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Шизофрения

клинические примеры
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Chapter 2. First Symptoms

Recognizing That Something Isn't Right
Reba, mother of Eric:
It is of utmost importance that parents keep their eyes, ears, and minds open and objectively view their
child's behavior and seek professional help immediately before the illness progresses. I tried desperately to
convince other family members and professionals that my son, age 20 at the time, was suffering severely. He
would sleep for 16-20 hours a day and was extremely sensitive to light and noise. He would roam at night
for a few hours, restless. He complained of severe headaches and his bizarre behavior made him impossible
to live with. He had hallucinations, delusions, heard voices including the voice of God, became socially
withdrawn and isolated. He suffered from paranoia and could not concentrate. He was afraid to watch TV for
fear that "things" would come out of it and "get him." He displayed obsessive-compulsive behavior by
constantly washing his hands and face. He would stare at himself in the mirror while making weird facial
expressions. Unfortunately, no one believed that Eric, a highly intelligent, good-looking track star, would
behave inappropriately as I described. To my sorrow, it has taken seven years to finally get a diagnosis. In
the meantime, Eric fell through the cracks wandering aimlessly making his home on the city streets being
subjected to more anguish and suffering. He went for several years without contacting home. Fortunately, he
was rescued off the streets of Los Angeles and taken to the hospital where he was first diagnosed with
schizophrenia. Since 1997, he has spent most of his time getting stabilized and participating in his group in
hospital. He is now living in a group home and doing better but his road to managing his illness will be a
very long one. For seven years he was in denial, making necessary treatment impossible. Early detection and
diagnosis is extremely important in the treatment and management of this devastating disorder.

Audrey: [Sept. 1999]

I am the mother of a child who was born with Schizophrenia. I have never heard of this happening before.
He was diagnosed at the age of ten. He is now twelve and doing well on medications. He goes to a special
school for children with mental illnesses. I am concerned about my child's future and the likelihood of his
overcoming his disease. He functions well in a world which has been adapted to his needs, but still requires
almost constant supervision. The drugs have done wonders in making him co-operative enough to teach and
live with, but they do not make him adaptable to the "real" world of children his own age. I would like some
feedback from anyone who has experience with childhood schizophrenia.

Mike: [Nov. 9, 1999]

My first symptoms began in middle school when I thought I was the focus of everyone's attention. I believed
that every conversation or every laugh was an indication that others were ridiculing me. I lived in terror that
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regardless of my behavior, others would inevitably hurt me. I hid in a shell, and learned to only interact
with other children that could best be described as deviants and loners. I slowly became paranoid,
questioning others motives constantly. Feeling I was always on the outside of normalcy, I developed an
inner sense of rage toward people and life. I hated myself, my idiosyncratic behavior, and my isolating
beliefs. From the beginning I knew I was not like other people and that my chances for a normal, successful
life were slim.

Lindsay: [Dec. 1999]

I was thirteen when I first had signs of Schizophrenia. I never realized something was wrong though,
because the hallucinations and the delusions were so real to me. I was afraid of everyone. Video cameras
were lodged all over my room and the government was watching me. There were times when I thought
aliens were communicating to me through the street lights. I couldn't talk in the car, because the CIA had
tapped our radio to hear my mother and my conversations. I also heard voices and couldn't sleep at night. In
fact I got expelled from school when my grades went down the drain for threatening to kill someone because
"Mr. X" (the man in my head) told me to. During the expulsion was when I thought I was a vampire and I
began staying up all night and sleeping all day. I also quit taking care of myself and stopped eating
adequately. I was so confused!

Anonymous: [Dec. 22, 1999]

I have a family background of Autism Spectrum Disorders and only last week was I diagnosed
Schizophrenic. I spent some time in hospital after telling my psychologist that someone was telling me that I
had to set myself on fire to purify myself. I felt compelled to obey this implanted thought and felt very calm
and controlled about it. I am female 40+ and have had paranoid feelings regarding video cameras monitoring
me and microphones picking up my thoughts, for about 3 or 4 years. I have a good life otherwise even
though I am socially withdrawn and always have been. Depression and poor sleep patterns as well as
menopause are also making life a bit difficult but I am taking all sorts of medication now and have a good
support network, I think that is really important.

Scott: [Feb. 1, 2000]

My experience with this disorder has been a long one. Over 15 years. No one can know the pain, anguish,
degradation, and sorrow felt with it. However, with sheer will, the Grace of God, family, friends, and
neighbors, this illness will be conquered. I felt obligated to resume college at the age of 20 and it cost me.
The sight of the surroundings shook side to side and before I knew it I was hallucinating. I have been
hospitalized 4 times and I am now in a state of depression. However, I am working at least 3 days a week,
and plan on cleaning up my apartment. I am on 3 kinds of meds. Don't give up the ship! It's a continuous
process. Like that old Chinese boss told me, "Think Ahead!"
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Marguerite: [July 20, 2000]
I first started having suspiciousness and paranoia at around age 28 and left a great job because I was afraid
of being fired. I began thinking everyone was looking and laughing at me and they were gossiping about me.
This began to preoccupy my thoughts and I was extremely distressed and started to withdraw and isolate. I
would sit and stare and be preoccupied by fantasies and delusions of persecution. I felt there were people
who hated me and wanted to see me dead. I went to a therapist who recommended I see a psychiatrist, but I
refused to go. I didn't believe I was sick and was afraid of stigma. I only wish that someone had been more
aggressive with me in getting me to a psychiatrist. It would have saved a lot of pain, heartache and nearly
losing everything in my life due to this untreated illness. Luckily I am now on medication and have few
symptoms with Risperdal. I know now that I have an illness and that I need my medication. Thank heaven
for modern medication!

John: [Sept. 2, 2000]

I am male and twenty-six and I am a sufferer from schizophrenia. My first symptoms came when I was
seventeen. I felt that intelligence agents had bugged my living room. In the beginning, I had the insight or
awareness to realize this was unlikely to be true and I explained these paranoid feelings away. It had been a
difficult period; my parents had separated and I was at a new school I did not like and so on. But I soon
found it was more than just pressure. It was only a year later when I dropped out of law school that I
completely lost touch with reality: I was now convinced that I was being bugged. I could visualize the van
that was parked somewhere in the neighbourhood that contained the men who monitored my words. I even
believed my neighbours had co-operated with the intelligence services to plant the bug. This was my first
symptom.

Anonymous: [Sept. 24, 2000]

I was full of rage and disproportionate anger. I seemed to see it from me all the time. I was only 13 years old
and really rebellious. I hated everything and everybody. I used to throw chairs at my teachers and swear at
them. My parents were at a loss as to know what to do. I was also very depressed and was crying all the
time. Many people thought it was just teenage angst, but I knew there was something wrong with me. I tried
to commit suicide and was always listening to depressing music. I became so withdrawn from others that I
forgot how to function properly around people. I was always sitting alone in my bedroom completely
isolated, and loved it.

Then, I was okay again, until I hit the age of 17. I became very depressed and lived in two worlds: one was
dark, black, shallow, empty and very sad. The other was beautiful, happy, ecstatic, and ethereal. I lost touch
with reality and thought that I was in love with everything and that everybody was so good and even
godlike. I started hearing voices and thought that I really did live on a different planet where I exuded love,
and everything around me was evil. The plants outside had withered, turned black, and died. In addition, a
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sickly stench emitted from them. Animals turned into ravenous beasts. Even a friendly cat down the road
terrified me. Then, gradually, I was okay again until I hit the age of 21 and was admitted into a psychiatric
hospital where I was diagnosed as having Schizophrenia and Major Depression. However, my psychoses, in
general, seemed less extreme. Three years later, my symptoms were lifting and I could be moved into a
small counsel flat. As many people in my situation realize, it is difficult to take medication regularly. I
sometimes felt that I was healed, but the fruitage of the situation often testified otherwise, resulting in a
number of varied suicide attempts and psychosis. Happily though, I met a very understanding man who also
suffered from Depression. In quite a short period of time we found ourselves to be mutually supportive.
Things appeared difficult for us, but we knew more underneath and we have now been happily married for
two years. I hope in some way that perhaps this will help someone in whatever way it can, even if it is just
knowing that someone is there. It is good to write about it!

Laura: [Oct. 19, 2000]

I am 33 years old and I had a son at 17 who was born with severe mental health problems and mental
retardation. He has been diagnosed with Schizoaffective Disorder, A.D.H.D., Social Phobia, Anxiety
Disorder, Disruptive Behavior Disorder, and many other ones. My son has been hospitalized two times and
he is only 15 years old. The first time I couldn't believe the hatred in his eyes, I couldn't believe this was my
son! He was standing in front of me swearing and hitting me, telling me how much he hated me that I wasn't
his mother and he was going to kill me. All of this was coming out of my 11-year-old son's mouth while his
brother and sister were there!

And now just this year in April my second son was hospitalized for 5 days. He said he heard voices in his
head. I told the doctor that something was seriously wrong with him and he said I was over reacting. My
second son only had A.D.H.D., not to worry. A few months later my son set the house on fire. Everything
was destroyed. Then he shoplifted at a country fair store and said he wished he were dead. I called the doctor
and the doctor says still he sees no grounds for admitting my son nor would he see him! I took him to the
emergency room where they evaluated him and admitted him into the mental health ward. They are not for
sure what he has but they did say he had a high level of anxiety and depression, that he was having trouble
telling the difference between fantasy and reality. It's been six months and now I'm on depression medicine
and Valium. It seems like it never ends. I tell myself live one day at a time but it's hard especially with the
family like I got.

Brian: [June 12, 2001]

Just a few of the things I had noticed were my thoughts seemed to be broadcasting on the radio. I would be
thinking more and more that everyone was trying to get me, that there was a plot to get control of me. I had
also thought that maybe I was the last of the anointed and that maybe I was the Jesus of old, or one of his
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apostles. Then the feeling that everyone knew who I was and yet I still did not know. I could go on, but
why?

Patricia: [June 22, 2001]

My name is Patricia. It has been almost four years since I had the onset of Schizophrenia. Through that time
I have lost my family, four jobs, had at least seven nervous breakdowns before coming to terms with my
illness. During my seven trips to the hospital not once was I told what I had and that the medicine would
make me better. I was everything. I was delusional, paranoid, depressed, and had hallucinations. I heard
voices so distinct that I wrote their names in a book. Using what I was told (inside my head) their own
handwriting to list the names of the people who called. I once went to my mother and told her that my Aunt
Charolette called me up in my head and said to tell her hello. I had the delusion that the mafia was after me
and that if I told anyone, the person I told would die. So I never told anyone my feelings. Once during an
episode I thought I was Moses. I had my long white terry cloth robe on and I commenced to go outside and
run along the hillside calling up elk. Then I went to the edge of a cliff where I was just sitting, watching
traffic go by. The neighbors saw me and became alarmed that I would fall and hurt myself. They called my
poor mother. By the time she found me I was back in the house acting like nothing had happened. I ended up
in the hospital where I was given haldol. It made me have suicidal thoughts. It is my personal opinion that
they shouldn't give a dog this medication. Every time I went into the hospital and came out I had to learn
everything all over again. Finally my doctor got me on the right kind of medication and changed my life
around. My mother and sister thought I should be put on disability, but I couldn't see myself sitting around
be nonproductive. I fought hard. I was hospitalized in March. My boss fought for me to maintain my
position here at the university. She said I had been doing a great job and she didn't want anyone else for a
secretary. She gave me such confidence in a world that looks on us as unfit. My children stopped seeing me
because one day my daughter called me, and the police answered. They were taking me to the hospital. My
sister and mother had come to my house to take me to see the doctor. I didn't want to go back in the hospital
so I fought them. It was so demeaning to go in there. We played bingo. That was the extent of my care. No
one talked to me about what was going on. I too thought that people were watching me. My delusions were
so extensive that I thought people could see every move I made. So when I was alone I would do things to
see if anyone would say anything to me about it. I was lost for almost four years. Then one day when I came
home from the hospital I could see that I had been sick. How sick I was. The medication had finally taken
hold. I am still learning how to cope with this illness. I wish I could meet other people who have been
through this. I think it would help to talk to someone who has been down the same road. I thank you for the
opportunity to share this. I am thinking of writing a book. I want to share with others so that they won't have
to go through what I have. I lost my children because of all of this. It still makes me sad.

Patricia: [June 22, 2001]

I have written before. I have so much to tell about my illness. I wanted to add, that one-day I would be in the
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hospital on a behavior medicine ward and the next day I would be working in the President's office of
our local college. It was like riding a roller coaster. When I was in the hospital, not knowing what I had, I
couldn't tell anyone because of the illness. It was so ingrained in my head that telling was bad. That
something terrible would happen to the world if I divulged what was happening. That is why I feel it is so
important for someone diagnosed with schizophrenia to be told about the illness. My illness started with a
great depression. I would stand in my kitchen and cry buckets of tears not really knowing why I was crying.
I too had delusions that the radio was sending me messages. I am working at the university full time. I see a
therapist. I had to ask to be seen by one. The hospitals failed me in that they never communicated with me.
We had group meetings. There we discussed what we wanted to do during group activity. Did we want to
play bowling or bingo? I failed to see how participating in an activity such as this was supposed to help us
with our illness. I am resentful of the time I had to spend in the hospital. If someone would have comforted
me, put a warm blanket around me and told me they cared, that would have been more treatment than I
received in the hospital. I am now flooded with hospital bills. My credit has been ruined. All my debts have
been turned over to a collection agency. I have been told that it will remain on my credit report for seven
years. My insurance refused to pay because I failed to get authorization prior to going to the hospital. How
can you get preauthorization when you are in a catatonic state? I lost a job because I went in one day and
gave my resignation out of the blue. The voice in my head told me to do it. I was held accountable even
though I was hospitalized right after that. I have so much to tell and this is the first venue that I have had the
opportunity to do so. I am just grateful that I have a great support group. My family, mother, sisters, boss,
and some really great neighbors who recognize what I have as an illness. I feel like I am just starting my life.
Working here at the university I will be afforded the opportunity to take classes. Something I have always
dreamed of doing. With all the bad that has happened to me because of my illness, God has found a way to
bless me ten fold. It is reassuring to know that there are other people out there that have gone through what I
have. I am a woman, forty-nine years old. Starting over. I have gone through menopause. Not once did they
ever treat me for that. I feel they just gave me medication in the hospital to obtain the response they wanted.
In other words drugged me up until I came down from an episode. I had a great doctor who didn't treat me
while I was in the hospital because my insurance wouldn't pay for the ambulance to transport me to his
facility. Nevertheless, when I was released I called him and he gave me the medication Seroquel and Paxil.
They changed everything. They changed the way I perceived things. I will never be without it. Thank you
again for giving us the opportunity to share with others.
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Chapter 3. Psychotic Symptoms

Hallucinations
Reba, mother of Eric:
Eric, who is now 30 years old, has been caught up in a web of hallucinations and delusions for at least ten
years. There were times when he would look at me with distant bewilderment and scream, "Leave me
alone--you're not my mother!" At different times, Eric was obsessed with religion and the occult. His
paranoia affects every aspect of his life. There was one incident where he demanded an ax to chop his head
off and stop "it" in his head. The voices were just too much for him to cope with. At this point, admittance to
a hospital was required against his will. When Eric continues to take his medicine, the voices subside and his
thought processes improve. However, his condition will always remain "guarded" as he refuses medication
periodically, then he loses all perspective and gets rescued from the streets for bizarre behavior. I am
thankful that he has not been arrested and placed in jail for he is not a criminal. He is a very kind, tender
hearted, extremely sensitive person.

Rachel: [Sept. 15, 1999]

I first started hearing 3 male voices commenting on my behaviour and sometimes judging me, calling me
useless and lazy. These went away with medication but, when I relapsed I had just one voice that was telling
me to cut myself and kill myself over and over again. This was the hardest to deal with. When I was in
hospital during a bad bout of my illness I started seeing loads of big spiders coming out of cracks in the
ceiling, coming towards me. I was distraught.

Mike: [Nov. 4, 1999]

I never consider the running thoughts in my head as voices. It's like thinking out loud and I know it's not
possible, but I feel other people know what I'm thinking. I get nervous in almost all social situations and
panic. I can't talk to someone that I don't know real well without tripping out. I did drugs when I was
younger and had a series of bad trips or highs. Until recently I dismissed these strange thoughts as drug
damage or flashbacks.

Kim: [Jan. 23, 2000]

Recently I have been hearing a specific voice, a very evil deep mans voice. It started out sounding like the
devils voice, then it started talking to me, most of the time very degrading negative comments. I had a recent
trip to see my counselor. When the session was over, I was feeling a little better until that voice told me in a
evil creepy way "I am still here, even counseling won't get rid of me." When I was in my car driving home I
was so terrified of it and I was so scared, I just kept driving. The voice then told me to kill myself in a slow,
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painful way. That same evening I was watching the news and they had a segment about roller coasters.
When they showed the roller coaster from the cameras point of view, the voice started going "wooooooo
hooooooooo" like it loved riding the roller coaster.

Scott: [Feb. 1, 2000]

The only thing that keep going through my head is continuous music. A lot of times I'll self-inflict my
thoughts to some kind of music in order to have a flow to follow to get me through my day. I would say that
it happens about 70% of the time. I'm into house music so it isn't degrading to listen to. I'm sure a lot of non-
psychotic people listen to their thoughts this way.

Ron: [Apr. 11, 2000]

When acute, my positive symptoms are hallucinations and delusions. The hallucinations affect all my senses,
i.e., voices (hear things), visual (see things), touch (feel body sensations) and taste. What happens is that all
these hallucinations work together so they lead me into an alternate reality (delusions), which grows and
builds upon itself and takes total control of my being. This lasts for months or years to varying degrees. I
was psychotic for most of the 1980's.

Angie: [Apr. 22, 2000]

I have auditory hallucinations. Most of the time, even when I take my medications, the voices are very low
and stay in the background, sort of like a radio that is on but you can't always make out what is being said. I
always thought that everyone heard voices like that. When I am under a lot of stress, things get more out of
control: the voices get louder. It is like you are at a party with all this noise and it gets louder and louder. My
voices taunt me and ridicule me and eventually I want to kill myself because they convince me that is the
only thing I can do. I have had one nearly successful suicide attempt where I ended up in a coma for three
days and then in the hospital for several months. I have also had numerous other attempts. In addition, I have
a 3-1/2 year old son and in the last 3 years I have also had the voices telling me that I have to kill my son
because I shouldn't hurt him by leaving him here on earth. I have been able to get into the hospital on time to
stop me from doing any harm to my boy but I have hurt myself. Even in the hospital I manage to cut and
scratch myself. The antipsychotic medications work but if I take high enough doses to totally eliminate the
voices, then I am like a zombie and unable to function once I am out of the hospital and have to earn a
living. I do work full time as a Junior Accountant and see a psychiatrist on a weekly basis. Between him, my
husband, and a close friend, I have managed to survive so far but each hospitalization seems to wear me
down a little bit more, and the voices rage at me faster and louder. I tell myself that it would be easier if I
would take the higher doses of the antipsychotics especially when I am going through stressful times, which
seem to be all the time, but I always have this running dialogue with the voices against that idea and they
usually they win.
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Andy: [Apr. 26, 2000]
I heard voices almost nonstop for most of two years. At first, it was just two voices inside my head talking to
each. I thought they were just my thoughts and that nothing strange was going on. After all, doesn't everyone
hear his/her own thoughts? Later, more voices joined in the conversations, some of them from outside my
head. I thought I could talk to the voices with my mind, so no one heard me talking to them. Some of the
voices started telling me what to do. At first they tried to make me do benign things, like play on the
computer. Then they became nastier. They insisted that I hurt or kill myself or other people (I never obeyed
these commands). They taunted me in class and talked about me to each other, like I wasn't even there. I
started to have visions that I sometimes believed were caused by the voices. I saw my own death and the
inside of my head. I read words like "psychotic" in books where they didn't exist. This went on for weeks at
a time or even longer. Eventually, I got on medication and the hallucinations stopped.

Derek: [May 6, 2000]

I would hear this voice that I thought was God telling me that I was His favorite servant in all of history. The
voice, after a period of time would turn to one of condemnation, telling me that I was the devil, specifically
the Antichrist. No matter what I did, the prophecy concerning me and my destiny was unalterable, deceiving
the whole world and burning in hell for eternity. I had audiovisual hallucinations. One time I thought God
was speaking to me from pink colored lightning in a cloud. Another time, at my cousin's baseball game, I
had an encounter with who I thought was Satan himself, disputing with me over my friend's soul. My overall
experience with schizophrenia has been one of extreme false happiness (believing I was God's favorite) and
one of extreme terror (believing I was the Antichrist).

Ryan: [July 15, 2000]

During my psychotic episodes I did not hear voices, but during my last psychotic episode, which was also
the most severe, I would see people's eyes and they seemed to be turning blue.

Now that I am on medication, I don't see things, but sometimes when I am trying to fall asleep, I hear
whistling or sound effects. I also sometimes hear people's voices, but only once was it distinct enough for me
to tell what they were saying. I think it was a woman's voice and she said, "Speak up."

Laura: [Oct. 19, 2000]

I remember when I first noticed my son acting different. He would be yelling at the TV or the game he was
playing, saying "your not playing right!" I never put too much into it. At first I thought he had an imaginary
friend. Until one day he was in the pool and he was getting very upset, swearing and saying he was going to
kick their butts. I asked who he was talking to. He was the only one in the pool, and he said, "My friends.
What's it to you?"
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Now my son is 10 years old and he has always liked knives, so I would lock them up. One night he
looked at me and said that he was going to cut off his ankles and put the blood all over me. I was stunned! I
asked him, "Why? This will hurt you." He replied, "Not as much as it hurts you seeing me hurt." The look in
his eyes was so empty and careless. He was waking up in the middle of the night, screaming, "Get them off!"
My husband and I would turn on the lights to see what was there but there was nothing. We would tell our
son that we can't see it and he was getting even more upset. "They're here. I can see them and feel them!" he
said. My heart at that time just dropped; I felt so sorry for him and there was nothing I could do for him but
to hold him.

D: [Dec. 2, 2000]
I have just recently come out of hospital, recovering from a psychotic episode. I heard voices that I knew and
was thoroughly convinced were coming from Satan himself. Also, there was another voice berating me all
the time, calling me "stupid" and an "idiot", etc. I also saw things like vibrant colours and blood running
down the walls. All this was very terrifying and upsetting but was brought under control by the drugs. I also
thought I was evil and that Satan had possessed my body and my mind and made me act in strange and
unusual ways that I later regretted. I nearly tried to stab my husband. He has been wonderfully supportive
and understanding though, and realized I was a separate person than my illness.
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Delusions
Rachel: [Sept. 15, 1999]
My first delusion, that I developed early on, was that I had an alien inside of me. Something that had got into
every part of me including my bloodstream. I believed this for years. I used to cut myself to try and get rid of
part of it. No matter what my doctor said when I was finally diagnosed would convince me otherwise. I also
got very paranoid, thinking that people were following me and that I was part of a government program
because of the alien. That they were watching me all the time. I even thought that the staff in hospital were
part of the scheme at some points of my illness.

Lindsay: [Dec. 1999]

My family keeps telling me about this one delusion I had in which I thought I was a vampire and I actually
glued fangs into my mouth one night. My belief in this was so real that I became the vampire, I actually
would cut myself if there was no one else to suck blood. I tried to bite my friend and ended up hurting her
wrist. My fangs were made from plastic but no one was going to tell me that I wasn't a vampire. I actually
believed that the reason I got my days and nights mixed up was because I was a vampire and I had never
realized it before. Later I found out its just a symptom of Schizophrenia.

M: [Jan. 11, 2000]

I started having pain in my hand which according to blood tests was the early signs of arthritis. I checked
myself into a full-service hospital with a psychiatric unit. I talked to someone about insurance coverage and
was told I might not be covered because two weeks before I got out of a stand-alone mental hospital after a
two month stay. Besides I did not feel I deserved care since I was the Antichrist. These thoughts had been
building for years since I saw the movie The Omen on cable TV. I thought the world was going to end on
January 1, 2000 and the only one who could prevent it was Jesus Christ. He could not be born again until I
(the Antichrist) died so I decided to take drastic action. I signed myself out of the hospital went to the
hospital parking garage, climbed to the top (fifth floor) and jumped off. To my current relief, it did not kill
me but required another two month hospital stay along with major surgery. I broke my right leg, several ribs,
and my left shoulder. Any person who thinks they are the Antichrist and/or has supernatural demonic
powers should tell somebody and get immediate help. Please do not repeat my mistake. I was given another
chance, you may not be so lucky!

Scott: [Feb. 1, 2000]

Lost my job because of being bullheaded. Job was going so well that I quit taking my medication. The worst
thing that I have done so far and I cannot imagine anything worse because I had the job that I dreamed about
since I was 12. However, there is a chance to get that job back and maybe even a better one.
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Andy: [Apr. 26, 2000]
When I was first ill, I started to believe that thoughts were leaking out of my head into the surrounding air. I
felt that I needed to stay away from everyone so they wouldn't "see" my thoughts floating around and enter
my mind through them. Later in my illness, I thought a TV commercial for Paxil was making fun of me and
that the faculty members of my school were conspiring with my neighbors to steal money from my family. I
thought these ideas were perfectly rational at the time, but later, when they went away on medication, I
realized that I had been delusional for months.

George: [June 14, 2000]

I have had schizophrenia for about 18 years now. I hear voices that sometimes yell at me in Russian. My
grandmother was Russian and did teach me to speak the language. Until about April of this year I was
working in a Casino in the Security department. I believe that there was a machine hidden somewhere in the
casino that controls peoples' minds. It makes them lose money, etc. For some reason this machine kept track
of me at all times, and the people I worked with were trying to poison me. When I was at home, there were
people always watching me. I then draw the curtains shut and sometimes have to hide in the house so they
will not kill me. I cannot go to the stores or out anywhere at this time. I feel I am having a panic attack most
of the time also. I am seeing a psychiatrist and my wife has to drive me there. He has prescribed Risperdal,
6mg and Valium, 10mg for the panic attacks and anxiety. I still do not feel much better, nor can I work or go
out unless I have to, like to the doctor's.
 14

Thought Disorder
Altered Sense of Self
Andy: [Apr. 26, 2000]
My altered sense of self started very early in my illness. My hands looked smaller than they used to and this
worried me terribly. My left arm seemed to belong to something else and kept moving around when I didn't
want it to. It reached up my right sleeve and grabbed my right arm all the time.

Brian: [Jun. 12, 2001]

The first time this happened it really freaked me out. I was sitting in my kitchen, the only place I could sit
and sleep, and I got this really eerie sensation of how large my hands are. Still freaks me out to think of it...

Becoming the Centre of the World

Scott: [Feb. 1, 2000]
If I hear a familiar song and I know the words, I can inflict pain onto whomever I am looking at simply by
the fact that I am so familiar with the song. A strongly imbedded trait that I have because of the fact that my
mother always played popular music when she and I were alone, she doing dishes in the kitchen and me in
the living room while Dad was away. Usually drinking.

Rich Fantasy Life

Brennon: [Sept. 5, 2000]
When I was having one of my many psychotic episodes, I thought that God was going to take me to heaven
after turning my body into pure light. I thought that Moses and Elijah, from the bible, were my friends, and I
could see them in the mirror looking back at me with proud faces. At this time, I also thought that the T.V.
programs were only for me. Three years ago, when this happened, the postal service was on strike. They
talked about the fact that it was resolving and that delayed messages and parcels were finally going to be
sent out. I thought God, because of what I saw and heard on the T.V. was going to answer long lost prayers
and heal the sick and mentally ill. I thought God was going to come back on the day that the strike resolved.
I was very excited and so touched that I cried and laughed at the same time. The horrible thing about it was
that my Mom and Dad had to have me hospitalized because of my erratic behavior and the fact that I
climbed a mountain to meet God all without shoes on. I ended up staying the night up on this mountain for
the very, very long night. My feet were so badly scared and damaged that I couldn't walk for two months.
But anyway, like I was saying, the most horrible part was when I received antipsychotics. I slowly realized
that everything I hoped for was all made up in my mind and that all the wonderful and complex things I saw,
heard, and believed wouldn't happen and couldn't happen, ever!
 15
You see, for me, the worst part of this whole thing was realizing that I was tricked by my own mind. I
was so depressed and angry at God that none of it was actually real. So in ending, for me, having a fantasy is
much easier than realizing that it was never real and the realization that you can never trust your mind again,
at least not without questioning it a hundred times. My heart goes out to all who read this, and suffer from
schizophrenia. At least we have each other to lean on and medications that sometimes help with living a life
in a, sometimes, very ignorant and cold world. I hope that people will eventually learn that the mentally ill
are usually not violent like the media and Hollywood often describes many of us as. I know for me, that,
most the time I just wanted to be left alone.

Chapter 4. Nonpsychotic Symptoms

Generalized Anxiety
Reba, mother of Eric:
Eric has suffered from anxiety and displayed antisocial behavior since his pre-teen years. We would plan
family activities and at the last minute, Eric would refuse to attend. His isolation became unbearable for me
to watch, since he had lots of friends but never felt "good enough" for them. He suffered from a low self-
esteem and self-confidence. There is still much anxiety in Eric's voice, for he fears that he will not be able to
adapt to his new environment of a group home and fears failure in his treatment program. It is difficult for
him to meet financial obligations because of his limited income and he worries excessively about every issue
he has to make decisions about. He gets extremely apprehensive over medications and medical procedures.
He releases his emotions in his art work; at times producing beautiful paintings, at other times, very
disturbing paintings.

Rachel:
I first started getting anxious at university. Large crowds of people, buses, shops and other such things all
got too much for me and used to send me into a panic attack. I'd also get anxious at home, for no real reason.
That was the hardest to deal with because I'd constantly be running from my own anxiety, needing people to
be with and not giving myself any space.

I use music now to deal with these symptoms. I've written lots of self- absorbed disturbing stuff that comes
straight from the heart.

Social Withdrawal
Reba, mother of Eric:
Symptoms of withdrawal and isolation have plagued Eric for years prior to the full-blown onset of
schizophrenia. In his pre-teen years, Eric "walked on eggshells" actually on his tip-toes. He excelled in Boy
 16
Scouts but he was unable to cultivate the friendships he so desired. At the time, I assumed he suffered
from depression. We, as parents, need to address issues that appear to be abnormal. There were several "red
flags" that I ignored thinking that the problem would correct itself and things would be fine. Eric has a
couple of close friends, but genuinely trusts no one.

Rachel:
While I was at university and things became more serious, I would spent most of my time alone in my room
thinking of what people were saying about me, afraid to go outside and too unmotivated to do anything else.
I found social situations really anxiety provoking. When I did go out, I spent days afterwards feeling
paranoid about what I'd said wrong and what others thought about my behaviour. I just didn't seem to fit in.
This was at odds with my previous behaviour and thinking, as I was a really social person through school.
Now I'm recovering from my illness, I'm once again going out and seeing people.

Lindsay: [Dec 16, 1999]

I have serious social withdrawal. My behavior got so bad when I was psychotic that I didn't want to be
around anyone, and they didn't want to be around me! In fact I was recently diagnosed with comorbid Social
Phobia in addition to my Schizophrenia because I am still terrified of talking to people face to face and
talking to them gives me panic attacks.

[Jan 4, 2000]
I find the toughest thing with dealing with school is that, because of my medication, I am heavier than I was
before. And kids don't accept that! I have Social Phobia which makes it ten times worse. I am afraid of being
criticized by people unless I know I am accepted.

[Dec 16, 1999]

I don't have a lot of friends, only over the internet, especially Susan, the owner of www.guess-what.com.
She has been so supportive and I would have never thought she has the same illness I do!

Ron: [Jan. 22, 2000]

Withdrawal has always been one of my worst negative symptoms. I live in the middle of nowhere and isolate
myself badly. I've been on medication for 17 years. I don't go out much.

Algaz: [Jan. 23, 2000]

After being diagnosed with Schizophrenia 12 months ago and commencing treatment on Clozaril I find that
most of my symptoms have ceased but I am still left with Social Phobia. On a one on one basis I am fine but
in a large group situation I become agitated and nervous and find that I have to retreat.
 17
Jimmy: [June 16, 2000]
There has been a lot of spare time recently between calls, among us workers, at a call center where I work
part-time. A group of 4 or 5 people will be chatting around me sometimes. I wonder with the Risperdal and
years of Schizophrenia why I am at a loss of what to say and do with them. Is it an inevitable facet of
disability, or can I maybe relearn some social skills that I had as an outgoing and extroverted teenager.
Speaking with people one-on-one I am OK with, but with a group of 4 or 5 people, it is laughable because I
am so inept. People jump around from subject to subject and just blurt out whatever thought and feelings
comes to their minds. They don't mind sharing their feelings and concerns with their coworkers. I worry that
my feelings and concerns might be inappropriate and I should keep quiet. My girlfriend (that I met at work)
has no mental problems and has been helping me to understand that a lot of my feelings are OK and natural.
For just one instance, everyone gets burned out or brain dead after a long stressful day full of calls from
customers and their problems. I now share being brain dead sometimes with my bosses and coworkers and
make jokes about it without worrying that someone is going to call the police on me and I am going to jail
and mental hospital for having cognitive problems or something.

Laura: [Oct. 19, 2000]

My son has always had a social problem. He didn't like other kids to be around him. He would rather play by
himself. If he did go around another child to play, he would most of the time hit them or take their toys away
from them. This put a real strain on my relationship with anyone. It got to the point where I had no friends or
family that I could turn to. They wanted nothing to do with us! This made my son get even worse. He would
act out in the schools and be very disrespectful to any adult. No matter what I did it didn't help, so I started to
stay away from other people just so they wouldn't get hurt by my son.

Depression and Suicide

Rachel:
I've also been depressed much of the time that I've been schizophrenic, ever since I was about 11 or 12 when
my symptoms started. I felt like there was this great weight on me and everything was so hopeless. I
fantasized about death constantly, but only acted upon it later, earlier this year. I had 3 suicide attempts
from paracetamol (acetaminophen) and medication, and at the time it really felt like the right thing to do. My
first attempt was purely psychotic. I had these voices telling me to do it and that they'd help me. So much
was going on in my head that I ran off from hospital and got the tablets. Nurses later found me cowering in a
telephone box down the road. I've got only a vague idea of what was happening, I know I was petrified. The
other 2 times I was depressed both with life and my illness. I was in hospital for 9 months and that in itself
gets you feeling like it's not worth it. There is a big part of me now, though, that wants to live.
 18
Andy: [Apr. 26, 2000]
I suffered from severe depression off and on for about ten years before I developed any schizophrenic
symptoms. Strangely enough, I've been much less depressed since I became psychotic.

Lack of Motivation or Apathy

Reba, mother of Eric:
My son had just been discharged from the military and had not yet been diagnosed. I was amazed at his lack
of motivation since previously he was always physically active and usually ran up to 12 miles per day. Now,
he was energetic at times, then lethargic at others. I felt so horrible for insisting repeatedly that he job hunt.
He kept telling me he was "sick" but he did not reveal that he was having hallucinations, delusions, and
negative thoughts. At that time, I thought he was extremely depressed and attempted to seek professional
help to no avail. It is important for the family network to be supportive and encourage the individual without
pushing, arguing, or insisting that something be done, which only makes matters worse.

Rachel:
I was apathetic about everything and everyone. At my worst nothing could get me going.

Lindsay:
I have memories of my mother and me at home and her begging and pleading for me to help her clean the
house and I just wouldn't answer so she thought I was playing around. Pretty soon after that, though, like ten
minutes later, she would start yelling at me that I was just lazy and fat for shock value (even though I
weighed 130 lbs at 5'9") and that I wouldn't help her if my life depended on it. I just shrugged off her yelling
and fell back asleep. I felt like doing nothing! I don't even like to get up to take baths, I'd rather sleep the
whole day!!! I have a busy schedule though because I am trying to "get with the program" as friends call it.
Another thing is I am so apathetic that I am always asked if I am stoned! They think I'm on drugs, like weed
or something!

Regression
Reba, mother of Eric:
When Eric was first diagnosed at age 27, he was actually rescued off the streets and taken to hospital. He
was treated for several weeks then flown home. When I arrived at the airport to pick him up, I had not seen
him in seven years. I did not recognize him. His personal appearance had deteriorated to a point beyond
recognition. This could not be my son, I thought. But his voice sounded the same and I knew it was him. His
behavior was so childish and bizarre that it broke my heart to see him in this condition. He would act like a
toddler begging for a cigarette. It took weeks before he would sit at the table and eat dinner with his family.
He would stand with his back to us and eat his meal with his fingers. Several times Eric has experienced
 19
regression and it is very difficult to watch. Patience is a virtue and consistent, repeated effort in a kind
but firm voice must be practiced when dealing with periods of regression. It is certainly not appropriate at
any time to laugh, degrade, or scold in anger for regression is a part of this disorder.

Guilt
Laura: [Oct. 19, 2000]
I have a lot of guilt about my son. I felt that there might have been something that I could have done to
prevent him from having this terrible disease. I wish that I could make it all go away. That's what mothers
are supposed to be able to do. But I couldn't. I had no control over any of this. I felt useless. I blamed myself
the most because mental illness runs in my family and I had a baby anyways. I never thought that he would
go through all of this. To this day, I still feel guilty, wondering if I could have done something different and
it wouldn't have turned out this way. It's hard enough to watch an adult go through this than to have to watch
a child and not being able to help him.

DJ: [Jun. 27 2001]

Hi. I was just reading about the experiences of various Schizophrenics (though it's hard to label someone
that) & felt like sharing in the hope that it might help someone somewhere. I am DJ and have been seeing
psychiatrists since Nov.1990. Besides I have been attending Day-care facility since June 1995. I find myself
identifying with the other patients of Schizophrenia in that I used to feel like confessing every little "crime"
that I had committed as I felt very guilty and felt lighter as I felt that the persons around me anyway knew
about my activities because they could read my mind. I must hasten to add this used to be the case only
when I was very ill. I have had three breakdowns in the last 11 years & each episode was characterized by
similar thought patterns.

DJ: [June. 27 2001]

Hi, I am DJ. I have been diagnosed with Schizoaffective Disorder & Schizophrenia by various psychiatrists.
I fell ill when I was 21yrs. old in an Engineering College. In my three episodes of severe illness I have
regressed to the state that I felt people were helping me to defecate. Besides in the summers when I would
swim for an hour continuously, I would think that the others were aiding my breathing. I am an avid listener
of Pink Floyd and would think that scientists who were doing research were communicating through Roger
Waters' lyrics, amongst other musicians. I am a reasonable singer and was under the impression that people
were helping me in singing up to my full potential.
 20

Chapter 5. The Stigma of Schizophrenia

Matthias:
I had my first psychosis at 21, and I just applied for an important job at the student club. Everybody heard
about my problems and later on, I had no chance of getting the job because they probably knew of my
psychosis.

Reba, mother of Eric:

My son and I not only have to deal with his mental illness but also the prejudice and social stigma that goes
along with misunderstandings and misconceptions. At times when he discontinues his medicine and wanders
aimlessly from city to city, he appears to be a nasty, homeless bum suffering from malnutrition and
psychosis. I only wish people would be more compassionate, understanding and helpful to someone in need.
However, it's just the opposite. If more people would lend a helping hand in some small way and quit
ignoring those who are less fortunate by thinking they are just "bums" or worthless creatures with no
productive life, then maybe our attitudes could change. Just ignoring these issues is not going to make our
social problems go away. Quite the contrary -- unless something is done beginning with each individual's
attitude and awareness, our streets will become even more filled with sickness and affliction. Social stigma
affects everyone and is very hurtful to those of us who have family members who are mentally ill. There is a
lot of stigma dealing with family members who are not understanding and live in denial that another family
member is mentally ill. I have witnessed examples of social stigma for years dealing with my son's illness.
No one wants to talk about it -- it's like a plague or something! The more knowledge that is learned, the more
one understands. I wish that more people would take time to learn about mental illnesses rather than fear
these illnesses.

Algaz: [Jan. 25, 2000]

I have experienced both negative and positive reactions since my diagnosis, just 9 months ago. I have come
to the conclusion that before you can gain acceptance from others, you must first accept your illness
yourself. When I was first diagnosed, I thought the illness was a sign of my own weakness and I was
ashamed and disappointed in myself. It has only been through many hours of discussion with my psychiatrist
that I have come to realize that schizophrenia is a condition that is beyond my control and that I am not to
blame.
I have lost quite a few friends due to the stigma related to schizophrenia and I have at times had people
staring and whispering due to their fear and misunderstanding of mental illness. I have also lost friendships
due to the fact that I have had to change my lifestyle considerably since becoming ill. I am no longer able to
stay out all night partying and drinking as these habits tend to aggravate my illness and cause the return of
some of my symptoms. On the other hand I have a small group of friends who have stuck by me and
 21
supported me and learnt not to fear my illness. This I believe has helped me cope with my illness and get
on with my life. Since my diagnosis my life has certainly changed but even though my life is different it is
not necessarily bad. Once I had accepted my illness and been realistic about lifestyle changes and gotten
over the stigma in my own mind of having a mental illness I was able to show people that life does go on
despite mental illness.

Becky: [Aug. 13, 2000]

After 12 years of hell while I was in school, I was recently diagnosed with Schizophrenia. I had tried to
commit suicide Wednesday and ended up in the hospital. They first diagnosed it as a psychosis. Then just 10
days ago August 3, 2000, I was labeled as Paranoid Schizophrenia. Thank god that my parents are sticking
by me. Why me? I'm only 20.

Laura: [Oct. 19, 2000]

My son was only 10 when he was diagnosed with Schizoaffective Disorder. Many people wanted nothing to
do with us. It was like they were afraid that they could catch it too. Even the schools treated my son badly.
They would just assume he was a bad child before they even got to know him.

Gale: [Dec. 30, 2000]

I was first diagnosed with Schizoaffective Disorder in 1990. In 1992 I had it so bad for the entire year, I lost
most of my friends in a 12-step program. My non-12-step friends were there for me. I guess I found out who
my friends were and I had 3. It was a surprise to me because none of them were from the 12-step program
that I had spent many hours at. My sisters did not play a big part this year as one was in Hamilton and the
other I was not close to when I was well. My brother was very empathetic and my sister-in-law wrote me
letters which I depended on---I took them to the hospital with me. I was totally out of this year and I was
taken to another town's hospital for a month and I got better in early '93. In '95 it came back in spades. This
time I lost a fiance and more friends. I was very lonely. My one sister was good about coming over but
would tell me she and her girlfriend were going out and I was hurt I wasn't invited but I knew it was because
she didn't feel comfortable with me at this time. I snapped out of it again until the fall of '97 and I was once
again out of it again for the year. I again fell ill in the year 2000. My biggest obstacle, besides losing friends
every time I get sick, is when I do get my symptom I have an uncontrollable desire to walk and I scream or
cry when I walk and I realize it is selfish to put this on other people but I can't seem to control it. Today I
saw another man walk by the library doing the same thing. The time I was well I got my real estate license
and started my business up three times. I couldn't do it again. For one, my reputation is ruined and for
another, I don't have it in me. I also volunteered and was an advocate for rights for people with
Schizophrenia.

Chapter 6. Getting Help

 22
Seeking Medical Advice
What was it like the first time you saw a medical therapist or a psychologist?

Reba, mother of Eric:

Seeking medical advice for my son was definitely a challenge. I first took him to a local mental health office
where the psychiatrist informed me that I was over-reacting to my son's symptoms. He agreed to see Eric on
an out-patient basis and prescribed no medications. By the next morning, my son had packed a few
belongings and headed for a large city. It was seven years before a diagnosis was actually made. I was very
frustrated and upset at the psychiatrist for his unwillingness to listen to me as a parent describing my son's
symptoms. My son was paranoid and psychotic but sat quietly and pretended there was nothing wrong with
him convincing the psychiatrist to schedule future visits -- which he never kept. Finding a doctor who is
knowledgeable, understanding and trusting is of utmost importance. If the patient or family members do not
feel comfortable with the medications prescribed or possible side effects, then find another doctor more
satisfactory. Sometimes, during psychotic episodes, emergency intervention against the patient's will
becomes necessary. I have always felt that my son's mental condition would have not deteriorated so
drastically if medical intervention had taken place sooner.

Laura: [Oct. 19, 2000]

I got help for my son pretty quickly due to the fact that he was already involved with mental health. The
doctor referred him to a specialist because he too felt there was something more there, mainly because none
of the medicines were working like they should have.

Diagnosing Schizophrenia
What was your psychological response to the first diagnosis of schizophrenia?

Reba, mother of Eric:

Eric was symptomatic upon his discharge from the military at age 20. However, his diagnosis was not made
until he was 27. Fortunately, he was forced to enter a hospital after being removed from the streets of Los
Angeles. There he was diagnosed and a prognosis was given. By this time, his condition would be "guarded"
even with medications. It is extremely difficult to receive an accurate diagnosis unless the mentally ill
individual will cooperate and consent to treatment. It was actually a relief as a parent to have a definite
diagnosis. I never quite knew what I was dealing with and certainly my heart ached as a mother watching her
son constantly in a downward spiral of life. Getting a proper diagnosis is the beginning of an important
journey.
 23
Andy: [Apr. 26, 2000]
After I recovered from my first psychotic episode, I read everything I could on the subject of severe mental
illness. I had suffered from depression, OCD, and complex partial seizures for several years, so I was pretty
open-minded about things. I read about schizophrenia and thought the description sounded like me. I
couldn't convince my psychiatrist or my family, though. It wasn't until my 4th episode that anyone realized I
was sick.

Confidentiality
What do you feel about your loved ones contacting the psychiatrist without your
permission?

Reba, mother of Eric:

It is very important not to break the trust of a loved one while at the same time try to be informative to the
medical staff treating the patient. I have won my son's trust and keep in touch with him on a weekly basis
since he is out of state. There is constant contact with my son's medical team and social workers and I am
kept advised of his progress or regression.

What to Do in a Crisis
Reba, mother of Eric:
During a crisis, a calm, firm, reassuring voice is necessary so as not to upset the patient further. During a
psychotic episode, sometimes it is necessary to call an ambulance if the patient is trying to hurt himself or
starts destroying personal property. My son has intermittent rage attacks, which can be frightening to family
members and to himself. It is very important not to threaten or upset the patient by screaming or yelling.
Paramedics who are knowledgeable will be reassuring and most usually can handle the situation
professionally.

Chapter 7. Hospitalization
Hospitalization
Reba, mother of Eric:
The first time my son was hospitalized I was actually relieved. Now we could get a diagnosis and he could
begin a treatment plan and medication to help with his psychotic behavior. Since his hospital stay could not
last more than several weeks, he was flown back to his home with a hospital escort. His psychiatrist called
long distance every few days to advise Eric's condition and prognosis. I am very thankful to the excellent
hospital staff who gave us some answers to our questions which were accurate. A patient must feel
 24
comfortable with his doctor and medical team. Too often, the patient is not listened to honestly and
sincerely because of his illness.

Kathy: [July 3, 2000]

The first time I was hospitalized, it was in a large metropolitan county hospital. I had nowhere else to go
because I had no insurance. I had to wait a full day for a bed and slept on the waiting room floor. Once on
the ward, I was distressed to find that all the doors were locked. A male nurse took me into a room and told
me what a golden opportunity this was to make a plan for the rest of my life. I know he was trying to reach
me somehow, but I felt completely removed from him and traumatized by the whole experience. I regretted
signing myself in and tried to think up ways to open the locked windows. The male nurse handed me a book
of essays written by mentally ill people. I was not able to concentrate very well on their stories, but I was
relieved to find evidence that schizophrenic people actually did something after they got out of the hospital.

Laura: [Oct. 19, 2000]

The first time my son was admitted I cried so hard. I had no choice: either I was going to admit him or the
police would be involved due to the fact that he hit a staff person at his special school. I tried to explain why
I had to take him to the hospital. He thought I just wanted to get rid of him. I told him I love him and that I
always would no matter what. After three days into the hospital I got a call at 11:00 p.m. saying they had to
leather restrain my son and that I could call anytime I wanted. I called all night until finally five hours later
he was out of the restraints. The second time was not as hard as the first time. The second time I saw it in his
eyes and behavior, and I knew I couldn't do anything for him. He needed professional help again.

Planning For Discharge

Reba, mother of Eric:
My son was discharged from the hospital and was accepted in a group home. This was after almost three
years of hospitalization, off and on. I honestly do not know what I would have done without the opportunity
he has been given to participate in a regular day program and with a structured support staff. I can only pray
that he will continue taking his medication and continue his treatment plan.

Chapter 8. Treatment
Medication
Reba, mother of Eric:
Trying to find the most appropriate medication with few side effects has been a real problem to my son.
Sometimes he feels like the doctors do not take his side effects seriously.
 25
Lindsay:
I have been on Zyprexa for a year and a half. It took a while to find the right medication. It has helped a lot
with the paranoia, and my speech is coherent, at least online, but in real life you can tell that I was
hebephrenic. The symptoms still linger and Zyprexa is a very good medication although I don't like the
weight gain it brought on me.

Scott: [Feb. 1, 2000]

Dopamine must be rampant in the brain perhaps by some failure of connection (regulation). I am currently
on Haldol (Generic version - Haloperidol), Neurontin, and Wellbutrin for Depression. I have a diagnosis of
Bipolar (Manic Depression) since the breakdown 16 years ago. Thank God that we have survived all that
time!

Anne-Marie: [Mar. 2000]

I tried six different antipsychotics over the last six years and I am now on an older antipsychotic called
Trilafon. I have very little side-effects and the drug is working really well for me. I also tried the newer
drugs like Risperdal but it did not work for me. I used to also take antidepressants, Anafranil and a sedative
called Seresta, but now there is no longer the need to take them. I am now on Trilafon for two years and it is
still working great.

Ron: [Apr. 2000]

The antipsychotic medications control the symptoms of my illness. The older ones control only the positive
symptoms and also have bad side effects; (tremors, cramps, muscle spasms, etc.) The newer ones are
supposed to control both the positive and negative symptoms, and have fewer side effects. The older ones
I've been on are Chlorpromazine, Trilafon, Stelazine (Trifluoperazine), and Mellaril (as a child). The newer
ones I've been on are Risperidone and Olanzapine (Zyprexa). When I worked as a blacksmith I was on
Stelazine, it worked the best of the older ones for me. It took 2 years on it before I could function well. The
newer one I'm on now is Zyprexa. It seems to be working fine, now that we have the dosage right. It's very
expensive and I needed special authorization to get it and get it paid for. I hope it gives me a new lease on
life. I had bad physical problems with the Risperidone, (liquid stool, tremors, stiffness, poor perceptual
judgement, motor functions, and total lack of sexual ability).

Andy: [Apr. 27, 2000]

I've been on Seroquel, Zyprexa, and Risperdal. All of them caused lots of side effects in me, especially
Zyprexa. Currently I am on a very low dose of Risperdal to try and stop my symptoms while avoiding side
effects.

Anonymous: [Sept. 24, 2000]

Medication has recently changed from the older type of anti-psychotic (chlorpromazine), to the more
 26
esteemed Risperidone (4 mg), which I have found more manageable. I take one pill a day in relation to
taking four x 100 mg (chlorpromazine). My antidepressant is still the same (venlafaxine) x 1, 150 mg a day,
and one injection (depixol), 100 mg per week.

Laura: [Oct. 19, 2000]

My son was put on Risperdal and some antidepressants on top of the medicine he was already on. The doctor
says he is on the maximum amount, 6mg a day.

Supportive Therapy (Club Houses, Psychiatric Day Programs)

Reba, mother of Eric:
Eric has been participating in a day program now for several months. This helps Eric stay on track and gives
him something to do that is structured. I cannot emphasize enough how important it is to be supportive to the
individual who is sick -- for they have a tremendous battle to fight a daily struggle within their own mind
just to survive. I am grateful and appreciative to those in the medical profession that are helping my son in a
positive environment.

ECT
What was your experience with Electroconvulsive Therapy?

Kate: [Feb. 28, 2000]

I had 10 ECT treatments last year because the voices in my head kept telling me I was evil and therefore had
to kill myself. Personally, the worst part of the whole episode was the ECT itself. I have no memory of the
first 6 months of 1999. I can't remember what I did, who I met, anything. I had the ECT as a voluntary
patient, and I signed the consent forms because I believed ECT was a just form of punishment for someone
as evil as myself. No one bothered to ask me why I wanted to have ECT! And no-one has since been much
interested in talking about my memory loss and the frustrations that go along with that. Please, please, please
think very carefully about agreeing to have ECT. It does appear to work wonderfully for some people, but
definitely not for others (like me).

Jeanne: [Aug. 8, 2000]

I had 6 ECT treatments over the course of 2 weeks. I reportedly was cheerful and very functional for 2
weeks after the ECT. Too bad I missed this "break through" because of a loss of memory. After getting out
of the hospital after the ECT, I needed constant care for several weeks as I would forget if I turned on the
stove, or forget where I was or how to get back. After the two weeks of becoming "normal" I became very
suicidal again. I would caution people about the effects of ECT, though maybe the people who it has helped
aren't writing about their experience. Three years later I still have problems with my memory, though it is
difficult to sort out whether this is caused by ECT, the medications or the illness.
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Psychologist
If you have also seen a psychologist during your illness, have you noticed any
difference in the treatment between a psychologist and a psychiatrist?

Scott: [Feb. 1, 2000]

It seems that a psychologist knows how to contemplate my feelings and inject them into real life terms based
on what has happened with me. He also studies my mannerisms, facial expression, body posture, inflections,
etc.

Drug Holiday
Have you ever had a drug holiday, a period when you are off drugs, and if so, what
was the outcome?

Scott: [Feb. 1, 2000]

A total disillusionment of self control. Not making the grade with thought, thoughts running too fast, no
concentration, no organization or very little, I would say 5% at best. Irritability, combustibility, explosion of
reaction verbally, not physically. Now, when faced with a tough problem with an unfamiliar solution, it's
either fight (verbally), or flight (physically). Quite a process to find a way to relax.

Chapter 9. Refusing Medication

Reba, mother of Eric:
When my son takes his medicine, he becomes less symptomatic. He has been in denial for years and
discontinued his medicine on several occasions, which ends in disaster. He goes through cycles where he
will take his medication, participate in appropriate programs and functions much better; then he quits taking
meds and starts his wandering from city to city becoming lost, confused, and homeless.

Ron:
After I went off my anti-psychotic medications a couple of times and got sick, my psychiatrist took away my
driver's licence. Talk about motivation. I was furious at him but I had no choice and went back on my anti-
psychotics. When I was healthy again he reinstated my driver's licence. This method worked far better for
me than the fear of hospitalization. Today I'm still on my meds and am a happy motorist.

Rene: [Sept. 28, 2000]

My father was diagnosed with Schizophrenia and also Manic Depressive Disorder. He often did not want to
take his medications and his symptoms would become worse. Often, my mother had to call the police to
escort him to get help. By that point, he was unmanageable and would not go voluntarily. He often
complained of the side effects of the medications. I think it's terrible how this disease is treated. It is also
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very hard on families of people who have Schizophrenia. People with this illness need ongoing
support. Their families need to understand the disease and effects of the medications. The medication that
my father was on eventually gave him Parkinson's disease, and as a result, he died at age 70. My mother
stayed with him throughout his illness, but it was very sad. I admit that I was angry at the situation, but I did
not understand everything, as we did not have family talks about this.

Laura: [Oct. 19, 2000]

After my son has taken the medicine for a while, he would start to feel better and he felt he shouldn't have to
take it anymore. He always says that he was cured! There has been times that he would hide his pills on me
and say he took them already and then I would find a pile of pills under the dresser.

Chapter 10. Returning Home

The Importance of Work
Reba, mother of Eric:
My son is totally disabled from schizophrenia. However, I feel if his diagnosis had been made sooner, his
case may not have ended up to be this severe. He is an artist and likes to sell his artwork on the street near
his group home. He can make a few extra dollars per month but basically lives on a small amount of
disability. Even though he would love to work for his living, he has accepted the fact that he will not be able
to work in the future, nor will he be able to get married and have a family.

Family Support
Reba, mother of Eric:
Each time I looked for help in my state, I went down a dead-end street. I felt a great deal of frustration when
I realized that my son would receive the medical attention and housing needs from another state. The
distance makes it difficult for me to participate actively in his day program or in group counselling sessions
which would be helpful to him. Financial burdens are overwhelming because I am constantly sending him
things he personally needs. Our phone bills are astronomical but I feel it is important to keep in touch on a
weekly basis and offer my support by phone. The only support I receive is from my son's social workers and
medical team.

Public awareness needs to be raised for victims of mental illness as well as families of those who suffer. This
illness not only affects the patient, but also the family. In addition to the exhaustion one can experience
trying to help our loved one, we also have to find the strength to fight social stigmatism and uneducated,
narrow-minded attitudes. The most informative information I have reviewed has come from this website, for
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which I am very grateful. Reading each person's experience has helped me greatly and to each person,
I am thankful for their contribution.

Laura: [Oct. 19, 2000]

When my son came home, I tried to keep it as calm as possible, but it didn't always turn out that way. My
son had a lot of hatred against me because he felt he didn't need to be there.