Oli's Schizophrenia

Oli’s

Schizophrenia

A Guide Through the Disease

Desmond Healy

Table of Contents

Acknowledgements

Prologue

Chapter 1

ONSET

Chapter 2

SCHIZOPHRENIA – THE BASICS

Chapter 3

FIRST HOSPITAL ADMISSION

Chapter 4

ANTIPSYCHOTIC DRUG THERAPY

Chapter 5

BACK IN CALGARY

Chapter 6

MORE PSYCHIATRIC WORDS AND PHRASES

Chapter 7

FALL BRINGS TROUBLES

Chapter 8

CLOZAPINE

Chapter 9

THE DR. ABBOTT PROBLEM

Chapter 10

GENETICS AND SCHIZOPHRENIA

Chapter 11

HOSPITAL LIFE AGAIN

Chapter 12

THE PREMORBID STAGE AND OLI

Chapter 13

THERAPY CHANGE: CLOZAPINE GIVEN A CHANCE

Chapter 14

THE ENVIRONMENT AND SCHIZOPHRENIA

Chapter 15

HOME AGAIN AFTER THIRD ADMISSION

Chapter 16

STRESS

Chapter 17

LIFE IN VANCOUVER

Chapter 18

OTHER TREATMENTS

Chapter 19

NOW AND THE FUTURE

Chapter 20

CAN SCHIZOPHRENIA BE PREVENTED?

Epilogue

Notes and References

for Oli’s Schizophrenia

Copyright

Acknowledgements

It is understandable that both Oli and Deb had reservations about the concept of this book. They agreed in the hope it may help others, with the sensible condition that to preserve their privacy, the names of main characters would be altered. I am grateful for their permission to proceed. Regretfully, it has meant that most professionals who have helped us as a family through these years are not identified in their own names. We are truly thankful.

Living in Vancouver, I have been able to benefit from the boundless energy of Susan Inman, who provides our schizophrenia community with regular updates on any relevant information concerning schizophrenia. As a home-bound student of the subject, much of the information has come from many sources on the internet, but as an exceptional open access journal, special mention should be made of Schizophrenia Bulletin.

It has been a pleasure to work with Tim Lindsay’s team in Victoria at Tellwell Publishing, including project manager Natasha Miller and editor Jen MacBride. An earlier draft was edited by Dania Sheldon. Dania made numerous helpful suggestions, and was very positive, despite possible qualms concerning the content, as she later informed me she had sympathy for the anti-psychiatry movement, having previously edited Ronald Bassman’s book, A Fight to Be.

Prologue

Unexpectedly, schizophrenia entered our front door seven years ago and became part of our family’s life. This is the story of our changed lives and what we have learned about the disease.

The sudden change was accompanied by a fear of the unknown. What had happened, what did it mean for our son and for our family, and what could we expect for the future? Bookshop shelves contain relatively few publications on schizophrenia compared with their offerings on other psychological and psychiatric problems. It is my hope that this book will add to that limited pool of information and guidance, presented in a compact and readable way.

Our son is Oli and this book chronicles his and our family’s progress in the first seven years after his disease was diagnosed when he was twenty-two years old. Chapters on Oli’s life in those years alternate with informative chapters on schizophrenia. How the disease may affect the person is explained. The symptoms of schizophrenia required for psychiatric diagnosis are defined. An account of treatments, both old and current, is given. The cause of schizophrenia remains unknown. The most plausible theory, in the light of present evidence, is that there is a genetic propensity to the disease at conception, and some unknown factor or factors, presumably in the environment, determine whether it occurs. By presenting current factual knowledge, interspersed with a personal biography that recounts how schizophrenia has progressed in one individual, I hope to give the reader a more intimate feel for the disease and a greater understanding.

Schizophrenia is a disease of the brain affecting the functioning of the mind, the ability of thinking, and what is thought. The schizophrenia brain has had a different developmental pathway from usual. At a critical time in this development, usually in late adolescence or early adulthood, the first break heralds the onset of the disease with psychosis – the sufferer loses contact with reality and may experience delusions and hallucinations, most often voices. This is the beginning of the active stage of the disease. Two earlier stages are now thought to precede this one: (1) the premorbid stage, during infancy and childhood, when developmental milestones are delayed; and (2) the prodromal (or precursor) stage, when some symptoms appear but are not yet diagnostic of psychosis. The premorbid and prodromal stages are usually only identified retrospectively.

The delusions and hallucinations manifesting in the active stage are termed positive symptoms, meaning they are additional to normal experiences. Initially, these positive symptoms overshadow the negative ones, which detract from normal functioning. Negative symptoms include apathy, inertia, and loss of emotion and joy in life. Cognitive deficits cause reduced ability in problem solving, learning, and memory. The negative and cognitive problems persist into the last chronic or residual stage, when positive symptoms usually abate and rehabilitation towards a more active and interesting life can begin in earnest. Oli has progressed to this last stage. There is now relief from the tensions of the positive symptoms and even a lessening of the negative ones. Oli is moving towards a more independent and satisfying life.

The Four Stages of Schizophrenia

Schizophrenia is a problem for all sufferers and enduring disability is one of the defining features of the disease, but the degree of disability is variable and closely correlates with the cognitive impairment. For some, such as the autobiographer Elyn Saks, this can be very limited, allowing them to achieve subsequent career success. Saks and others have been able to give vivid descriptions of their hallucinations and delusions, and have been held as exemplars. It must be remembered, however, that these sufferers are a minority and perhaps could even be considered outliers. For most, there is a challenge in achieving independence and socialization. At the other extreme, persisting positive symptoms with negative symptoms and cognitive deficits may result in severe disability with lifelong need for assisted living or even institutional care.

Oli’s passage through schizophrenia so far has been close enough to the mean to provide a practical example of the presentation, treatment, rehabilitation, and reasonable hopes for the future, but the future for all patients with schizophrenia is a challenge. Schizophrenia is a life-changing disease for sufferers and their families. It is tempting to focus on the mind-bending psychotic changes of hallucinations and delusions of schizophrenia, but it is the other more fundamental changes that alter the person with schizophrenia and have lasting effects on the remainders of their lives. There are heavy costs from schizophrenia for the sufferer, their families, and society.

After Oli had been admitted for more than a week in his initial hospital assessment in Victoria, he turned to his mother, Deb, and me and complained with a mixture of anger and despair:

Why are you doing this to me? You are trying to tell me I have schizophrenia. Do you know what this means? I won’t have a job. I won’t have a wife. I won’t have a family. I won’t have a life. Why are you doing this?

He was distraught and we were stunned. It was the first intimation that he was even considering he had schizophrenia, as before he had denied any illness, and would often do so in the future. In this moment, we were amazed that he knew what the consequences may mean. We had no reply. We knew it may be true. Roughly 80% or more people with schizophrenia remain unemployed. Factors determining the potential for employment include social functioning prior to illness, which for Oli was good; prior work experience, which for Oli was minimal; and symptom severity. Schizophrenia is also associated with markedly reduced social contact.

Lack of employment exaggerates this social isolation, reduces intellectual stimulation and general interest in life, and reduces pride and feelings of self-worth. Unemployment means there is no income, thereby resulting in dependency on family and state. We are able to cope financially and Deb and I have enough to provide for the needs of Oli as well as ourselves. Most are not so well-off. Lack of income can mean hardship, poverty, and homelessness. There may be need for part-time or even full-time care by a family member resulting in further loss of income and trend towards poverty for families as well as sufferers. In trying to put a dollar value on the cost of schizophrenia, loss of income for both sufferers and caregivers must be the largest item to consider, and one that is hard to put an exact figure on. Oli surely had the potential for a professional career, with a good income. For others, the figure would be less, but still a significant loss.

Unemployment can partly be explained by apathy, asociality, and general inertia associated with schizophrenia, but a very important factor is cognitive ability. Reduction in cognitive ability, which is present in some way in all sufferers, results in an average reduction of IQ that is about fourteen points below their peers. There is reduced response time, speed of mental processing, reasoning, planning ability, problem solving, and learning. Verbal memory and working memory are affected negatively, as are attention and vigilance. Instinctual ability to identify social cues from facial expression or tone of voice is less than usual. Because of the social stigma attached to schizophrenia and confidentiality rules, employers are often not aware of the extent of the disability of these employees. One can imagine the problems these sufferers would have in most positions. Take the example of a sufferer working at a busy check-out counter trying quickly to identify, count, and price items; use the scanner and computer; and resolve any issue out of the ordinary, no matter how small. The disability causes more stress than usual, so they tire easily and are perceived as not only incompetent but lazy as well. They are fired. With yet another blow to their self-esteem, they face more social isolation, loss of income, and the inevitable wrangling with state services for support, for which they are often unable to do themselves.

Oli still retains sufficient cognitive ability to be able to work. He wonders what he could do, and wishes for something – anything – to interest him and widen his horizons. In fact, the negative symptoms are now barely evident in him, and he retains some ambition and hope for a better life. He can be an interesting conversationalist, and being apparently fit and healthy the casual observer would wonder why he does not just get a job. Yet due to his antipsychotic drug therapy, taken mostly at night to lessen drowsiness during the day, he sleeps for twelve to thirteen hours, so he has a shortened day. Even with this long sleep, he is drowsy in the early morning. His lack of coordination and fine tremor limit his activities. When he attempts to clean up the mess around his plate at mealtimes, the results are never perfect as he just does not seem to observe the details. This lack of simple observation is an impediment that extends to other circumstances. Having illegible writing does not help and neither does his inability to drive a car. Anxiety verging on panic in close spaces with other people limits his ability to take a bus or use a train or airport, and perhaps even be present in an office, shop, or other workplace. And then there is his OCD, with checking and rechecking – all time-consuming.

Social isolation with less likelihood of marriage (60-70% do not marry) and of having children will mean a loss of the intimacy which is at the heart of human life. For those who were married prior to the onset of the disease, schizophrenia means difficulties which strain the relationship, and the disease is associated with increased risk of separation and divorce. Consequently, life with schizophrenia is even more constricted and inward-looking. Parents who develop schizophrenia or those who have schizophrenia and become parents are often unable to fulfill their duties, thereby placing burdens on other family members and society as a whole, not to mention the children themselves.

Life with schizophrenia does not just affect life as it is lived, but also life expectancy, which is reduced by fifteen to twenty-five years. Suicide accounts for 5 to 13% of those premature deaths. Command hallucinations, where, for example, the patients’ voices will tell them to throw themselves in front of a moving bus, may account for some of these suicides, but this is unusual. A feeling of utter hopelessness is a more prevailing factor. The victim of suicide is more likely to be male, young, and never married. He is more likely to have functioned well before the suicide, there is often a history of substance abuse and prior suicide attempts, and he will have better insight of the disease of schizophrenia. About 50% of those with schizophrenia lack varying degrees of insight. Insight has at least three main factors, the first being aware you are ill, the second being aware you need treatment, and the third being aware of the consequences of the disorder. Those who retain this third part of insight are at greater risk. Women who attempt suicide generally have a lower age of onset of the disease and no children. The antipsychotic drug clozapine is the only one known to reduce suicide risk, and a trial of its use is indicated if suicide risk is suspected.

Although suicide is an important factor in schizophrenia, most premature deaths are related to natural causes with risk factors of hypertension, smoking, raised blood glucose, physical inactivity, and obesity resulting in increased cardiovascular disease and cancer. Since most antipsychotic drugs often cause weight gain and tendency towards the metabolic syndrome with diabetes and cardiovascular disease, these drugs have been questioned as a cause for premature mortality. Perhaps surprisingly, however, studies have failed to suggest any link in premature mortality or even cardiovascular disease with antipsychotic drugs. Smoking and physical inactivity appear to be much stronger risk factors than obesity. Though it was once believed that people with schizophrenia had a lower cancer risk, a study from France published in 2009 involving 3,500 schizophrenia patients found increased death risk from cancer, especially breast cancer in women and lung cancer in men, with the latter probably related to the trend to increased smoking. What becomes evident from the causes of premature death in schizophrenia is that it results in disease of the body as well as the mind. People with schizophrenia are less physically healthy.

Schizophrenia sufferers are not only more liable to these diseases of the body, they are more prone to other problems of the mind. Anxiety is more common with schizophrenia and hence the old euphemism, an attack of nerves, for the problems of schizophrenia. At its worst this results in panic disorder, which entails recurrent unexpected panic attacks affecting about 15% of schizophrenia sufferers. Depression episodes affect 50% of schizophrenia sufferers. Substance abuse, which is a problem for almost half of patients with schizophrenia, is associated with lack of compliance with treatment. OCD, which occurs in almost a quarter of schizophrenia patients, may be related to clozapine therapy in some cases. Post-traumatic stress disorder (PTSD) and schizophrenia coexist in up to 29% of schizophrenia cases. All these problems cause further disability and entail increased medical resources to cope.

The great majority of schizophrenia patients will spend time in hospital. Compared to patients without mental problems where inpatient care is often being progressively shortened to a matter of days at most, inpatient care with schizophrenia is measured in weeks if not months. Once discharged from hospital, if family care is not available, then supervised residential care may be needed in nursing homes, staffed residential facilities, or group homes. Out-patient mental health clinics will have psychiatrists and case managers, but also may have psychologists, occupational therapists, and social workers. Sometimes there may be staff involved in patient, family, and public education. Schizophrenia is over-represented in the homeless, with an estimate of 11% prevalence among those affected. This results in further strains on social welfare systems.

Irrational violence and resulting death, periodically highlighted by the media, are dramatic features of a subgroup of people with schizophrenia. This is a main cause of the stigma associated with schizophrenia, as it engenders caution if not downright fear in many when they hear the word. A report from Australia in 1998 found an increased risk of homicide (meaning killing whereas murder implies that it is intentional) of ten times in those with the diagnosis of schizophrenia compared with the general public, and another study found that schizophrenia tripled the risk of being imprisoned. Hence, the criminal justice system features as another facet in the cost of schizophrenia. The subgroup responsible for these problems predominantly involves those who are not being treated, those who are being inadequately treated, and especially those with concomitant substance abuse. The potential for violence to others as well as themselves is one justification for compulsory treatment. Another, of course, is that as the brain is affected by the disease of schizophrenia, the sufferer may not be in any way competent to assess the