One Young Man’s Rocky Road to Recovery

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Stephen Maguire
Stephen Maguire

Overcoming the challenge of living with symptoms of schizophrenia and bipolar disorder – a mix seen more often in men

From The Quarterly, Fall 2011

Stephen Maguire, a doctoral student in mathematics at the University of Illinois at Urbana Champaign, began noticing a while back that sometimes on his way home from class the streets would seem unnaturally empty. A feeling of menace would come over him and he would start walking in “a snake-like pattern to make it hard for someone trying to shoot me.” He knew these thoughts were irrational─no one was out to shoot him─but they kept coming. Last spring, he found himself back in the Menninger Clinic, a psychiatric hospital in Houston, Texas, where 16 years earlier, at the age of 16, he had been diagnosed with schizoaffective disorder.

As the name implies, schizoaffective disorder combines symptoms of schizophrenia and mood disorder ─ either depression or bipolar disorder (cycles of depression and mania). Depression is more common in women. Stephen’s schizophrenia symptoms are combined with bipolar disorder, as appears to be more frequently the case with men. One of the problems with schizoaffective disorder is difficulty – leading to delay -- in diagnosis, as happened to Stephen. His condition was further complicated by obsessive-compulsive disorder and severe anxiety.

Co-morbidity in mental illness (having more than one illness at the same time) is more common than generally recognized. NARSAD Grantee Keming Gao, M.D., Ph.D., has found it to be the rule rather than the exception, worsening symptoms and complicating diagnosis and treatment. Stephen’s parents remember that as a little boy, Stephen displayed rigid rituals typical of OCD and expressed fears of abandonment. Although brought up without formal religion, he obsessed about sin and his soul, and remembers feeling convinced that “if I didn’t say this prayer, or tap this space three times, my mom and dad would die.”

Before the relapse that sent him back to Menninger, Stephen had been stabilized on a cocktail of drugs composed of the antipsychotic risperidone, the mood stabilizer topiramate, and clomipramine, an antidepressant effective in treating OCD. When the risperidone stopped working, he went through six agonizing months of trial and error with other drugs. Recently, he was prescribed paliperidone (trade name Invega), a newer form of risperidone, and has been working with a specialist in Chicago with the hopes that new medication and treatment will work and keep the psychosis at bay. Jim Maguire, Stephen’s father, has been staying with Stephen in Chicago to offer his son support and guidance through this challenging process. Jim says, “My presence in Stephen's apartment has helped to keep the voices away, but even so he has heard the voices a few times even with me here.”

In addition to taking his medications Stephen‘s psychologist uses cognitive behavioral therapy (CBT), a talk-therapy treatment through which people are guided to identify and correct entrenched misperceptions. “What CBT does,” Stephen says, “is attack the fears that grind us down.” A recent Foundation-funded pilot study conducted by NARSAD Grantee Aaron Beck, M.D. (the “father of CBT”) and colleagues showed success for the first time in using the technique with very low-functioning schizophrenia patients (it has been traditionally used to treat depression).

Stephen and his family have been traveling an up-and-down road for a long time. Growing up in Boise, Idaho, Stephen was “a kid who never quite fit in,” says his mother, Betty Hayzlett. “Some people thought it was because he was so bright. For years we told ourselves he was just different.”

To help himself stay better, in addition to taking his medications Stephen works with a psychologist who uses cognitive behavioral therapy (CBT)

But teachers started to complain that he was disruptive, couldn’t sit still and made noises. Stephen’s father, an educator himself, remembers that as a boy, he too “misbehaved and got into trouble with teachers,” so he wasn’t too alarmed when Stephen began showing similar behaviors. But the additional problems that soon followed were red flags for Stephen’s parents. Stephen started to get into fights and lash out at kids who made fun of him. “I can’t tell you how many times we’d get admonishing letters from his schools,” Betty says.

Thinking Stephen might have attention deficit hyperactivity disorder, they tried Ritalin to no avail. When Stephen became seriously depressed, he was prescribed Paxil, which made him irrationally angry. Then, with Prozac, Betty says, “he went totally manic,” which often happens when people with bipolar disorder are given antidepressants without mood stabilizers. After a brief fling with the up-side of mania (feeling euphoric and omnipotent) Stephen crashed into psychosis and was taken to the local hospital where he yanked a faucet out of the wall.

As his psychotic episodes waxed and waned, Stephen went from treatment to treatment. He experienced akathisia, a condition of being exhausted but unable to sleep. Betty remembers him telling her that his brain felt “like a bombed-out landscape. We would sit at his bedside at night and reassure him that the landscape would bloom again.”

“When we view the mentally ill as ‘other’, we’re not realizing it could be any one of us.” ─ Stephen Maguire

Then came the day Jim walked into the kitchen and found Stephen holding a knife to his belly. “At that point, frantic, we started calling everyone we knew for advice, and one smart person told us to take him to Menninger.” Of that “terrible time” Betty remembers that on the plane to Topeka, Kansas, Stephen, fearing he might become uncontrollable, had his parents rig ropes through his sleeves, so that if the ropes were pulled, his jacket could serve as an improvised straitjacket.

Yet, in and around the terrible times, Stephen also had good, meaningful times that came in the form of mentor teachers and friends. Big for his age in eighth grade, he was recruited to the football team and found role models in his coaches and friends among teammates. Once Stephen was stabilized on his meds, he attended a Quaker summer camp which Betty says, “helped him feel like a normal person again.”  Perhaps the most important influence for the now mathematics PhD candidate was the high school teacher who sparked his love of math and inspired him with his wacky sense of humor. One of the negative side effects of antipsychotic medication is weight gain and consequent risk for cardiovascular illness. Stephen has fought a long battle with weight; his 6-foot-plus frame at one time carried 300 pounds. “I’d stick with a diet for a week or two,” he says, “then I’d have that cookie or piece of fudge and I’d say, ‘it’s all over. I can’t do it.’” But with incredible strength and inner determination, he soon found that he could do it, and has recently lost a remarkable 90 pounds.

Regarding his weight struggles and ultimate success, Stephen reflects, “What I learned that helped me was to see relapse not as the end, but as part of the process.” Stephen says, he is trying to see the process in terms of mental illness, as well.

“Betty, Stephen’s mother believes one of his strengths is that he never gives up─“He just picks up the pieces and goes on.”

Betty believes one of Stephen’s strengths is that he never gives up. “He just picks up the pieces and goes on.” And, rather than embittering him, his illness has inclined him to act with kindness and concern for others that are suffering. “Stephen talks to them, listens to their stories and helps them. He invited a homeless man to sleep on the floor of his apartment one winter night. Not necessarily a safe thing to do, but Stephen is a sweet, compassionate man.”  

For his part, Stephen is keenly aware that the love and understanding he could always count on from his family is not available to many with mental illness. He says, “When we view the mentally ill as ‘other’, we’re not realizing it could be any one of us.”
 
Today, the family’s support for Stephen remains steadfast despite distance, separation and Betty and Jim’s divorce a few years ago. Still in Boise, Betty is active as an artist and as a professional with the state’s department of education, applying her training in special education to help guide the design of programs for students with special needs. Jim, a retired English professor, now lives in Colorado. Stephen’s sister, Emily, is a professor of literature at Northwestern University. They are all, always, a phone call away when Stephen needs them.

The family is equally united in their support for the Brain & Behavior Research Foundation. Partly to “better understand Stephen’s illness,” says Jim, and because “research just seemed the logical way to achieve advances in the treatment of mental illness. As time goes by, I’m more convinced of it than ever.”

Back in Urbana, Stephen is determined to complete his preliminary exam and write his dissertation to earn his Ph.D., a daunting prospect about which he says, “I had a good breakthrough the other day. Now I need to write it up and check it with my advisor.” With manifest determination, he says “I’m trying to keep up hope that I can do it.”

Article comments

How can I get my son into long-term treatment for the same disorder? He is delusional and totally disconnected from reality. Very sad. I'm encountering so much red-tape when I attempt to get him into treatment. Seems all they'll do is hospitalize him for a week, stabilize him, and release him. He lost his job, his home, everything. He's homeless and on the streets of Washington, DC. What a sad sad situation. Who can help him?

NAMI Family to Family Education Program
http://www.nami.org/Template.cfm?Section=Family-to-Family&Template=/Tagg...

I think taking this course may help you, and you could google Treatment Advocacy Center and learn more about your states laws, if he's been a danger to himself or others, or gravely disabled (one explanation of gravely disabled I've been told - not able to dress himself, feed himself, or go to the bathroom) then the hospital should not be able to put him out. Consider trying to get guardianship so you can be more involved in his treatment and consider getting SSI or SSDi for him, if he has insurance that will help hospitals keep him longer. He needs medication & talk therapy desperately. There's Cognitive Behavior Therapy, Dialectal Behavior Therapy, Cognitive Enhancement Therapy that can help him immensely, I wish you lot's of happy days in the future with your son. I wish I knew where mine is, I've not seen him for over two years now. Mental illness is such a horror.

Call NIMH in Maryland. They have free research programs most of the time and will pay him a little for testing they do and will help with medications that work. Extended stay if it is something their interested in as research

What an inspiring account of Stephen's recovery process. He is an awesome young man! I pray for the day when medical research will provide the breakthrough needed to help courageous people such as Stephen live a less stressful life.

my son had is histamine levels and pyroles checked by blood and now we know it is natural vitamins and minerals he needs. Check into this or no one will ever get better . I am serious, my son is making progress finally.

My son was diagnosed as paranoid skitsophrenic. Where to you g to get histamine and pyroles levels checked?

Well, I always think, "I wish to God I could get off this medicine and onto something more TRULY helpful". I do believe that these drugs are combined and synthetic and that the doctors can do good if they first find what's good for the target's body.

A complementary, natural option is Ayurvedic Medicine. See if you could find a referral through the Ayurvedic Institute in Albuquerque, New Mexico.

how inspiring

can you elaborate on why the measured histamine levels in the blood? What are pyroles? thanks.

my son is 22, he has been diagnosed paranoid dillusional bipolar schizophrenia we cannot find help they gave sample medication after it run out we had a prescription well to get it filled it was 789.00 we cannot afford it.... we need help he is really a good kid what can we do please call this cell phone number if you can help with any information 770-238-6196

I was in similar situation like you are in five years ago. I helped my son to apply for SSI. Since the diagnosis is serious mental illness causing disability, he stared receive SSI since then. From there, he became eligible for medical assistance, which has been helping paying for his meds.

Hello, I had this very same problem. Medications were becoming harder to pay for. My son was diagnosed at 16and a half with negative schizophrenia. He is disabled and on Medicaid and SSI. He gets a check every month and his medicaid pays for his meds. I had problems with medicaid waiting on my insurance to pay first and they'd pay what was left over. However because he has a disability, medicaid is the primary insurance to pay for his meds. Now they run about $4-$10 a month. Please check and see if he qualifies for it, if not, call Social Security Administration for help on getting relief.

I'm bipolar/schizoaffective/schizotypal. Anyway I haven't got a clear diagnosis in 10 years, but I get really weird or depressed or manic.

Shop around pharmacies. I can get zyprexa cheap at Costco (no membership required) but it's $400 at Walgreens. Trazodone is $4 at Kroger but $16 at Costco. It's a bit of a pain but better than the alternative.

And you're in the 770. Georgia (The Metro specifically) has a state funded mental health program called Viewpoint Health. The resources are stretched thin but the prescriptions are $5 if you're uninsured and they have residency programs. I can't vouch for their hospitals. I was in Peachford once when I was insured and it's a pit.

Sorry I'm not comfortable calling a stranger on the internet. Hope you see this.

Wonderful and inspiring! Stephen, Betty, Jim and Emily: Thank you. When you stand by your loved one you stand by all of us affected in this way.

Have you tried contacted the drug company to see if they have any programs available for you.

Get Dr. Aaron Beck's book, "Feeling Good". Cognitive therapy helped me. It is not only meds that help. You must combine them with some form of therapy. Attack the illness from all directions. Exercise. Diet. Sleep. Meds. Talk. Balance. Love.

i am a clinical nutritionist and all these ppl with mental illness need histamine levels checked and pyrole level by a urine test. Usually they have a very high requirement for B6 and zinc.

Can you please send me an email on how it's possible that nutritious substances should replace regular schizophrenic medications? I really want to understand it completely. nathank1979@yahoo.com Thank you. Also, please refer me to further reading on how to recover completely. Perfect!

Pauline, I decided to become an RD because of my experience using supplements with my schizophrenic son. Your comment on routine testing for nutritional deficiencies is a breath of fresh air. Where can I find like minded nutritionists and physicians?

thank you for this site and info. Also for the remarks. I will check this out for my grandson diagnosed a year ago at age 16.

Great advise from "bipolar Jim". I suggest that anyone who is living with mental illness should connect with a local NAMI chapter (find it online). Also,it's really important to have a program in place to continue therapy after a hospital stay. My daughter is schizoaffective.

It is sad to learn that the diagnosis was not that effective in Stephen earlier. But, proper treatment can do wonders always. It is the duty of the family to support such person through their difficult times and to make sure that they make it back into the society.

I'm gonna quit math grad school and do research on dolphins.

I've got schizoaffective disorder, and I recently had a breakdown as I was not taking Meds, since 2005 ... I'm now on paliperidone and it has put a bit of weight on me, which I hate and can't seem to lose, even though on a ketonogenic diet.... I've just started lamotrigine and am not suicidal anymore... This illness is hell, you normal people are so lucky

To anyone who cannot afford medicine for family members. Please try rxhelper.com & also call the manufacturer of the drugs needed they might be able to help. I do not know much about Obama Care but they are suppose to be able to help in people with illnesses that make them unable to work? Itis worth a try! Good luck everybody and please don't give up on you family members. Remember you are all they have. God Bless you all.

It is these stories of recovery that gives me so much hope. My son right now is going through a relapse. I am praying he gets the right combination of meds to help him. Most importantly , he needs to accept his illness and want to get better.

My son was diagnosed a year ago with schizophrenia, a absolute shock to all of us, so sad and complicated. He is fairly well, he is on meds and an orthomolecular regime. Please everybody look for it, based on supplements, food allergy...... takes tome but has very good results. Please look for all the work Dr. Abram Hoffer did, it is hopeful. We cannot give up. I pray for all the souls in this difficult situation, and for their families. God help us and protect them.

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