness; and also described an effective program begun in Australia to prevent suicide. �Educate don�t berate.� The Chicago Consortium for Stigma Research gave strength to this advice, which was given by Kay Jameson. Patrick Carrigan presented the results of the Chicago Research, which upheld what those of us with a mental illness have always known; the public stereotype of us is one of negativity, dangerousness, incompetence, and weakness. Unfortunately, this belief also leads believers to react with anger and fear and this, in turn, causes behavior such as the refusal of jobs and housing opportunities. An even greater heart breaking tragedy is the tendency of the victim to self-stigmatize, believing these demoralizing myths! The good news is these myths can be dispelled; by the very people who are most affected. When one on one contact is made and open discussions take place, accompanied with education, there is a high possibility of changing attitudes. Kay Jamison shared some very useful information with us on how to bring about change in the media. �Educate don�t berate�, angry words bring out responses of anger, not understanding. Rather, give a pat on the back when a positive article, TV show or movie is seen; and send information along with future offers of help and information. As we left this exciting and self-empowering Symposium the words of Ruth Sanchez-Way was like a beacon of light, �Hatred is not a family value.� By Libby Pedrazzani NAMI MD Board Member [top] Brain Exhibit at the Smithsonian The Smithsonian has an exciting exhibit on the brain that will be in Washington DC until January 2, 2002. You can take a virtual walk through cerebral mega models in "Brain: The World Inside Your Head," an exhibit at the Smithsonian Institution's Arts and Industries Bldg. Read about it at the National Institutes of Health webpage: http://www.nih.gov/news/NIH-Record/08_21_2001/story01.htm Smithsonian Associates' Campus on the Mall has a series of lectures and classes on the brain this fall in conjunction with the exhibit. The lectures cover a wide range of subjects such as "How the Brain Works", "Brain Disconnections" and "Treating the Troubled Mind". There are charges for these classes. For more information, visit the Smithsonian Resident Associates website: http://residentassociates.org/rap/idx-brain.asp The exhibit and the classes are made possible by a grant from Pfizer. [top] Childhood Revealed: Art Expressing Pain, Discovery and Hope Touring Exhibit The New York University Child Study Center has created an exhibit as part of a public awareness campaign about child mental health. Childhood Revealed: Art Expressing Pain, Discovery and Hope is an art exhibit, based on the book published by Harry N. Abrams, of over 100 pieces of art created by children who have a mental illness or have a psychological reaction to a difficult life circumstance. The goals of the exhibit are to increase awareness and decrease stigma of serious mental health issues confronting children. The exhibit will be at Russell House Office Building Rotunda in Washington, DC on November 5-9, 2001. For more information: http://aboutourkids.med.nyu.edu/articles/cr_touring.html [top] Mental Illness: Education and Research through the Millennium NAMI Maryland was honored to have Joyce Burland, Ph.D., creator of the Family-to-Family Education Program that has touched so many lives, speak at our Annual Conference on April 27, 2001. Dr. Burland�s talk is an inspiration to all. Here is a highlight... �For most of the last century, the world was told by psychiatrists that mental illness is a private matter. It is a subjective flaw. A problem cultivated in the crucible of dysfunctional family life, which, if those �enmeshed� would just quit being such lousy parents, and those affected would stop malingering and grow-up, would go away. This is not an issue inspiring public consternation or action; it�s personal, it�s homebound, it happens to people who should know better. I mean, when has public policy ever felt responsible for hardship perceived as self-induced, or as �reversible� by those who �bring it on themselves�? The bitter harvest of a century of blame is this: It sanctioned universal disdain, and it promoted civic amnesia. The relentless professional stereotyping of mental illness as character-based effectively discouraged public sympathy for those afflicted with brain disorders, and excused public policy from allocating resources that would meet their legitimate needs. Families and their loved ones with mental illness were shamed, shunned, silenced, and a nation of good people were kept in the dark, unaware of their human and civic obligation to assist. This is why it has been so difficult to forge a social contract around mental illness. By social contract I mean getting a fundamental accord, whereby civilized society and its appointed agents agree that mental illnesses are neurobiological brain disorders, and pledge to provide for their care and amelioration. We have a social contract around heart disease, cancer, developmental disabilities, even AIDS; but we do not yet have a social contract around mental illness. That is why NAMI exists, why NAMI persists. Whether persuading legislatures to pass parity, whether working at stigma-busting, consumer empowerment, family education, jail diversion, PACT Services, system change�the goal of all of our efforts is to secure the social contract withheld from us for so long. What we have endured, what we have been denied, is outrageous. We must storm the citadel of psychological misrepresentation. We must convince our nation that mental illnesses are real, that brain disorders deserve the highest priority in research, that effective treatments exist, and that with the right kind of help, millions of Americans with mental illness can lead productive lives.� Thank you Dr. Burland for your insightful description of where NAMI needs to be headed in this new millennium! [top] *ASK THE DOCTOR, Summer, '01* Dear Dr. Komrad, What is the prognosis for my 50 year old son with schizophrenia? Since 1985 when he was first diagnosed and treated with medication, he has been hospitalized and in group homes out of state. As a result of a jail sentence, he has been living in a treatment center for over one year taking Risperdal, Seroquel, and Clozaril. He still hears voices and does not want to give them up. The hospital will not release him unless he has both a place to stay - a hospital or a half way house and a treatment plan. Given his history and medication, will he ever be able to function in a community setting? Are there any facilities in Maryland to which he can be referred? I am 75 years old and would like to know what can be done for him. He has two brothers in Maryland who will help support him. A Reader from Bethesda, MD Answer: The one piece of good news about schizophrenia is that, as people age, some of the more serious symptoms begin to fade--particularly the hallucinations and delusions. To a lesser extent, even the negative symptoms improve on their own--low motivation, social withdrawal, disorganization, and so forth. These improvements seem to be a natural consequence of aging and are independent of treatment. Of course, if you add good treatment into the picture, the improvements are even greater. Working against this natural course of the illness are the ravages that under treated schizophrenics often experience throughout their lives--homelessness, poor medical care, fragmented psychiatric care, long period off medication (by their choice), and suicidal behaviors. So, they may not be in great shape if and when they do reach old age. A 50 year old person particularly needs a highly integrated system of care that includes residential treatment, a case manager, a structured daytime activity, a psychiatrist who is closely connected to all of these services, transportation, a primary care physician who is closely connected to the psychiatrist, access to more intensive treatment if necessary-- such as a day hospital, and an inpatient hospital unit. Fortunately, there are a couple of such integrated programs in Maryland that specialize in the treatment on schizophrenia and provide this kind of comprehensive program. Moreover, they will accept Medicare ad Medical Assistance--the two insurance coverages that people with chronic mental illness typically carry. Sheppard Pratt, for example, has been praised by E. Fuller Torrey as one of the most comprehensive and robust treatment systems for people with schizophrenia. (For more information about Sheppard Pratt visit www.sheppardpratt.org) A spectrum of services makes it much less likely that a mentally ill person will fall between the cracks--socially, psychiatrically, medically, or residentially. Incidentally, this man is apparently being treated with Respirdal, Seroquel, AND Clozaril. There is absolutely no scientific evidence that the combination of these new medications are any better than using one of them alone. Mark Komrad MD, a graduate of Yale, Duke Medical School, and Hopkins Psychiatric Residency, is an Assistant Professor of Psychiatry at the University of Maryland, an Instructor in Psychiatry at Johns Hopkins, and on the teaching faculty of Sheppard Pratt--where he has a private practice specializing in the rehabilitation of people with schizophrenia and other serious mental illness. Please send your questions to: �Ask the Doctor� NAMI MD 711 W. 40^th Street, Suite 451 Baltimore, MD 21211 Or e-mail them to: dmlefko@aol.com [top] *I Am Not Sick: I Don�t Need Help* �I am not sick. I don�t need help.� How many times have frustrated families heard this statement when they were trying desperately trying to get treatment for a family member with a serious mental illness. Why do people with mental illnesses sometimes think that they are not sick? What can families do about it? Dr. Xavier Amador, a family member and a psychologist of considerable reputation recently wrote a book which he called �I Am Not Sick: I Don�t Need Help� based on his experiences with an ill brother and his work as a clinical psychologist. He has helpful things to say about why think they are not sick and some practical advice as to how to proceed. Dr. Amador says that people with mental illnesses do not believe they are ill because of a dysfunction in the frontal lobes of the brain. It is not that they are not willing to face the truth about their condition; they are incapable of understanding that they are ill because of their cognitive disorder. Who they are, he believes, gets stranded in time. They are still thinking like they did in their pre-illness time. The author believes this it is not possible to convince individuals with mental illness that they are ill. However it is possible to help the person see the need for medication even if he or she lacks the insight about his or her illness. Dr. Amador believes that one must first achieve collaboration through the following steps: (1) One needs to listen to what the person feels, wants, and believes. IT is also important to know his or her hopes and expectations. It is not easy but one needs to get a clear picture of the individual�s experience of the illness and the treatments received. Cognitive deficits such as memory, attention, and focus need to be noted. (2) Those who hope to help the individual with mental illness need to learn how to express empathy. They must understand all the reasons the person does not want to accept medication, even those that may seem bizarre to others. (3) Dr. Amador recommends that caregivers acknowledge that their relative has personal choice and responsibility for the decisions he makes. He says that caregiver and relative should make observations together about the positive and negative consequences of the decisions he or she has made. This is to be done in an objective way. He says people should avoid saying �see if you had taken your medication, you wouldn�t have ended up in the hospital.� Rather ask questions such as �What happened after you decided to stop medication?� How long after stopping medication did your voices come back?� One should ask questions rather than give advice. (4) Dr. Amador says that the final step is to arrive at an agreement on a plan based on the goals of the individual and how medication will serve to reach these goals. Reviewers Note: Xavier Amador�s philosophy seems to be a sensible one and may be helpful to some caregivers. While it is difficult to provide enough detail here, some families may want to purchase his paperback book. The author takes the reader through many examples which help clarify his method. Xavier Amador, I Am Not Sick: I Don�t Need Help (ISBN: 0-9677189-0-2) Vida Press, 1150 Smith Road, Peconic, New York 11958. ($17.95) Reviewed by Agnes Hatfield, Ph.D.
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