Dr. Craig Chepke, Member, Board of Directors, the CURESZ Foundation, Private Practice Psychiatrist and Adjunct Assistant Professor of Psychiatry, University of North Carolina School of Medicine

March 2021 marks a year since the United States declared the COVID-19 pandemic a national emergency, and the healthcare world is still trying to sort out the details. In an instant, telemedicine went from being a niche service to a baseline expectation for healthcare providers in every setting, from large healthcare systems to private practices.

Unlike many other specialists, most psychiatrists don’t require a significant amount of equipment to do our jobs, so one would think that the field would be ideal for transitioning smoothly to telemedicine. However, many psychiatrists did so very begrudgingly— myself included. In almost every facet of my life, I am an avid user of every piece of technology I can get my hands on. However, in my clinical practice, I insisted on face-to-face appointments and handwriting my notes to keep eye contact as much as possible. But desperate times called for desperate measures, so I became a temporary telepsychiatrist overnight. Early on, there were two common concerns I heard from colleagues: that people with schizophrenia would have difficulty using the technology required for telemedicine or that delusions or hallucinations would be too disruptive to appointments.

My experience, however, has been different. On the whole, I’ve found people with schizophrenia to be very comfortable with navigating technology. More troubling has been the so-called “digital divide,” which refers to the fact that not everyone in the country has equal access to fast, stable Internet connections and adequate hardware to take advantage of it. I have also not seen psychosis present a source of problems that would not have been equally challenging if the person was in the same room. However, it can be more difficult for a clinician to assess the scope and severity of psychosis virtually, so I’d recommend patients try to be more proactive with voicing the symptoms they’re experiencing. Many people also find it helpful to make a list of topics they want to discuss ahead of time. Of course, schizophrenia is so much more than just the positive symptoms. I have noticed that some people who have more prominent cognitive symptoms of schizophrenia have been somewhat more distracted. On the other hand, many people with more prominent negative symptoms seem more at ease in our virtual interactions than face-to-face.

Telemedicine has also shown usefulness as a supplement to in-person care rather than a replacement. A dilemma for people who are prescribed Long-Acting Injectable antipsychotics (LAIs) in the pandemic has been that they absolutely require in-person administration. I believe that LAIs are life-saving interventions, so I had to figure out how to continue offering injections while doing my part to keep everyone healthy. Early on, I transitioned people to LAIs that can be injected in the shoulder to allow people to drive-up and receive the injection while remaining in their car. As we gained confidence in our ability to use masks and distancing to reduce infection risk, I started to bring people who need LAIs administered in the hip muscle back in the office to do so. After I administered the injection, we conducted the remainder of the visit virtually to reduce the chance for transmission of the virus.

There have also been clear positives to the widespread usage of telemedicine. The elimination of travel time has made it easier for people to schedule appointments around other obligations. As a result, I’ve been able to work people in more quickly when they need an appointment urgently, people who live far from the office have been able to schedule more frequent meetings, and the number of missed appointments has decreased. Telemedicine has also empowered people to reach out beyond their local geography to seek out specialist care. It’s easier than ever for people who live in rural areas to access treatment or a second opinion from a specialist in schizophrenia across the state or beyond.

They say that necessity is the mother of invention. While the transition’s urgency caused us to get some things wrong, both clinicians and patients adapted quickly. The result has transformed healthcare in a way I don’t see us abandoning. Whatever telepsychiatry ends up looking like, one thing is clear: it is the future of medicine in some form or another.

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Eric Smith, mental health advocate, consultant for Treatment Advocacy Center, and graduate student studying social work

My journey to a successful, productive life was not easy. For years, I struggled with psychosis which did not respond to any medication I tried, though I tried many. Thankfully, I recovered on the underutilized medication clozapine in 2012. Looking back, I doubt I would have ever begun clozapine if not for a program called Assisted Outpatient Treatment (AOT).

AOT is not just a program or a law. I see it as a lifeline to escaping the confines of insanity for many people. AOT involves the combined teamwork of a judge, psychiatrist, social worker, nurse, attorney, and others as part of a treatment team. Exactly who and what comprises an AOT treatment team can vary from one city to another, but my treatment team had all of those people and professions involved. AOT is beneficial for people diagnosed with schizophrenia, schizoaffective disorder, bipolar disorder, and other related disorders.

My AOT treatment team cognitively and behaviorally changed my view of treating mental illness by taking an authentic and active interest in my sanity. They did not treat me like a lost cause, as I had been treated before.

I highlight this point because those of us with severe mental illness are often treated as a lost cause to be swept under the rug on which society lives so that we are out of sight and mind. Truthfully, there were plenty of times where I, too, thought my sanity was a lost cause. I underwent years of failed medication regimens. AOT helped me realize that not only is sanity something I could regain, but also a foundation on which I could build a happy and purposeful life.

No discussion about AOT is complete without mentioning how it intentionally does not criminalize mental illness. The criminal justice system is not designed to treat and remedy matters of mental illness, nor should it be. The fact that AOT relies on civil (non-criminal) court proceedings is essential. Civil AOT hearings are not only different from criminal hearings by name, they are also different in how they look and feel.

Most people have a general idea about what a courtroom looks like, with a judge sitting in an elevated position in a black robe at the front of the room, and places for a plaintiff and a defendant to state their cases. My AOT hearings were nothing like this. The first thing I ran into when showing up for my AOT hearings was a waiting room where I would sit with others who were there for their hearings. In this waiting room were donuts, muffins, orange juice, and other snacks neatly placed out on a table for us to eat and drink at no cost to us. When called upon to take part in the AOT hearings I entered a conference room, not a courtroom. In that conference room was my treatment team, ready to have a civil conversation with me about how I was doing. I know some AOT hearings around the United States are actually held in courtrooms, and I imagine they are effective even if they are in a courtroom. That said, my treatment team purposefully distanced the AOT hearings from looking like a criminal courtroom. That meant the world to me, and it still does.

I believe AOT is a testament to the power of teamwork across various professions, and this multipronged approach makes sense given the complex nature of issues stemming from severe mental illness.

AOT (and clozapine, which I eventually arrived at with thanks to AOT) has afforded me the opportunity to thrive in reality. As a graduate student, I cannot think of a better way to spend my life than helping others of the diagnosed population find happiness and hope. Advocating for AOT is among the best ways to make that happen.

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by Mary Beth De Bord, JD, lawyer, CURESZ Board member and leader of Friendsz (pictured here) and Bethany Yeiser, CURESZ President

One in five people will develop a mental illness at some point in life. High school and college students (approximately age 15-25) have increased risk for developing more serious mental illness including schizophrenia, bipolar disorder, depression and anxiety. Typically, students know very little about these mental illnesses, which are in fact treatable brain disorders, especially with early intervention.

Because high school and college students are at the age of risk, they must be aware that some of their peers will struggle. For example, at a high school with six hundred students, one percent, or about 6/600 will develop schizophrenia and 10/600 with bipolar disorder. A much larger number (up to 200/600) will develop depression and/or anxiety.

When a student suspects that his or her peer may be struggling, where do they begin, what signs should they watch for? What is the best way to help?

The CURESZ Foundation encourages students (as well as their teachers, counselors and other adults in their lives) to apply the principles of H.O.P.E., which stands for Hear, Observe, Process, Engage.

The first step in recognizing if a young person is struggling with a neuropsychiatric disorder, aka, mental illness is to listen. Subtle clues may prove to be very important.

Often, people with schizophrenia say things that may sound illogical. They may be having delusions in the form of persistent false beliefs, such as believing that someone plans to harm them or that they are being watched or that the TV is talking to them or about them. They may also be experiencing hallucinations, hearing voices or seeing things that do not actually exist.

When you sit down with your friend who may be struggling, hearing what they are saying, and showing that you care, can be comforting and can make a big difference in convincing them to seek medical help from a psychiatric physician.

Second, observe your friends’ behavior. Your peers may start to distance and isolate themselves or become extremely agitated. Abnormal changes in mood (depression or irritability) may be an indicator of schizophrenia or bipolar disorder. Withdrawal, lack of interest in fun activities a person used to love and neglecting personal hygiene may be symptoms of depression or schizophrenia.

Third, process. Recovery from severe mental illness is a long journey. As your friend begins treatment, be available talk to him or her about what they are experiencing. Encourage the young person to reach out to a trusted counselor, therapist or physician for appropriate care. You should also report the symptoms to a trusted adult or counselor. Early intervention is key to a successful recovery.

Finally, engage. To the extent you can, provide support to allow your friend to fully engage and embrace a treatment plan which works for them. As your peer engages in support services with a support team, encourage him or her along the journey. Ask if the medication is working well, and be interested in their goals and plans for the future. Having support is essential to your peer’s recovery.

The CURESZ Foundation offers students information that is useful as friends and family practice HOPE.  The foundation offers educational resources about signs and symptoms of schizophrenia, as well as related disorders and comorbidities such as bipolar disorder, anxiety and depression. We also offer information about underutilized and cutting-edge medications for schizophrenia. We highlight individuals who have successfully recovered from schizophrenia and are currently thriving. The CURESZ Foundation website has relevant videos and provides contact information for excellent psychiatrists throughout the country.

If your friend is struggling with unusual behavior due to a psychiatric brain disorder, you can write the CURESZ Foundation to ask for a second opinion from one of our CURESZ physicians.

As you practice the principles of HOPE, we would also encourage you to consider founding a CURESZ on Campus club at your high school, college or university. CURESZ Clubs offer useful information about a wide variety of mental illnesses and their warning signs. They also offer information on career paths in mental health, such as what it takes to become a psychologist, a psychiatrist or nurse practitioner. The Clubs bring in speakers on a regular basis (recovered students, professors, other guests), organize in person events and share the CURESZ Foundation’s mission with peers, teachers, counselors and professors. The Club meetings also provide a safe space for students to convene and share what is going on in their personal lives.

Do not underestimate how much good you can do in the lives of others. Everyone needs friends, especially friends who are empowered through education to recognize the emergence of mental illness and to HOPE. Those struggling with a mental illness tend to isolate themselves and break away from family and friends when they need them the most.

Students should also be aware that if their initial treatment plan is not working, there are other medication options. Young people must proactively work with their doctor to achieve the highest level of recovery possible. Additionally, young people who struggle with brain disorders need to make plans for the future such as returning to school, getting a part-time or full-time job, or volunteering. The goal should always be to rebuild your life. Through friendship, recovery becomes a more achievable goal.

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Bethany Yeiser, CURESZ Foundation President

The onset of psychiatric brain disorders, such as schizophrenia, depression, bipolar disorder, anxiety disorders, eating disorders, and alcohol and drug abuse, are higher during the teens and twenties than at any other phase of life. To help educate students about brain disorders, the CURESZ Foundation (which has education as one of its major missions) organized its initial event for students, Mental Health on Campus, in February 2020 at the University of Cincinnati. In the fall of 2020, CURESZ founded its first CURESZ on Campus Club at the University of Cincinnati. Through our clubs, we hope to educate students and encourage them to seek professional help as well as inspire them to support their friends who are struggling. We aim to equip students to recognize the early warning signs of psychiatric disorders, and know what actions to take.

As a schizophrenia survivor and President of the CURESZ Foundation, I have become aware of many people like myself who have developed psychotic symptoms, dropped out of school or work and became homeless. Their parents contact me, at a loss to know how to proceed. Recently, a mom called me about her son who is a physics PhD candidate in his last year of school. Months before he was supposed to graduate, he fled the university, began living in his car, and refused all contact with his family members.

I wonder, could this physics student’s life have been different if he, or his friends and family members had been educated about the early warning signs of mental illness (i.e. psychiatric brain disorders) and known what to do?

I am passionate about educating students because I had my first psychotic episode while a senior in college. After I lost my scholarship, I

Mental Health on Campus

dropped out and became homeless for the next four years, suffering from delusions and hallucinations.

In 2007, after screaming back at the auditory hallucinations that were taunting me, I was finally arrested and admitted to a psychiatric unit. Eventually, after a difficult struggle, I recovered completely, published a book about my illness and recovery, and now am honored to serve as the President of the CURESZ Foundation.

Looking back, there are so many things I wish I had known prior to my initial psychotic break. I wish I had been educated to recognize the early signs of schizophrenia and see it as a treatable brain disorder. Upon my initial diagnosis of schizophrenia, I wish I had been told that if the usual antipsychotic medications didn’t eliminate the symptoms, clozapine was an effective option. I also wish my doctors had explained to me that if I discontinued my medication when I improved, I might develop treatment-resistance to the same medication that had worked for me, and would need higher and higher doses, which also means more side-effects.

I wonder, if I had been educated about brain disorders while I was in high school or college, would I have been better prepared when schizophrenia disrupted my life?

Lizzie Kozarik, CURESZ on Campus leader, University of Cincinnati

When a student demonstrates behavior which appears to be out of character for him or her, it is important to pay attention to the warning signs and to take action. Out of character behavior could present as a sudden decrease in academic achievement in a once successful student, or social withdrawal in a person who typically enjoys social activities. Not eating or overeating, and neglecting personal hygiene such as showering, may also be warning signs.

In addition to learning about the early warning signs that may start in high school or college, I wish I had been told that there should be no hesitation to seek help for a brain disorder, and that the earlier one receives treatment, the better the response and outcome. I wish my teachers and professors had encouraged students to be compassionate observers as friends to their peers who suffer from psychosis, depression, anxiety or any other type of mental illness.

We encourage you to support the CURESZ Foundation in 2021 as we aspire to reach this vulnerable population with much needed educational information and hope. Even for young people who fall the farthest, as I did over my four years homeless, there can still be hope and a future for those who consent to and actively engage in treatment, just like persons suffering from diabetes, asthma or epilepsy.

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Deborah Fabos

I’m the mother of an adult son who was diagnosed with schizophrenia almost twenty years ago. At the onset of his illness, trying to convince him that he was symptomatic only made things worse. I remember telling him that devils really weren’t coming out of the TV only to find him more distressed and agitated.

For years, I struggled to communicate with my son as he spiraled downward, lacking any insight into his schizophrenia.

Finally, I read Dr. Xavier Amador’s book I Am Not Sick, I Don’t Need Help where he described a badly needed strategy for effective communication with the seriously mentally ill who lack insight. This strategy described in his book is called LEAP.

LEAP stands for Listen, Empathize, Agree and Partner. It is a method for developing trust and cooperation (partnership) with someone who is experiencing psychosis and anosognosia (lack of insight into their illness). Anosognosia is a symptom of a brain disorder and the reason treatment is refused.

One of the main quotes from LEAP says it all, I think. “You do not win on the strength of your argument; you win on the strength of your relationship.” Our usual first response when we encounter psychosis, delusions and paranoia is to “correct” our family member’s perspective. We might try to educate them about their brain disorder and the importance of compliance to medication/treatment. LEAP also states, “Research shows that the symptom of anosognosia is not responsive to treatment and education. Attempts to educate and confront the person only result in anger, alienation, and avoidance of treatment. The ‘usual approach’ not only doesn’t work–it makes matters worse.”

When I started to use the LEAP techniques, I stumbled a lot. Learning to “Listen” as LEAP suggests was different and took some adjusting. But it was well worth it! Our conflicts became less frequent and less intense. I was building trust that reached into his delusions and psychosis even when we didn’t agree. Once I asked him, “Do you think you’re ill?” The reply of course was, “No!” Then I asked, “Why do you take your medication then?” Bracing myself because I was entering into unknown territory, the reply moved me to tears. His reply was, “Because I know you have my best interest at heart. Even when I don’t agree with you.”

Once I started to apply LEAP, I was able to understand his distress better and WE found a way to resolve the problem. When he told me devils were coming out of the TV, we unplugged it. Not all difficulties can be solved by LEAP, but I have found it can protect my relationship with my family member.

By using LEAP, I was also able to learn what my son’s hopes and expectations were for the future. I learned how I could better help him in all phases of treatment, support and goal setting (recovery). LEAP even helped me during the time he became noncompliant with his medication. Although inside I was shaking with anxiety and fear of what could happen if he stayed noncompliant, I did my best to calm myself, and used LEAP. My son agreed to discuss his feelings about his medication and dosage with his psychiatrist (who he also trusts), and they partnered on an adjustment that worked. His “relapse” was minimalized. I have found that, for me and my family, LEAP was the key we needed to unlock trust in our relationship.

Today, LEAP is used worldwide by law enforcement, mental health care workers and family members/caregivers.

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Dr Craig Chepke, Member, Board of Directors, the CURESZ Foundation, Private Practice Psychiatrist and Adjunct Assistant Professor of Psychiatry, University of North Carolina School of Medicine

Why try to improve someone’s life psychiatrically if we let them die from cardiovascular disease 10-20 years earlier than people without serious mental illness? My psychiatry training program maintained that one is “a physician first, and a psychiatrist second.” Therefore, I have increasingly asked myself this question over the past several years. In addition to being a severe brain disease, schizophrenia is also associated with a greater risk of many other physical disorders, referred to as comorbidities. Common comorbidities include obesity, cardiovascular and metabolic disease (e.g., diabetes or high cholesterol), respiratory illnesses, infectious diseases, and many others disorders.

People with schizophrenia have more than double the mortality rate, and the lifespan is reduced by 10-25 years compared to the general population (1). While part of this difference could be due to the much higher risk of suicide (12 to 170 times higher than the general population), the number of excess deaths from cardiovascular disease alone outnumber those resulting from suicide for people with schizophrenia (2,3). Perhaps it’s time to start thinking of comorbidities as an emergency the way we do suicide!

We should also consider that many people with schizophrenia are socioeconomically disadvantaged. This increases the likelihood of having lifestyle risks such as smoking, lack of exercise, and unhealthy diets. They may also lack access to regular preventative medical care due to an overwhelmed medical system, insurance problems, or transportation issues.

This is a powder keg of risk factors and on top of that, most antipsychotic medications have some degree of weight gain or other metabolic problems as potential side effects.

“People living with schizophrenia deserve a life with both
mental stability and good physical health.”

Psychiatrists have a significant challenge in figuring out how to proceed when these complications develop. A common strategy is to switch the person to an antipsychotic medication with a lower risk, such as ziprasidone, lurasidone, cariprazine, or lumateperone. However, the antipsychotic medications that carry the highest risk for these obstacles also have some of the best reputations for efficacy, including clozapine and olanzapine. Antipsychotic medications are usually not interchangeable when it comes to maintaining treatment response, which puts the person at risk of relapse.

Finding the balance between benefits and side effects can be like walking the razor’s edge at times. Both are important, but which one should we prioritize? The National Institute of Mental Health performed a large clinical trial to answer questions like this. The CATIE study took a more “real-world” approach by comparing the length of time people with schizophrenia continued to take the antipsychotic medications they were on. This approach is based on the theory that if someone keeps taking a medication over the long run, the benefits must exceed the drawbacks. People stayed on olanzapine longer than the other antipsychotic medications tested despite having the highest amount of weight and metabolic side effects, presumably because of its superior efficacy (4). CATIE also highlighted the unfortunate lack of medical care for people with schizophrenia. Participants in clinical trials generally get a higher level of care than in the general community, but in the CATIE study, 30% of participants with diabetes, 62% with high blood pressure, and 88% with high cholesterol were not receiving any treatment for these conditions (5).

The saying that “an ounce of prevention is worth a pound of cure” is common for a reason. It’s much harder to lose weight than it is to prevent weight gain from happening, so waiting to react until after weight gain occurs isn’t usually a good strategy. As such, it’s becoming increasingly common for psychiatrists to prescribe metformin (also used in type 2 diabetes) at the start of treatment with an antipsychotic to reduce the risk of weight gain proactively. Similarly, a medication was approved by the FDA in 2021 containing the highly effective antipsychotic olanzapine with a medication that reduces weight gain potential, samidorphan, in a single pill.

It may not be obvious to think of physical health as part of the psychiatric treatment plan, but it’s essential to do so. Getting started may seem overwhelming, so here are some action items to help people with schizophrenia fight back against the physical toll it can take on their body:

1) Talk to your psychiatrist about your physical health and ways to help you support it.

2) Keep track of changes in your weight and size of your pants, as the waist size is a useful predictor of metabolic syndrome.

3) Be sure to have regular checkups with a primary care provider.

People living with schizophrenia deserve a life with both mental stability and good physical health. Let’s make fighting for the best of both worlds your New Year’s Resolution!

References:

1. World Health Organization Mental Disorders Information Sheet. https://www.who.int/mental_health/management/info_sheet.pdf
2. Zaheer, Juveria, et al. “Predictors of suicide at time of diagnosis in schizophrenia spectrum disorder: A 20-year total population study in Ontario, Canada.” Schizophrenia Research (2020).
3. Ösby, Urban, et al. “Mortality and causes of death in schizophrenia in Stockholm county, Sweden.” Schizophrenia research 45.1-2 (2000): 21-28
4. Lieberman, Jeffrey A., et al. “Effectiveness of antipsychotic drugs in patients with chronic schizophrenia.” New England journal of medicine353.12 (2005): 1209-1223.
5. Nasrallah, Henry A., et al. “Low rates of treatment for hypertension, dyslipidemia and diabetes in schizophrenia: data from the CATIE schizophrenia trial sample at baseline.” Schizophrenia research 86.1-3 (2006): 15-22.

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Asenapine is an established treatment for schizophrenia, achieving FDA approval with the brand name Saphris in 2009. Despite having favorable results for some, two factors limited its widespread usage. The body cannot absorb asenapine well when swallowed, so it was given as a dissolving tablet that had to be held under the tongue (“sublingual”) for 10 minutes twice a day. It had an unpleasant taste, and a common side effect was irritation or numbness of the mouth. But a new formulation of asenapine developed by Noven Therapeutics may help overcome those limitations. It is a transdermal patch worn on the skin that’s changed once a day and keeps the amount of medication in the body consistent for all 24 hours.

Some may experience skin irritation from the patch but otherwise, rates of potential side effects are similar to the sublingual form, and may include motor abnormalities and weight or metabolic changes.

The FDA approved transdermal asenapine on 10/11/19.

The post Treatment Advances in Schizophrenia: Secuado (transdermal asenapine) appeared first on CURESZ Foundation.

Stephen Rush, MD, Associate Professor of Clinical Psychiatry

According to the National Institutes of Mental Health (NIMH) in 2017, 10.6 million adults in the United States had serious thoughts of committing suicide, 2.8 million made suicide plans, 1.3 million attempted suicide, and 47,173 died by suicide.  The World Health Organization estimates that 1 million people across the word die by suicide each year at a rate of 3 people every 2 minutes.

Death by suicide in those with schizophrenia occurs at a rate much higher than that of the general population, sometimes reported as high as 13,000 per 100,000 people with this disorder compared to 13 per 100,000 in the general population.  It is the largest cause of premature death in this population.  The risk of death by suicide is highest in the first 2 years after the onset of schizophrenia and occurs more often in males, those with co-occurring depression and substance use disorders and those with a history of suicide attempts.  Often, the focus of treatment in schizophrenia is reduction in hallucinations and delusions, but clearly, an important part of any treatment plan involves suicide prevention strategies.

Prevention of suicide in schizophrenia requires breaking down barriers around the stigma of mental illness and bringing discussions of this topic into the light, whether with clinicians, family members, or support groups.  This is a challenging task given the stigma that already exists, even amongst those affected by this brain disorder.  It has been reported that most people who commit suicide give definite warnings about their intentions and often do so in ample time before an attempt.  Additionally, a majority of people who are suicidal are ambivalent about death.  This contradicts stigma that suicide occurs in people who never discuss it, without warning and who are intent on ending their lives.  The high risk of suicide in persons with schizophrenia mandates that we must discuss this topic openly, without bias and without fear of negative consequences.  Increased awareness of suicidal thinking is, in fact, associated with decreasing the risk of completed suicide.

Universal prevention strategies must include dissemination of accurate information through media outlets and dispelling inaccurate and biased information that marginalizes individuals with a predilection toward suicide. Restricted access to highly lethal means of suicide (such as guns) has been shown  to reduce the incidence of suicide and requires that, as a society, we advocate for laws and regulations that protect our vulnerable citizens, even in the face of sharp criticism from opposition.

Selective strategies must target those at risk for suicide and require broad screening of these populations and having frank and open discussions about suicide.  We must educate and train all members of society to manage issues of suicide in the same vein as interventions such as cardiopulmonary resuscitation (CPR), a widely known treatment for cardiac arrest with education provided in many sectors of society not limited to health care professionals.  Imagine if raising suicide awareness is established as a requirement in the same way various occupations and activities require CPR training and what this could do to reduce completed suicide.

Individual strategies involving patients with schizophrenia must include family, community and physician involvement.  Psychiatrists must be educated about the clear benefits of clozapine in reducing suicide risk in those with schizophrenia (Meltzer et al, 2003) as studies demonstrate this treatment is widely underutilized.  Community collaboration, in which multidisciplinary teams are available to provide a range of supports for those with schizophrenia, such as Assertive Community Treatment (ACT) should be standard of care and more easily accessible to all segments of society.  Family education, social skills training and cognitive behavioral treatments, were they easily accessible to all patients, regardless of insurance and ability to pay, would similarly have a significant impact on suicide prevention.

In summary, we must, as a society, recognize the high risk of suicide among those in our communities living with schizophrenia as a first step toward prevention.  We must reduce stigma surrounding this brain disorder and suicide and be aware of risk factors.  We must advocate for legislation and healthcare reform.  Perhaps most of all, we must act as a community to surround this sect of our population with support and increase access to effective care.

REFERENCES

Association of timely outpatient mental health services for youths after psychiatric hospitalization with risk of death by suicide. Fontanella et al; JAMA Netw Open. 2020;3(8):e2012887.

Clozapine treatment for suicidality in schizophrenia: International Suicide Prevention Trial (InterSePT). Meltzer et al; International Suicide Prevention Trial Study Group. Arch Gen Psychiatry. 2003. Jan;60(1):82-91

Predictors of suicide at time of diagnosis in schizophrenia spectrum disorder: A 20-year total population study in Ontario, Canada. Zaheer et al (In Press); Schizophr Res. https://doi.org/10.1016/j.schres.2020.04.025

Preventing Suicide. Sher, L.  QJM.  2004. Oct;97(10): 677-680.

Awareness of Disorder and Suicide Risk in the Treatment of Schizophrenia: Results of the International Suicide Prevention Trial. Bourgeois M et al.  Am. J Psychiatry.  2004.  161:1494-1496

Managing Suicide Risk in Patients with Schizophrenia.  Kasckow J, Felmet K and Zisook S.  CNS Drugs.  2011;25(2): 129-143

Suicide. (2020, September).  Retrieved from https://www.nimh.nih.gov/health/statistics/suicide.shtml#part_154969

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Rebecca Schaper,
Author of The Light in His Soul: Lessons from My Brother’s Schizophrenia

In 1977, Call Richmond suddenly disappeared from his home in Greenville, South Carolina. Call was in his late twenties at the time. Since college, he had slowly become more reclusive and depressed. His family heard from him occasionally on holidays such as Thanksgiving and Christmas when he would phone. His sister Rebecca was especially fond of Call and tried unsuccessfully to find him.

In 1997, after being missing for twenty years, Call arrived unannounced at Rebecca’s mother-in-law’s house, saying simply “I’m Call.” Rebecca became Call’s primary caregiver. When Rebecca first met her brother after twenty years, she could tell something was very wrong. He was hallucinating and unable to carry on a normal, coherent conversation with Rebecca. Rebecca took Call to see a psychiatrist, and he was diagnosed with schizophrenia.

Call’s road to recovery was not easy.  His psychiatrist initially prescribed Haldol, which left him with a flat affect and unmotivated. Rebecca persevered to find better options for her brother. She frequently drove two hours from Atlanta to Greenville to see Call. She helped him work with a doctor to finally find an effective medication with fewer side effects. Rebecca also took Call to get a haircut, to be fitted for dentures and to buy new clothes. She helped Call find a social worker who met regularly with him and helped him find his own apartment. His social worker taught him how to clean, cook, and buy groceries.

During Call’s recovery, Call shared his memories of the onset of his illness. Just a few months before Call was supposed to graduate from Presbyterian College, he dropped out of school and moved into a dirty cabin in the woods of Greenville, South Carolina, alone. Wanting no one to know how far he had fallen, he got on a train and traveled across America, working various odd jobs all over the country.

Through Call’s recovery process, Rebecca learned of the history of schizophrenia and depression in her family.  Although her family seemed “picture perfect” (her mother Mary had been a debutante, they lived in a lovely home and their father was well employed at a textile firm), her mother struggled with a psychiatric illness.

Rebecca remembered spending the night at a friend’s house when she was young. At the time Rebecca was unaware that her mother Mary suffered from a psychiatric illness. Her parents had kept Mary’s psychiatric illness a secret. Mary was also abusing medications and drinking to cope. Mary suffered from extreme anxiety, and soon began to experience hallucinations. Rebecca remembers her mother talking with imaginary people on her back porch. Mary had two suicide attempts at the beginning of her marriage and in her 40’s. She was committed four times to a local psychiatric ward, Marshall Pickens. Mary died of an overdose in 1977 when Rebecca was 23.

In 2006, Call became very depressed and relapsed. His constant need for Rebecca’s time was difficult on her family. At the time, Rebecca’s daughter was also in a facility undergoing treatment for anorexia. It was tough for Rebecca to divide her attention between her brother and her daughter.

Call passed away in 2012 of colon cancer at 61 years old. In 2007, Rebecca asked him what advice he would offer to someone who had his illness. He said “Go see a psychiatrist and get started on medication.” Call had finally learned that the key to his recovery was participating in treatment, and for many years, he was able to live a happy, meaningful life.

Today, Rebecca’s daughter Kim is recovered and a thriving entrepreneur helping other women empower themselves with self-image, balancing hormones and body issues. Rebecca is grateful that she was able to support and assist in Call and Kim’s recoveries.  She is also thankful that others in her family provided support to her so that she could provide the caregiving necessary to Call and Kim.  Rebecca’s daughter Lauren, Lauren’s husband, Gabe, and Rebecca’s husband, Jim were especially supportive during the challenging times with Call and Kim.

Her hope is that those who suffer from mental illness will find caregivers to support them in their recovery. She hopes that by sharing her story, others may find resources to recover from schizophrenia and that caregivers will find a path to balance the need to care for those struggling with schizophrenia with the need to care for themselves.

The post The Light in His Soul: Lessons from My Brother’s Schizophrenia appeared first on CURESZ Foundation.

Carol Aiken, Probate Commissioner, 31st Judicial Circuit, State of Missouri

CURESZ interviewed Judge Carol Aiken from Greene County, Missouri. Over the years, Judge Aiken has seen many cases involving people with schizophrenia. She has noticed a general shift toward deinstitutionalization, and a lessening of the stigma.

Greetings from Missouri! I have served as a judge in the probate court in Greene County, Missouri for the past 23 years. In Missouri, the probate court handles adult guardianships cases. Many of my cases involve people with a schizophrenia diagnosis so I have become very familiar with the area’s mental health resources. Springfield, the county seat for Greene County, is a typical Midwestern city of about 175,000 residents and is widely respected for its many programs for the mentally ill.

In the past two decades that I have been on the bench, there has been an enormous shift away from institutionalization of individuals with a mental illness. Virtually all of the state hospitals have closed with an emphasis on independent supported living options and outpatient programs.

In Greene County, we are fortunate to have very progressive mental health services. The main provider is Burrell Behavioral Health. It provides numerous programs, including outpatient treatment, independent living options, and community activities. There are apartments designed for residents with mental health diagnoses with counselors and case managers on site. Recently, a retired physician funded the development of a tiny home community called Eden Village. It has provided stable housing for some of Springfield’s chronically homeless, almost all of whom carry a mental health diagnosis.

There has also been an emphasis on reducing the number of people who are involuntarily detained in a hospital’s psychiatric unit. The county, along with Burrell Behavioral Health, is funding a new rapid access mental health facility. The goal is to provide law enforcement and first responders with an around-the-clock mental health care center to take people to instead of transporting them to the hospital or jail. Unfortunately, the state has recently made cuts to budgets for treatment programs and housing assistance for the mentally ill. I fear that these cuts will greatly affect housing options for individuals with schizophrenia and other mental illnesses.

The guardianship laws in Missouri have also been recently amended to require that judges place as few restrictions as possible on a person who is in need of a guardian. Historically, when a person is placed under guardianship, they lose many of their personal rights. This includes the right to determine where they will live, the right to vote, marry, drive and enter into a contract. The emphasis now is to very narrowly carve out the restrictions placed on an individual.

This change is of great benefit for those with schizophrenia. It greatly reduces the stigma attached to a guardianship proceeding. The court can tailor the guardian’s powers to be used only when the mentally ill individual needs hospitalization and refuses to go. This situation usually arises when the person stops taking medication. The guardian then has the authority to admit the individual to the hospital to receive the needed assistance. With such restrictions in place, guardianships can be viewed in a much more positive light, to be used only in emergency situations.

I am hopeful in the coming new decade that great strides will be made not only in the treatment for individuals with schizophrenia but also in the services and assistance provided for them.

Carol Aiken
Probate Commissioner
31^st Judicial Circuit
State of Missouri

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