Understanding Your Illness - Florida Self Directed …

1 NEUROSCIENCE TREATMENT TEAM PARTNER PROGRAM. Team Solutions Schizophrenia: Understanding your Illness By Kay Johnson McCrary, EdD. Peter J. Weiden, MD, Editor-in-Chief Marcy Portnoff Gever, RPh, MEd, Educational Editor Schizophrenia: Understanding your Illness About the Author Kay Johnson McCrary, EdD, has developed and taught patient and family education programs for the South Carolina Department of Mental Health since 1984. She is presently Director of Patient and Family Education at Bryan Psychiatric Hospital in Columbia, South Carolina. Editor-in-Chief Peter J. Weiden, MD, is Associate Professor of Clinical Psychiatry at Columbia University, and Director of the Neurobiologic Disorders Service at St. Luke's Roosevelt Hospital in New York City. Dr. Weiden specializes in the public health aspects of medication treatment for people with schizophrenia. Educational Editor Marcy Portnoff Gever, RPh, MEd, is Medical Manager at Hastings Outcomes Management in Pennington, NJ, where she oversees the development of patient- Directed programs dedicated to optimizing treatment outcomes.

2 Ms. Gever specializes in patient education and is a columnist and author of numerous publications. Advisory Board Laurie M. Flynn Kim T. Mueser, PhD. Executive Director, National Alliance Associate Professor, Psychiatry, for the Mentally Ill (NAMI) Dartmouth Medical School Don Fowls, MD Henry A. Nasrallah, MD. Sr. Vice President, National Medical Director, Chairman, Department of Psychiatry, Options, Norfolk, VA Professor of Psychiatry and Neurology, The Ohio State University College of Medicine William Knoedler, MD. Director of Outpatient Services, Patricia L. Scheifler, MSW, PIP. Mendota Mental Health Institute, Director, Partnership for Recovery, and Unit Chief, PACT Program, Birmingham, AL. Madison, WI. Peter J. Weiden, MD. Kimberly Littrell, APRN, CS Director, Neurobiologic Disorders Service, President & CEO, Promedica, Inc., St. Luke's Roosevelt Hospital, Tucker, GA and Associate Professor of Clinical Psychiatry, Columbia University Margarita L pez Team Leader, Center Park Team, Project Reach Out, New York, NY.

3 Team Solutions | Workbook 1 Schizophrenia: Understanding your Illness Contents 2 Common Symptoms of your Illness 4 Recognizing your Symptoms 8 Recording your Symptoms 9 Reasons Why You're Having These Symptoms 12 How your Illness Was Diagnosed 14 How Much Do You Know About your Illness ? 16 Coping With a Difficult Illness 17 No Fault, No Shame, No Blame 19 Reacting to your Feelings 20 Building a Road to Recovery 22 Other Things You Can Do to Feel Better 24 The Danger of Relapse 28 Feelings of Anxiety or Depression 30 Handling Thoughts of Suicide 31 When to Call your Doctor 32 Handling Emergencies 33 your Emergency and Assistance Plan 34 You Are Not Alone 35 Helpful People List 37 What Can You Expect in the Future? 1. Team Solutions | Workbook 1 Schizophrenia: Understanding your Illness Common Symptoms of your Illness This workbook was written to explain what may be causing some of your symptoms. It may also help you find ways to manage your symptoms so that you can feel better and get on with your life.

4 Schizophrenia and schizoaffective disorder are illnesses that affect the way your brain receives and interprets information from the world around you. These illnesses make it hard for you to organize your thoughts. And you may find it hard to relate well to your friends. You may have heard your doctor describe some of your symptoms as positive symptoms, negative symptoms, and cognitive symptoms.. Positive Symptoms Positive symptoms do not refer to symptoms that are good. They refer to symptoms such as thoughts, beliefs, and sensations that you may experience, but which are not real. You might experience sounds, voices, or images that other people say they don't experience. These are called hallucinations. Noises may seem louder than usual. So it might be hard for you to focus on a conversation or to understand what other people are saying. Colors may seem brighter than usual or you might see shadows. Delusions (believing things that others say are not true) are another type of positive symptom.

5 You might feel afraid of being followed, harmed, or killed and not know why. These are all types of positive symptoms. 2. Team Solutions | Workbook 1 Schizophrenia: Understanding your Illness Negative Symptoms Negative symptoms may be described as lack of energy or motivation . you don't feel like doing the things you used to do when you were well. They are symptoms that may be hard to explain to other people. Some examples include: You don't feel like talking to other people You don't have much energy to do things You don't care much about how you look Cognitive Symptoms Cognitive symptoms refer to problems with learning and concentration. It may be harder for you to concentrate on things like reading a book or watching TV. Also, you may find it hard to learn new information the first time like getting directions to go someplace new. You may find it hard to focus on what someone else is saying. Or it may be hard for you to get your thoughts together to explain how you feel.

6 Treatment Can Help For many people, proper treatment can help improve positive, negative, and cognitive symptoms. One of the first steps in relieving your symptoms is being able to recognize them. The next few pages will help you with this task. 3. Team Solutions | Workbook 1 Schizophrenia: Understanding your Illness Recognizing your Symptoms Do you know what symptoms have bothered you the most? Identifying these symptoms can help you gain control over them. The next few pages are designed to help you recognize symptoms you're having now or those you may have had in the past. Not all of these symptoms will apply to you, or you may have other symptoms not listed here. As you read each statement, place a check in the box next to the statement if you've ever had that symptom. Having Trouble Concentrating It's hard to pay attention for long periods of time At times, I have too many thoughts My thoughts are sometimes jumbled or confused At times, I have trouble reading books or following movie plots It's sometimes hard to focus on what people are saying to me At times, it's hard getting my thoughts together I can't hear well over background noises Sometimes I lose my train of thought Other: 4.

7 Team Solutions | Workbook 1 Schizophrenia: Understanding your Illness Having Difficulty Talking to Others I find it hard to start a conversation I don't have anything to say It's hard to express my thoughts I can't understand people when they speak It's hard to have a conversation People sometimes don't understand what I'm trying to say Other: Overstimulated Senses Certain colors bother me they seem too bright or intense There are too many noises and sounds I can't focus on what I want to hear Noises are louder than usual sometimes Lights really bother me they are too bright Other: 5. Team Solutions | Workbook 1 Schizophrenia: Understanding your Illness Having Hallucinations I catch glimpses of someone following me I see ghost-like figures I hear a voice that no one else can hear I hear 2 voices talking about me I hear a voice telling me to do things My food or drink tastes as if it has been poisoned I smell sickly sweet odors It feels like something is crawling on my skin Other: Being Overly Suspicious I have many fears about being harmed or killed I think that people are plotting against me I believe someone is watching me Someone is trying to poison me People are following me Someone is playing tricks on my mind People are talking about me or making fun of me My neighbors are bothering me Somebody goes through my things and moves them Other: 6.

8 Team Solutions | Workbook 1 Schizophrenia: Understanding your Illness Having Delusions I have special powers or knowledge At times, I can hear other people's thoughts Others can hear or read my thoughts sometimes People on TV talk directly to me At times, my thoughts or actions are controlled by others There is something inside my body moving or trying to get out I have a special relationship with a famous person Other: Negative Symptoms Often, it's hard to relate to other people Usually, I'd rather be alone than with other people I just don't feel like planning or beginning any tasks Often, I feel like staying in bed all day I don't feel like washing myself, combing my hair, or getting dressed I seldom feel like talking with others Few things give me pleasure People have told me I don't show emotion in my face or voice I just don't feel like doing anything Other: 7. Team Solutions | Workbook 1 Schizophrenia: Understanding your Illness Recording your Symptoms Look at all of the boxes you've marked.

9 Which symptoms have bothered you the most over the past month? List them. 1. 2. 3. Which symptoms never seem to go away? 1. 2. 3. Which symptoms have gotten better within the past month? 1. 2. 3. What tends to make these symptoms better or worse? When you are finished writing your answers, read the next page to find out why you may be having the symptoms you listed above. 8. Team Solutions | Workbook 1 Schizophrenia: Understanding your Illness Reasons Why You're Having These Symptoms The symptoms you have listed on the previous page may be symptoms of schizophrenia or schizoaffective disorder. There are many theories as to why people may experience these symptoms. One explanation is that these symptoms occur when the chemicals in your brain get out of balance. You're not alone about 1 out of 100 adults suffer from these illnesses. It's not known why this happens to some people and not to others. One of the best ways to relieve your symptoms is to take medication that will help adjust this chemical imbalance.

10 As you keep taking your medicine, your symptoms are more likely to improve. Schizophrenia and schizoaffective disorder are illnesses that do not have a known cure yet. But the medicine can help you manage your symptoms. If you stop taking the medicine, your symptoms are more likely to return in the near future. That's why it's important to take your medicine every day, even after your symptoms go away and you're feeling well. What your Brain Chemicals Are Supposed to Do The brain is a complex network of nerve cells. These nerve cells communicate with each other by electrical impulses and chemical signals. The chemicals in the brain help to: 1. Receive accurate information from the world around you 2. Process the information (make sense of it). 3. Make decisions based on the information you receive and process . the frontal cortex helps you make future plans and guides you in new situations 9. Team Solutions | Workbook 1 Schizophrenia: Understanding your Illness The Way your Brain Receives Information Schizophrenia and schizoaffective disorder affect the information your brain receives in these ways: 1.