Schizophrenia Looking at the future A guide about staying well and getting the most out of life, for a brighter tomorrow.
Schizophrenia is an ongoing condition like asthma or diabetes
Introduction Schizophrenia is a serious but treatable brain disorder that we believe is caused by a biochemical imbalance in the brain. It can affect your ability to know what is real and what is not. Psychosis is a key feature of schizophrenia and includes symptoms such as delusions, hallucinations, disturbances in thinking and communication, and withdrawal from others and social activities. In some people, schizophrenia develops very gradually over time. In others, it can come on suddenly and worsen rapidly. Schizophrenia is not rare and anyone can be affected. It affects approximately 1% of the population. Just like diabetes or asthma, schizophrenia is an ongoing condition that needs to be looked after over the course of your lifetime. More often than not, this will include taking medication. The symptoms will not get better without treatment. Treatment with medication is an essential component of a treatment plan and can help to prevent relapses. Psychosocial interventions, such as counseling or individual or group therapy, are also an important part of treatment. And don t forget those closest to you you will also need help and support from your family and friends. There are lots of things that you can do to help yourself and better manage your disease. Some ideas are found throughout this guide.
TREAT EARLY When you experience symptoms of schizophrenia, it is important to talk with your doctor without delay. Research suggests that the longer the time between the onset of the illness and the time treatment is started, the less favourable the outcome. The Schizophrenia Society of Canada sums up some of the benefi ts of early treatment as follows: Less interruption in your life due to your illness Less strain on your family Better chance of getting back to everyday life, like seeing friends or going to school and/or work Less chance of frequent relapses Less chance of developing depression, anxiety, or alcohol or substance abuse Lower risk of self-harm (e.g. suicide) Better quality of life Medical Treatments Like diabetes, asthma, and other chronic conditions, schizophrenia is not an illness that you can manage all on your own. Most likely, your treatment plan will involve both some form of counseling or psychosocial care and taking medication. Taking your medication regularly, even when you don t feel sick, is very important. The chance of a relapse can be greatly decreased by staying on medication as prescribed by the doctor. Fewer psychotic symptoms will be experienced by staying on your treatment plan as outlined by your doctor. There are a number of medications to treat schizophrenia. For example, there are short acting and extended release oral medications as well as short and long acting medications given by injection. 4
doctor or doctors will work with you to fi nd the medication and dose that is right for you. All medications have some side-effects. If you experience side effects that bother you and make you think about stopping your medication, immediately talk to your doctor. Your doctor may be able to change the dose or the medication to manage and minimize side effects. It is important that you take your medication as prescribed by your physician. Missing doses or not taking your medication as prescribed can increase your risk of relapse. Oral Medication If it is diffi cult for you to remember to take your medication every day, here are some ideas you might want to try: Put your medication in pillboxes labeled with the days of the week Check off when you take your medication on a calendar Take your medication at the same time you do a routine daily task, such a brushing your teeth or eating breakfast Set a watch or phone to beep when you should take your medication. Not taking your medication as prescribed can increase your risk of relapse 5
Injection Medications Medication by injection may be an option. Depending on the medication, injections are given every few weeks at a clinic, hospital or doctor s offi ce. The regular injection schedule is a good way for you to see your doctor or nurse more often. If you need help remembering your injection appointments try one or more of the following: Schedule the appointments on a calendar Ask a family member to mark the appointments on their calendar as well If you have a PDA, you can schedule appointments with an audible reminder. Other Medications Often, schizophrenia goes hand-in-hand with other conditions that also require taking prescription medications. It is very important to make sure your healthcare team is aware of all medications you are taking including both prescription and nonprescription (over-the-counter). Also tell your healthcare providers about any habits you have such as smoking, drinking caffeine (e.g., coffee or cola) or alcohol, or using recreational drugs. Any of these can interact with your antipsychotic medication. Keeping your physician up-to-date with this information will help to maximize the benefi ts of your treatment while minimizing your risks. It s also a good idea to fi ll all prescriptions at the same drug store or pharmacy. Your pharmacist may be able to spot potential drug/drug interactions or drug/disease confl icts before they create problems. SOCIAL TREATMENTS Schizophrenia isn t just an illness with psychiatric symptoms it can impact on all aspects of your life, such as how you communicate, your motivation to do things or look after yourself, and your relationships with family, friends and co-workers. Medication is crucial for treating your symptoms but a good part of your treatment plan will involve 6
participating in programs and activities such as psychosocial therapies. Education and therapy can help you learn ways to cope with your illness and develop skills to deal with everyday life and situations. The combination of taking your medication and being part of a psychosocial treatment program increases your chances of staying well, and also helps improve your everyday life. Schizophrenia often goes hand-in-hand with other conditions LEARNING Learning about your illness through books, videos, education programs and support groups is very important. Education programs can help you and your family better understand your illness and your treatment plan. This can help you cope with the different parts of your illness, stay on your medication, improve functioning and quality of life and reduce the risk of relapse. Talk to your doctor or contact the Schizophrenia Society of Canada to fi nd out what resources are available in your area. The Schizophrenia Society of Canada and the provincial and local chapters also have many educational materials that can be mailed to you or are available over the Internet. Schizophrenia Society of Canada 4 Fort Street, Winnipeg, MB R3C 1C4 Tel: 204-786-1616 Toll Free: 1-800-263-5545 Fax: 204-783-4898 www.schizophrenia.ca Email: info@schizophrenia.ca For contact information for the Provincial Schizophrenia Societies, see Appendix A 7
TAKING ACTION As a person with a medical condition, you can and should play an important role in making decisions about your treatment. In order to make informed decisions, you need to learn about your illness, possible treatments and different types of care and support. When talking with your healthcare providers ask for information about all treatment options or support services, including those that may not be immediately available to you. Decide what your goals and values are. What risks are you willing to take? What benefi ts are most important to you? Talk with your healthcare providers about your preferences. When the responsibility for decision-making is shared between you and your healthcare providers, it increases the odds of getting the kind of care that best meet your individual needs. Sometimes, the treatment, care or support you need is not readily available. In that case, you may have to negotiate with your healthcare team, private insurance company or public healthcare provider for the care your want. Support groups can help you function better in daily life ADJUSTING Counseling, group activity programs and talking to friends and family are all important to getting and staying well. Schizophrenia can affect the way you act in social situations and lead to the loss of social or life skills. In addition, the fi rst episode of psychosis often occurs when people are young and still developing their social and life skills. Fortunately, social skills training, either through one-on-one counseling or in a support group, can help you feel less overwhelmed in social situations and help you function better in daily life. 8
AVOID RELAPSES In some cases, the symptoms of schizophrenia may return. This is called a relapse. Preventing relapse is one of the biggest challenges that you will face as you live with schizophrenia. Taking your medication as prescribed is probably the single most important key to preventing relapse. A person with schizophrenia who stops taking his or her medication has up to a 90% chance of having a relapse within one year. Staying well and avoiding relapse will require a team effort involving you, your doctor and your family or friends. The signs of a relapse are similar to the behaviours that occur before a fi rst episode of schizophrenia, such as sleeplessness, withdrawing from social activities, deterioration of personal hygiene, disordered thinking or speech, and signs of visual and auditory hallucinations. A relapse can also coincide with sensitivities to minor stresses or hassles, either at home or at work. A good working relationship with your doctor and having family and friends aware of the warning signs of relapse can help ensure you get treatment as quickly as possible. Some of the most important things you can do to help reduce your likelihood of relapse are: Accept your illness Try to avoid stressful situations Learn how to handle stressful situations Always take your medication(s) as prescribed by your doctor, even if you feel well Watch for signs that your symptoms maybe returning Talk with friends and family daily Join support and social groups 9
Keep your doctor and your family in the loop about your medications and how you are feeling in your daily life. For example, share what is going well for you or what obstacles you are fi nding diffi cult to deal with. Talking and dealing with things as they come up can be valuable, and help you stay well. Watch for early signs One key to avoiding relapse is learning what the early warning signs of psychosis are and letting your friends, family or doctor know as soon as you notice them. The signs may differ from person to person but are similar to those that occur prior to a fi rst episode. They can include: Hallucinations and delusions (known as positive symptoms ) Lack of emotion or interest in things normally considered important, feeling less connected emotionally to what is going on around you or getting little pleasure from things that you normally enjoy (known as negative symptoms ) Disorganized thinking, inappropriate emotional reactions and disorganized behaviour Anxiety or depression, particularly in combination with psychotic symptoms Suicidal or aggressive thinking or behaviour Impulsive behaviour 10
There are also lots of other less common early warning signs. Some of these include: A change in your personality, relationships with others, or school / work performance Not being able to cope with minor problems Forgetfulness Unexpected hostility Shift in basic personality Unusual sensitivity to your environment Changes in sense of taste and smell Unusual sensitivity to stimuli (noise, light, color) Noticeable and rapid weight loss If you notice any of these early warning signs, it is very important to talk to your family, doctor or healthcare team. Often, if you recognize and treat your symptoms early enough, you may be able to avoid a full-blown relapse and recover. Schizophrenia can be a diffi cult and sometimes even disabling disease to live with if you let it. But with the right medication, a longterm treatment plan, and plenty of patience and care, the future can be promising. The steps are simple: understand your illness, follow your treatment plan, take your medication, and talk regularly with your healthcare and support teams and your family. And most of all, believe in your future. 11
The Provincial Schizophrenia Societies Appendix A: British Columbia Schizophrenia Society #201, 6011 Westminster Highway Richmond, BC V7C 4V4 Tel: 604-270-7841 Toll Free in BC: 1-888-888-0029 Fax: 604-270-9861 http://www.bcss.org e-mail: bcss.prov@telus.net Schizophrenia Society of Alberta 309, 8989 MacLeod Trail South East Calgary, AB T2H 0M2 Tel: 403-264-5161 ext 33 Toll Free in AB: 1-800-661-4644 Fax: 1-866-273-1780 http://www.schizophrenia.ab.ca e-mail: info@schizophrenia.ab.ca Schizophrenia Society of Saskatchewan P.O. Box 305, Station Main Regina, SK S4P 3A1 Tel: 306-584-2620 Fax: 306-584-0525 http://www.schizophrenia.sk.ca email: sssprov@sasktel.net Manitoba Schizophrenia Society 100-4 Fort Street Winnipeg, MB R3C 1C4 Tel: 204-786-1616 Toll Free in Canada: 1-800-263-5545 Fax: 204-783-4898 http://www.mss.mb.ca email: info@mss.mb.ca Schizophrenia Society of Ontario 130 Spadina Avenue, Suite 302 Toronto, ON M5V 2L4 Tel: 416-449-6830 Toll Free in ON: 1-800-449-6367 Fax: 416-449-8434 http://www.schizophrenia.on.ca email: sso@schizophrenia.ca 12
Société québécoise de la schizophrénie (SQS) 7401, rue Hochelaga Montreal, QC H1N 3M5 Tel: 514-251-4000 ext 3400 Fax: 514-251-6347 http://www.schizophrenie.qc.ca email: info@schizophrenia.qc.ca Schizophrenia Society of New Brunswick PO Box 562 130 Duke Street Miramichi, New Brunswick E1V 3T7 Tel: 506-622-1595 Fax: 506-622-8927 http://www.schizophreniasociety.nb.ca e-mail: ssnbmiramichi@nb.aibn.com Schizophrenia Society of Nova Scotia Room B23, E.C. Purdy Building 300 Pleasant Street Dartmouth, NS B2Y 3Z9 Tel: 902-465-2601 Fax: 902-465-5479 Toll Free in NS: 1-800-465-2601 http://www.ssns.ca e-mail: ssns@ns.sympatico.ca Schizophrenia Society of Newfoundland & Labrador 205 206 West Block Waterford Hospital Waterford Bridge Road St. John s, NL A1E 4J8 Tel: 709-777-3335 Fax: 709-777-3524 http://www.ssnl.org e-mail: ssnl1@yahoo.ca Schizophrenia Society of Prince Edward Island P.O. Box 25020 Charlottetown, PE C1A 9N4 Tel: 902-368-5850 Fax: 902-368-5467 http://www.schizophreniapei.pe.ca e-mail: schizophreniapei@pei.aibn.com 13
This booklet is designed to help you understand more about schizophrenia and what you can do to get the most out of your therapy. It is not intended to replace talking to your doctor or healthcare professional. If you have questions about your treatment or your medications, or for more information, please talk to your doctor.
The earlier the treatment, the more favourable the outcome
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