Family Perspective
Our son was 17 and in high school, when he suffered his first psychotic break. My husband and I were devastated. The word “psychosis” was not a part of our everyday vocabulary, but we knew our son was seriously ill. We immediately turned to the medical community for help, but through a series of delays and miscommunications, it took nearly three months for us to connect with PEPP. Fortunately our son’s school guidance counsellor, who was familiar with PEPP, made the call on our behalf and within hours, our son was scheduled for a screening assessment.

The initial screening interview was followed by a more detailed assessment. Our son was assigned a psychiatrist and a nurse case manager. Batteries of tests, psychological as well as physiological, were administered. We, the parents, were interviewed extensively to obtain a detailed family medical history. In addition, the PEPP team encouraged us, as a family, to attend a day-long information and skills workshop, which addressed so many of our questions and concerns.

We gained so much confidence and reassurance from our frequent meetings with members of the team.These professionals did not dismiss our questions – instead, they openly encouraged us to articulate our observations and concerns! PEPP not only embraced our son, the patient/client, but also my husband, our daughter and myself. At every turn, we, the parents, were kept fully informed as to the treatment protocol for our son.

Our journey, although challenging, has been made significantly easier with the assistance of the PEPP team. Together we have weathered a hospital stay, a variety of drug treatments, and the upheaval of what we once considered a normal family life. PEPP has been there, and continues to be there, every step of the way, providing not only patient support, but also family support and education. Every effort is made to maximize the potential for a positive outcome.

Our family is ever mindful of the incremental progress that our son has made during these past two and one-half years. He continues to receive treatment on an out-patient basis and has resumed his schooling. The PEPP case management team worked closely with him to ensure a successful start to his academic year. His case manager was present at the preliminary meetings with the subject teacher and the vice-principal to fully apprise them of our son’s medical status. Our son has forged a trusting relationship with his psychiatrist and nurse case manager and welcomes the opportunity to share with them his innermost thoughts, hopes and fears. He complies readily with his medication regimen and has not shown any interest in experimenting with street drugs. He still makes his home with us, but has expressed interest in living independently at some point.

The future seems promising and ever hopeful.

A grateful PEPP mom

Our son’s first episode of psychosis occurred at age 17 within a background history of three generations of similar illness. My family members with this illness did not receive any counselling at all. They were responsible for receiving their own treatment and we were afraid of them.

This time, however, the PEPP Program has enabled our family to have a much better and healthier understanding of the illness being a disorder of the brain. Growing up I thought that my family members had a weakness in their personalities that caused disruption and chaos in our family life. Our son’s illness has enabled me to discover that this is not the case. Taking baby steps at the beginning, working with a case manager, receiving counselling, working with the help of other professional staff, our son continues to learn and live with his illness. He is very active in the process of his recovery and our family is learning to work together to enable him to accept his limitations and realize his potential.

We have found that we, as a family, are the key ingredient in dealing with our son’s illness, however, we would find it very difficult to deal with every situation without outside help, which came from PEPP. Problem solving skills learnt over time and the family members working in unison with our son have become an ensemble working together in recovery. Two reasons PEPP has worked for us are that they have professional expertise that we, as parents, do not have and our son has built up a trust in the professional people working with him. Over time we know we will all gain more confidence and be able to meet each challenge.

A PEPP parent

Client Perspective

I am a twenty-five-year-old woman and I have schizophrenia. I have been coping with the illness for about five years now. I was first hospitalized in the summer of 1996, and shortly after I quit my part-time job.

I felt that I had to quit because I believed that everyone was making fun of me behind my back muttering curses as they passed by me. I believed people were calling me names like freak, nerd, loser and whore. I kept these observations to myself for the most part as I was only able to speak about them with my psychiatrist. In time my experiences became more troubling. For example, I began to see what I called evil spirits in the shadows of my bedroom. With their glowing eyes, they would look piercingly at me. I also believed they could read my thoughts.

Feeling as though my soul was bared, condemned and disliked, I felt vulnerable and terrorized. With my soul bared to the shadow-world, I felt open to scrutiny by anyone or anything that gave voice to their thoughts in the form of my hallucinations.

Since my first psychotic episode I have had one relapse. It occurred in 1998 while my doctor was changing me from one antipsychotic medication to another. I have not had any visits from what I call the shadow-world since then.

I remember the intense fear attached to that period in my life well. I felt as though they were following me all the time. I was convinced there was someone in my own home following me, watching me and looking to hurt me in some way. I believed that normal house noises, like the furnace, washing machine and dishwasher, were really the footsteps or whisperings of someone evil I did not know.

I first experienced depression and as far back as 1990, I remember wondering if I would ever be happy. The troubling journey through psychosis began with the onset of puberty. My psychiatrist also believes that it could have been triggered by the stress of high school. I have since learned that this early period is called the prodromal phase of psychosis.

My recovery began in 1996, after several years of illness, when I started taking Risperidone, an antipsychotic medication. I remember how I felt the first time I took medication for my problem of psychosis. I took a small dose of an antipsychotic medication every day, and within two weeks, my world turned unbelievably around. My parents and I almost couldn't believe it. I thought to myself in astonishment, who would have thought that a tiny little pill could make the terrible evil spirits and voices that felt so real go away?

I felt happy and at peace very quickly. I felt free again and the weight from my shoulders vanished. Beauty in the world existed for me once again. I had lost my sense of innocence and wonderment in the world early before my psychosis permeated my mind and emotions.

Throughout the past five years in treatment, I have not been without struggles. Once my psychotic symptoms were under control, my primary difficulties were side effects from the medications. After about a year on Risperidone I developed uncontrollable blinking. This was very embarrassing for me because I knew people could see it happening to me. I was uncomfortable talking to people. I felt as though the blinking made my invisible illness visible. This was the reason for my first medication change.

I switched to Seroquel and the blinking stopped. However, I started to have suspicious thoughts about a member of my family and, as a result, developed intense anxiety every evening. I switched to Olanzapine and the suspicious thoughts about my family member decreased. After a long period of patience and self-education, I was able to cope with the anxiety. Unfortunately, I developed the blinking side effect and all the associated embarrassment and discomfort, again.

Due to this this particularly undesirable side effect, I changed medications once again. I started taking Clozapine and have been taking it for about a year. Because of government regulations, my blood must be monitored every two weeks. I don't like getting my blood taken at all. However, it is a small price to pay for what I consider my freedom from almost all my psychotic symptoms.

I am indebted to the people who have helped me cope with my illness. I feel lucky to be where I am today and in a healthy state of mind. I believe that I have a sounder mind now than I have ever had.

For the first time I can say that I feel normal. I graduated from college, I can work, I can have and keep good friends, and I can enjoy family life. Most of all though, I can finally love myself and I have a more positive outlook. The demonic images and sounds are gone now so I can rest easy and experience life, as others know it to be. As it ought to be experienced.

A PEPP client