Hope you have a good weekend everybody!
Hope you have a good weekend everybody!
I have been sick for three long days. Not from the flu, although it knocked me out just as much as a flu would. Not from the heartbreak of losing a relationship. I know how much that hurts, and this pain is similar, but my relationships are fine.
I have not lost anything or done anything wrong, but my brain is filled with thoughts of what a total mess I am in life.
Not one thing has happened to create this sickness. There are no obvious triggers. No problems. No diet changes or weather changes. Nothing has happened.
I have been sick for three long days from my bipolar disorder.
I did everything I could to get out of it. I used the ideas in my books. I asked for help. I changed locations. I let others know that my brain wasn't working. I got upset. I tried to be nice to myself. I did it all!
It took three days for my brain to get back on track. Three long days of frustration and pain. That is our life with this illness. I still kept going. I did the work that had to be done and put off the work that had a few days leeway. I simply had to wait it out.
It's so painful. It's so hard. It's so unfair. It is all of these things.
I can either accept it — this is my life — or give up and not do all I can to reach my goals.
I choose to accept it and keep going. My brain lies to me. It is not a reliable source — it tells me things about myself and my work that are not true.
What is your plan for when your bipolar is active and your brain is lying?
Julie A. Fast is the author of Loving Someone with Bipolar Disorder, Take Charge of Bipolar Disorder, Get it Done When You’re Depressed and The Health Cards Treatment System for Bipolar Disorder. She writes for Bp Magazine and was the original consultant for the Claire Danes character on Homeland. Julie lives with bipolar disorder and a psychotic disorder. Her official diagnosis is schizoaffective disorder. Her goal is to find stability in daily life. Please visit www.JulieFast.com for more information on her work.
My wonderful, heavenly angel son, Shane Watkins (39), was shot by Lawrence County Deputy Steven Moody because he thought all people with mental illness were dangerous.
My son called 911 saying I threatened to kill him and his dog. I told 911, “We have no guns in the house and please tell the cop not to kill my son.”
When the cop got out of his truck, he had his gun in his hand. I was standing in the doorway. My son was standing by my car. I begged the cop, “Please don’t kill my son.” Not even five seconds later, he shot my son three times in the chest. One bullet went into the hood of my car. Then he pointed the gun at me and threatened to kill me, too. March 19, 2015.
The police report stated that I said my son attacked me but he didn't. The police report said my son attacked the cop but he didn't. I'm still praying for justice and still waiting to get another court date. The last one was cancelled.
I just came to the cemetery to put flowers and Alabama memorabilia on Shane’s grave. Since he loved steak, I’ll eat a steak in honor of his life.
My love and prayers for all the mothers who have lost a child. Thank you for your support and for sharing your losses.
Which way’s forward?
Hope you have a good weekend everybody!
I hope I can find some comfort in knowing I’m not alone.
My son, Joey, was just sent to Patton State Mental Hospital after spending seven months in San Diego County jail for trying to break into a car. (He’d been living in transient camps in San Diego County.) He makes $640 a month on SSI, not nearly enough to cover rent, basic needs, and food. He refuses to live at home because "I am an adult,” and he doesn’t want to be a burden.
At the jail, he was found incompetent to stand trial. I was reluctant about Patton but hopeful that maybe he would receive some long-term help. And maybe, just maybe, he would receive the care and education he needs to maneuver this world as a person with mental illness, and to be at peace with the wonderfully different person he is.
Come to find out, the only care and assistance Joey will receive, beyond medication, will be how to participate in court proceedings — not to yell out during court, not to speak unless spoken to — and how to understand the charges against him . That’s it. No life skills, no education on his condition or how to recognize triggers, nothing. My son sleeps all day and doesn’t have to participate in the court school, but that will make his stay longer.
My hopes were quickly deflated and we’ll be in the same boat as prior to this arrest and many others. Joey will go to court, be found guilty of another felony, released on time served (it’s already been close to a year for a felony that, at the discretion of the court, could have been reduced to a misdemeanor because his attempt to break into the car failed). He will be released, again, to the streets. There is literally no where else for him to go — except home with us which he refuses to do.
A vicious cycle. I’m prepared for Joey’s death, which is the worst and most helpless feeling. I don’t know what the answer is. I do know, for me, it’s not over until he’s at peace, healthy, and living the best life possible for him. He deserves at least that.
On Sunday, I drove the backroads to California State Prison, Folsom. I’d missed my February visit with Travis because I was sick, and I was eager to see him. The day was wondrous — blue sky, inspirational clouds, bright green grasses growing on every available patch of soil. Water poured, with force, over the dam at Folsom Lake. I tried to not think about climate change and to enjoy the earth as it was presenting, gloriously, before my eyes.
As I pulled into the prison parking lot, I reminded myself of the routine — fill out a visitor’s pass, replenish the prison credit card for the vending machines, check in at the desk, show my driver’s license, get my right wrist stamped, sit down, and wait for Travis’s name to be called.
As I waited, I read a chart on the wall. Not Allowed: sunglasses, electronics and cell phones, scarves and gloves, hats and beanies, underwire bras, skinny jeans and leggings, jewelry, blue or green clothing. An officer appeared and called out “Travis Christian.”
I stepped to the door to enter the scanning room. “You can’t come in,” the guard said to me. “You’re wearing blue.” I was wearing blue — navy blue slacks and a navy jacket. The prisoners wear light blue shirts. “Light blue,” I protested. “Sorry, no blue,” came the reply. “You’ll have to leave and change clothes.”
Oh, boy. “I drove from Lincoln. I can’t go all the way home and back again.”
“We have a friendship center across the parking lot. The white building. You can go there and get a change of clothes.”
Thought I was becoming a pro at this prison-visiting thing. Guess not. I walked across the parking lot to a small building with a wood ramp leading to the front door. Inside, a woman sat at a desk. “You need clothes.” I signed in. Ten people had already signed in ahead of me because they needed clothes. A man came out of a back room and handed me black sweatpants and a black top with IZOD printed on its long sleeves. “We close at 2 p.m.”
Back across the parking lot in my new prison attire. One other woman joined me on the shuttle bus. After she departed, the driver said, “She’s pissed. She’s had to change clothes three times this morning.”
Okay. So things could be worse.
At 12:15 p.m., Travis entered the visiting room. We hugged. “This visit’s gotten screwed up,” I said. I explained the clothing fiasco. “I’ll have to leave earlier than usual to get back and pick up my clothes. Let’s get you something to eat.”
Travis selected pre-packaged quesadillas from the vending machine and a coffee drink. “I’m really glad to see you,” he said. “I was worried about you.” We talked quickly because there was lots to catch up on. Rooster, the previous cellie, was gone. Lawrence, the new cellie, “is a really nice guy. I’m taking a college history course, by mail. I got an A on my first paper. I was having trouble concentrating, but I’m feeling much better since my doctor changed my meds. She lowered my lithium and increased my thyroid prescription. My mom came last week and we had a really good visit. A friend here loves bridge. I told him you sent me bridge information. He wants to borrow it. I got some mail.”
I told Travis he looked good, better than he did at my last visit. He asked about my book. I brought him up to date. “I’m hoping to get it out there for Mother’s Day. It’s a learning curve and an adventure. We’ll see where it goes.”
Time to leave. Back across the parking lot to change into my own clothes. A woman walked with me. She wore black sweatpants and a black top. “It appears you shop where I shop,” I said. She visits her husband every week and, today, the guard declared that her dress was “too short. Your husband may be respectful, but we never know about the other guys. We don’t want any situations, you know.”
To return to his cell from the visiting area, Travis walks between buildings. As I left, I’d said, “When you’re outside, go slowly. It’s a beautiful day.”
“I will,” Travis said. “I will.”
You can read more about my visits with Travis. They’re listed in the Archives on the right.
Travis looks forward to receiving mail. You can write to him at this address:
California State Prison-Sacramento
P.O. Box 290066
Represa, CA 95671
Hope you have a good weekend everybody!
We traveled, yet again, to another state for our son’s court appearance on Tuesday of this past week. Adam has spent five months in the county jail. We’ve traveled the five-and-a-half-hour distance from our home eight times in order to support him in his desire to represent himself in court. Most of his court dates were postponed at the last minute.
At long last, he got his requested bench trial before the judge. Of course, our son's defense was scattered and unfocused, and he failed miserably. The judge ordered him to be released to our care, with mental health treatment. That is about the best outcome we could hope for, considering the broken mental health system.
It’s winter. We don’t want Adam released to the streets. However, he’ll have a six-month probationary period, during which time he can be returned to serve a two-and-a-half-year jail term on charges of harassment by phone, and breaking a no-contact order.
This is our third child who’s been diagnosed with serious mental illness. Our two other children are deceased by suicide. My husband and I are tired. For now, I’m thankful Adam is alive. Thanks to those of you who are prayer warriors in this unfolding, seemingly never-ending drama. Only our strong faith keeps us moving forward. We have very low expectations for effective care through the medical or legal community. We’re not trying to be negative. We’re just well versed in the ineffectiveness of the system.
Hope you have a good weekend everybody!
Many, in the mental illness community, support SARDAA’s (Schizophrenia and Related Disorders Alliance of America) efforts to have schizophrenia reclassified as a neurological disorder. Read their background information and arguments. If you agree, click on the link below to submit your support of their letter. Thanks so much. Dede
May 21, 2018
Dr. Elinore McCance-Katz
Assistant Secretary for Mental Health and Substance Use
Interdepartmental Serious Mental Illness Coordinating Committee
Substance Abuse and Mental Health Services Administration
5600 Fishers Lane
Rockville, MD 20857
Dear Dr. McCance-Katz,
On behalf of the Schizophrenia and Related Disorders Alliance of America (SARDAA), we are writing to applaud the Interdepartmental Serious Mental Illness Coordinating Committee (ISMICC) on your work advancing the understanding and delivery of services to those with serious mental illness (SMI) and serious emotional disturbance (SED). In light of the scope of work outlined in your charter, we would like to submit our recommendations for the reclassification of Schizophrenia as a neurological disorder. One place to start is including schizophrenia in the implementation of the National Neurological Conditions Surveillance System with the 21st Century Cures Act (P.L. 114-255).
Founded a decade ago, the Schizophrenia and Related Disorders Alliance of America promotes improvement in lives affected by schizophrenia-related brain illnesses (mental illnesses involving psychosis). SARDAA promotes hope and recovery through support programs, education, collaboration, and advocacy. Our vision is that every person living with schizophrenia-related brain illness receives respect, appropriate treatment and an opportunity to live a meaningful and satisfying life in a compassionate community free of discrimination.
What is Schizophrenia?
According to current DSM-5 criteria, the diagnosis of Schizophrenia requires two of the following symptoms, with at least one from the first three:
Disorganized or catatonic behavior
Negative symptoms (e.g. diminished emotional expression or motivation)
Although the precise causes and mechanisms underlying schizophrenia continue to be actively researched, there is scientific consensus that the illness is a brain-based, highly heritable illness. There is also overwhelming evidence that schizophrenia is a neurodevelopmental disorder. (1,2) with disease processes commencing early in neurodevelopment and manifesting as subtle neurologic and behavioral abnormalities long before overt DSM-defined illness onset.
A landmark research study identified 108 genes associated with risk for schizophrenia, including those relating to dopamine receptors, glutamate transmission, synaptic plasticity and the immune system. (3) The prevailing hypotheses concerning the pathophysiology of schizophrenia include the dysregulation of the dopamine, glutamate and GABA neurotransmitter systems. Synaptic pruning — a critical process that refines neural circuits during neurodevelopment — is perturbed, in particular during adolescence, consistent with the typical onset of illness during this period and into young adulthood. (4,5)
Importantly, such disturbances in pruning have recently been linked to the Major Histocompatibility Complex (MHC), by far the strongest of the 108 risk gene associations in the aforementioned study. Specifically, certain variants of complement component 4 (C4) of the MHC have been found to lead to excessive pruning, (6) thereby providing a mechanistic link between genetic basis for schizophrenia and the observed neurobiological findings in the illness (for commentary, see https://www.youtube.com/watch?v=s0y4equOTLg).
Pruning anomalies are significant enough to show up as decreased grey matter volume in structural MRI studies of schizophrenia. (7) A myriad of functional MRI and electrophysiologic studies have shown disturbances in brain and cognitive functioning. (8,9) Thus, while much work remains in fully elucidating the origins and mechanisms of schizophrenia, there is consensus and overwhelming evidence of the genetic and brain basis for the illness.
What is the Personal and Public Health Impact of Schizophrenia?
Schizophrenia can be found in approximately 1.1% of the world’s population, regardless of racial, ethnic or economic background. Approximately 3.5 million people in the United States are diagnosed with schizophrenia and it is one of the leading causes of disability. Three-quarters of persons with schizophrenia develop the illness between 16 and 25 years of age, thus derailing affected individuals during this critical period in successfully reaching important educational, vocational and social milestones.
Unfortunately, the delays from the illness onset to receiving treatment is typically very long, ranging from 22 to 150 weeks, (10) with longer durations of untreated psychosis associated with poorer clinical and functional outcomes. (11,12) After the first episode, psychosis relapse rates are very high, up to 82% in the first 5 years. (13) At five years following the first episode of psychosis, only 13.7% achieve both symptom remission and adequate social functioning. (14)
The long-term consequences of this chronic illness can be devastating. Eleven percent of the homeless population have a diagnosis of schizophrenia, with higher rates in younger persons (13% for 18–30 years old; 21% for 31–40 years old), women (twice the rate of men) and the chronically homeless (18%), with slightly less than half not receiving treatment. (15) Individuals with schizophrenia are prone to premature death, with life expectancy 14.5 years shorter than the general population. (16) Sadly, 40% of this is due to suicide, (17) with 5% lifetime completed suicide rates in schizophrenia, (18) most being shortly following illness onset, with suicide attempts at 25-50%. (19,20) Whether patients receive timely, appropriate treatment has great consequences.
Treatment and other economic costs due to schizophrenia are enormous, estimated at $156 billion annually, with the largest
What is the Stigma Associated with Schizophrenia?
Patients with psychosis are frequently exposed to negative stereotypes, stigma and social exclusion associated with their diagnosis. Unfortunately, patients and their families often engage in self-stigmatization, blaming themselves for the disorder and wondering what they could have done differently to prevent the illness. Understanding schizophrenia and other psychotic illnesses as neurological disorders would help the community at large in viewing these illnesses as they do other medical illnesses such as cancer or diabetes.
To reduce stigma and increase understanding, SARDAA initiated the Hearing Voices of Support initiative. During Schizophrenia Awareness week in 2017, SARDAA spearheaded an interactive public art installation in New York City, entitled Psychosis: Changing Perceptions Through Art & Science. This exhibit, in coordination with creative agencies The Bloc Communication Partners, Cavort and Glowing Bulbs, Inc., allowed participants to step into “cones of light” where they experienced the associated symptoms of schizophrenia (lights, auditory effects, fog, etc.) while experiencing a personal story including suggestions of what is helpful.
Congressman John Culberson (R-TX) and Congresswoman Eddie Bernice Johnson (D-TX) are co-sponsoring a similar, smaller-scale installation in the first-floor foyer of the Rayburn House Building Offices June 27-29, 2018. The Capitol Hill installation aims to promote better understanding of schizophrenia among Members of Congress and congressional staffers; unfortunately, the larger obstacle of stigma for those with schizophrenia still remains. On June 28, 2018 in Rayburn 2103, SARDAA will present a Scientific Legislative Briefing presenting neurological evidence of schizophrenia and anosognosia.
Hiding in Plain Sight: Is Schizophrenia Not Already a Neurological Illness/Disease?
Some may ask — why is this even a question? Depending on the audience, it may not actually be a question. The defining feature of schizophrenia is psychosis, manifested primarily by delusions and hallucinations. Psychosis is not only associated with schizophrenia but also dementia, Parkinson’s disease, stroke, brain tumors, and the use of drugs or alcohol. With such clear associations with brain-based processes, it would seem clear that schizophrenia-related psychosis is also rooted in the brain. In the mental health treatment context, it is a no-brainer, so to speak — of course it is a brain disease! It is no more a question that it arises from disturbances in brain function than one questions whether Parkinson’s disease or epilepsy arises from the brain.
In the clinic, or even more poignantly, in a psychiatric inpatient unit or emergency room, a patient with severe auditory hallucinations or delusions is excused from any immediate responsibility or culpability for their symptoms. The symptoms are not simply a ‘behavioral problem’ — rather, any clinician with experience treating schizophrenia will recognize how a patient’s thoughts, emotions and behavior have been hijacked by a process that is beyond their control. Historically, the ‘hijacker’ may have been assumed to be the result of a demon or spirit (c.f. epilepsy which, historically, was attributed to demonic possession), or poor parenting; in the modern day, there is no question that it is a neurological process.
Stepping from the clinic and into the lab, one will find assumptions regarding the biological basis of schizophrenia even more firmly ensconced. We are well beyond what are now considered quaint notions of the ‘schizophrenogenic mother’ or psychosis as a social construction, and questions regarding the biological basis of schizophrenia have long since moved from ‘if’ to ‘how’. A plethora of genetic, post-mortem and neuroimaging studies have demonstrated clear evidence of the biological underpinnings. Perhaps one of the more simple, compelling facts that undergirds the biology argument is heritability and twin concordance: if one of an identical twin pair has schizophrenia, the other will have a 50% chance of also having schizophrenia, even if raised in a different environment. This number is comparable to that for Alzheimer’s disease and greater than that for Parkinson’s disease. (24,25,26)
If schizophrenia having a neurological basis is such an obvious given for clinicians and scientists — people that are ‘in the know’ — why does this question remain in the general public? The answer is likely to be a complex mix of factors that includes a lack of proper education of the public and historical inertia in the systems of care that cater to the schizophrenia population (e.g.psychiatry vs. neurology), as well as how this care is paid for (e.g. structure of reimbursement codes by Centers for Medicare and Medicaid Services).
Whatever the reasons for the disconnect between established clinical/scientific knowledge regarding schizophrenia and the inadequacies in the systems of care for the illness, there is utmost urgency in bridging this gap. As outlined above, for many individuals with schizophrenia it is literally a matter of life and death. We believe that re-classifying schizophrenia formally as a neurological disease will be an important first step for this urgent priority.
Why Should Schizophrenia Be Included in the National Neurological Conditions Surveillance System (NNCSS)?
We have general prevalence estimates indicating that 1.2% of all Americans – roughly 3.2 million people — have schizophrenia from the National Institute of Mental Health (NIMH). Beyond that broad approximation, we just do not know much more about this patient population. In particular, if we turn to public mental health agencies, who provide the vast majority of publicly financed inpatient hospital and community-based services for people living with schizophrenia, the lack of basic data is striking. For example, baseline demographic data on gender, average age of onset, race, religious affiliation, ethnic background and income are often completely absent. That lack of information often extends to the realm of service delivery. State mental health agencies often struggle to identify the specific type of care provided, the penetration rate for mental health and related support services in a given geographic area, the intensity of service delivery for each patient with schizophrenia and, most importantly, verifiable clinical outcomes. An amendment to the National Neurological Diseases Surveillance System could begin to help answer these baseline questions.
A comparison of schizophrenia to Alzheimer’s disease and Parkinson’s disease — two disorders that unambiguously have a neurological basis — quickly makes a compelling case for schizophrenia finding its proper diagnostic home in the neurological disorders (see Table below). All three disorders share multiple features including significant brain and cognitive deterioration, diagnostic approach, types of treatment, having a strong genetic basis, clearly speaking to the consideration of schizophrenia as a neurological disorder (interestingly, schizophrenia appears more heritable than Parkinson’s disease).
Where these disorders depart company, unfortunately, is the personal and social impact for diagnosed individuals. With a diagnosis of Alzheimer’s or Parkinson’s disease, the clinical paradigm of providing timely and appropriate care is robustly in place. With schizophrenia, a similar paradigm is far from guaranteed, especially in the longer term, with striking rates of patients being untreated, homeless and incarcerated. Thus, while schizophrenia appears to legitimately deserve consideration as a neurological disorder based on clinical and scientific grounds, the lack of recognition of this reality has sadly been associated with much suffering, debilitation and public health cost.
We believe that the inclusion of schizophrenia in the NNCSS could be an important first step towards understanding schizophrenia better, reducing stigma in the illness, and re-invigorating our orientation towards timely and appropriate treatment as well as making incarceration and homelessness unacceptable outcomes for schizophrenia. We appreciate the chance to provide our recommendations to you on this matter. We are happy to provide any additional information or comments that you may require.
Linda Stalters, MSN, APRN (ret)
Chief Executive Officer & Founder
Schizophrenia And Related Disorders Alliance of America
Raymond Cho, M.D., M.Sc.
Chair of the Board of Directors
Schizophrenia And Related Disorders Alliance of America
Click on the link below to sign on to support this letter. Thanks so much.