Tag / schizophrenia

person wearing eyemask that says delusions
by karentwinem

The Collected Schizophrenias

Esme Weijun Wang has published a remarkable collection of essays in “The Collected Schizophrenias” that present the experience of severe, persistent mental illness through the eyes of a high-functioning person/patient.

It’s harrowing to read if you have a loved one on the schizophrenia spectrum, no matter what their level of functioning. It gave me nightmares, but also insight. I’m glad I read it. I would caution against reading it at bedtime.

Ms. Wang has been diagnosed with schizoaffective disorder, post-traumatic stress disorder and Lyme disease. She writes about her experiences with those illnesses as well as the societal issues that affect people with mental illness. And her writing is excellent, expressive and vivid.

Her ability to function is beyond extraordinary. It’s a gift from God for the rest of us. She is happily married to a man who understands her condition and is supportive. She has worked at Stanford University in the Department of Psychology as a lab manager. And the chapter “Yale Will Not Save You” covers her experiences as a student there.

She gives a view of what is actually happening to our loved ones that we would not ordinarily have. So I am grateful. But, again, I advise that this is a hard book to read when you have a loved one who is suffering from delusions and hallucinations. She makes the experience so vivid.

brain
by karentwinem

Caregiver’s Guide to Brain Basics

Mental illnesses are brain disorders. Trying to understand the “why” behind an illness or the “how” behind medication requires caregivers to know some detail about how the brain works. For example: What’s a neurotransmitter? What are synapses? And what’s the difference between serotonin and dopamine?

This basic overview, which answers those questions, comes from material on the National Institute of Mental Health’s website. The site contains lots of information to answer your questions about the complexities of mental illness.

NIMH research shows that mental illnesses can be related to changes in the anatomy, physiology and chemistry of the nervous system. When the brain malfunctions, symptoms of mental illness start to appear.

Neurons are the basic working unit of the brain and nervous system, each enclosed by a cell membrane. These highly specialized cells conduct messages. Each neuron has three main parts:

  • A cell body with a nucleus (containing DNA and information the cells needs for growth and repair) and cytoplasm, the substance filling the cell where all the chemicals and small structures named cell organelles reside.
  • Dendrites that branch off from the cell body and are the neuron’s point of contact for receiving chemical and electrical signals (called impulses) from other nearby neurons.
  • Axon that send impulses and extend from the cell body to meet and deliver impulses to another neuron.

Synapses are tiny gaps between neurons where the impulses or messages move from one neuron to the other as chemical or electrical signals.

The brain continues to mature at least until a person is in his 20s. As scientists learn more about brain development, they can see what goes wrong when a person develops a mental illness. One of the mysteries of schizophrenia, for example, is why it often occurs for the first time when a person is in his late teens or early 20s. Many believe scientists will find the secret as they learn more the processes in the brain at that time.

What can go wrong in the brain?

Every cell contains a complete set of DNA, with all the information inherited from our ancestors. As we grow, we create new cells, each with a copy of the DNA. Sometimes the copying process goes wrong, resulting in a gene mutation.

Scientists also study epigenetics, which looks at how environmental factors, such as sleep, diet and stress, can influence our genes. Unlike gene mutations, epigenetic changes don’t change the DNA code. They affect how a gene turns on or off to produce a specific protein.

The role of neurotransmitters

All that we do depends on neurons communicating with each other through electrical impulses and chemical signals. Neurons activate with small differences in electrical charges, called action potentials. The ions (atoms with unbalanced charges) concentrate across the cell membrane and travel very quickly along the axon. (It’s a bit like dominoes falling.)

When the action potential gets to the end of the axon, most neurons release a neurotransmitter, or a chemical message, that crosses the synapse and binds to receptors in the next neuron’s dendrites. So neurotransmitters are key to sending chemical messages between neurons. In mental illness and other conditions like Parkinson’s disease, this process doesn’t work correctly.

Important neurotransmitters include:

  • Serotonin controls functions including mood, appetite and sleep. People with depression usually have lower levels of serotonin. Some medications that treat depression block the recycling, or reuptake, of serotonin by the sending neuron. So more serotonin stays in the synapse for the receiving neuron to obtain. This medication, called selective serotonin reuptake inhibitor (or SSRI) causes more normal mood functioning.
  • Dopamine controls movement and aids the flow of information to the front of the brain, where thought and emotion take place. Low levels of dopamine can result in Parkinson’s disease, which affects the person’s ability to move and causes tremors, shaking and stiffness. Some research suggested that having too little dopamine in the thinking and feelings sections of the brain could play a role in schizophrenia and attention deficit hyperactivity disorder.
  • Glutamate is the most common neurotransmitter. When it is releases, the chances that the neuron will fire increase. So it enhances the electrical flow among brain cells. It also may be involved in learning and memory. Problems in making or using glutamate have been linked in autism, obsessive compulsive disorder, schizophrenia and depression.

Regions of the brain

Many neurons working together form a circuit. And many circuits working together form specialized brain systems. Research into the causes of mental illness tend to focus on these regions:

  • Amygdala activates the “fight-or-flight” response to confront or flee from a situation. Scientists are studying the amygdala’s involvement in anxiety disorders, including post-traumatic stress disorder and phobias.
  • Prefrontal cortex is where the brain’s executive functions are. These include judgment, decision making and problem solving. The prefrontal cortex also works in short-term memory and retrieves long-term memory. It helps to control the amygdala during stressful events. Research shows the people with post-traumatic stress disorder and attention deficit hyperactivity disorder have reduced activity in the prefrontal cortex.
  • Anterior cingulate cortex has many roles, including controlling blood pressure and heart rate. It also helps us respond when we sense a mistake, feel motivated, stay focused on a task and manage emotional reactions. Reduced activity or damage in this area is linked to attention deficit hyperactivity disorder, schizophrenia and depression.
  • Hippocampus helps create and file memories. When it is damaged, the person can’t create new memories. However, the person can still remember past events and learned skills, as well as carry on a conversation, because those activities are in different parts of the brain. The hippocampus may be involved in mood disorders through its control of a major mood circuit called the hypothalamic-pituitary-adrenal axis.

No one expects caregivers to become brain scientists, but having a general understanding of the brain will help when learning about medicines and research. The more knowledge we have, the better.

a dead person with a COVID toe tag
by karentwinem

Stigma at Its Worst: Schizophrenia and COVID

I am furious about this.

Do you know what the second highest risk factor for dying from COVID is? The highest is old age. The second highest is having a diagnosis of schizophrenia.

This was first reported much earlier in the pandemic. I heard about it. I even mentioned it to an Ohio State University friend who used to head up my city’s health department. But scientists seem to be repeatedly surprised by it. And the government has done basically nothing about it.

Now it’s Year 3, and it’s news on NPR????

If the second highest risk factor for COVID deaths were health disease or lung disease or diabetes, do you think something would have been done to reach out to those folks? Of course. So why was there no effort to help people with schizophrenia?

People with schizophrenia were left off the priority list for help in my state, Ohio, and many others. My loved one with a schizophrenia diagnosis had to wait until people his age were allowed to get vaccines.

NPR interviewed Katlyn Nemani, a neuropsychiatrist and researcher at New York University. She described the initial reaction to the data showing that people with schizophrenia were three times more likely to die from COVID than the general population. It was disbelief.

“They said it must be because people with schizophrenia are already worse off health-wise, or because they have trouble accessing health care,” she said. That turned out to be wrong.

Studies from countries with free universal health care … the United Kingdom, Denmark, Israel, South Korea and so on … came in, also showing that people with schizophrenia were two to five times more likely to die from COVID.

Yet, the CDC didn’t add schizophrenia to the list of high-risk conditions until people began getting booster shots in October 2022. Other countries, like England, Germany and Denmark, put people with schizophrenia on the priority lists for vaccines at the beginning.

Nemani told NPR that this discovery could be good for people with schizophrenia. She said it may mean that the badly understood illness has a component in the immune system or elsewhere in the body. It could lead to new understanding and new treatments … for those with schizophrenia who are still alive, that is.

My own guess? It’s stigma. Far too many people think that the lives of people with schizophrenia do not matter. If they die from COVID, so what?

Schizophrenia is tough enough without the stigma. It affects 24 million people in the world, including 2.8 million in the United States.

This is barbaric. It’s time to fight for people to see the disease as a disease, not a disqualifying condition for living a good life. I am furious. I am sickened. I am sad.

by karentwinem

Dealing With Delusions and Hallucinations

Handling the Symptoms of Mental Illness

Note: The information is from NAMI, Mental Health America, “When Someone You Love has a Mental Illness” by Rebecca Woolis,  “The Complete Family Guide to Schizophrenia” by Dr. Kim T. Mueser and Susan Gingerich, and the Palo Alto Medical Foundation. It also reflects what I have learned through personal experience.

Some questions that I have heard in our support group include:

  • “What do I say when she says someone on television is sending her secret messages?”
  • “What do I do when he gets the locks changed because he thinks the FBI is trying to get into our house?”
  • “What do I do when he disassembles the pipes to find out where the voices are coming from?”

All these questions are related to delusions and hallucinations, which are symptoms of schizophrenia, bipolar disorder (in some cases) and other forms of mental illness.

Three factors that can influence symptoms are inadequate medication, substance abuse, and high levels of stress. About half the people with schizophrenia have symptoms most or all the time, even with medication. Symptoms also can be signs of relapse coming.

Even if your loved one doesn’t have these symptoms, you may be called on to give advice at some point.  Of course, we always point people to the experts.  But it can be hard to get solid advice from a visit to a psychiatrist or to talk to a social worker. So I’m providing the information that I have collected and used in real-world situations as support.

Responding to Delusions and Hallucinations

People vary in their sensitivity about their delusions or hallucinations.  Previous medical history is a fairly good predictor of this. Some signs that a hallucination is taking place include when your loved one is:

  • Talking to themselves as if responding to questions or comments, but not in a conversational way, such as: “Where did I put my purse?”
  • Staring into space, or being distracted or preoccupied.
  • Laughing for no apparent reason.
  • Appearing to see something that you can’t see.

Hallucinations and delusions often start out as benign, but can become more troubling over time.

People can learn to deal with hallucinations through therapy (including cognitive behavioral therapy), medication, ignoring the hallucination, telling the voices to leave them alone or playing music loudly. Shifting attention to music or television can help.  Working toward acceptance through prayer also helps.

Principles to Keep in Mind

When you are dealing with a loved one who seems delusional or may be having auditory or visual hallucinations, there are some basic principles to keep in mind.

While the things they say that they see, hear or believe are not apparent to you and may not make sense, they are very real to that person. They actually hear voices and see images.  They believe the things they are telling you. Do not dismiss or minimize the impact of this. Do not get into an argument about whether the voices are real.

Research shows that confronting people about their delusions may result in an initial decrease of belief in them, followed by a rebound that makes the belief in the delusion stronger.  This discredits you. If you are forced to take a stand on this situation, just say that you know the experience is true for them.

People, particularly those who have been in treatment for some time, may not be entirely convinced that the delusion or hallucination is true.  They know that this can be a symptom of their illness.  If they check with you to see if what they are seeing or hearing is true, you can tell them that it is likely that this is a trick that their mind is playing or whatever term is comfortable for them.

Respond to the Emotional State

A variety of emotional states accompany delusions and hallucinations, ranging from pleasure to terror. It’s more important to respond to the emotional state you detect than to the content of the delusion or hallucination.  Use listening skills like paraphrasing and asking clarifying questions to reflect what you hear. Ask: “What can I do to help you feel safe?”

You can ask if the person is seeing or hearing something. Try to get enough information to determine how they are feeling and focus on that.

Do not make fun of the person or try to have a lengthy conversation about the content of the hallucination.

Keep in mind that your statements may be confusing to the person as well.  If a voice is saying that you are going to kill him, and you are saying everything is fine.  You see the problem.

This is the first of a series on handling the symptoms of mental illness with your loved one. Next time: responding to agitation and hypomania. As always, if you can get advice from the medical team treating your loved one, use that advice instead.

tired black woman touching head and looking down
by karentwinem

Relapse Prevention: Know the Warning Signs

This month is Mental Health Awareness Month. Some of us are aware of mental illness every waking hour because we have a loved one dealing with it. We dread relapses. To help, I’ve collected information from NAMI, Mental Health America and my own reading/experience.

Recognizing the Early Warning Signs

Mental illness, especially bipolar disorder, schizophrenia and clinical depression, is usually episodic. The symptoms vary over time. When your loved one experiences another episode, it is commonly called a relapse.

Please note: Persistent symptoms that continue despite the stabilization of the illness are not signs of a relapse, but are treatment-resistant symptoms.  If the symptoms get worse, it’s a relapse.

Before the relapse, people often experience changes in their feelings, thoughts and behaviors. These are early warning signs. Studies indicate between 50% and 70% of people experience early warning signs over a period of one to four weeks before a relapse.

Looking for early warning signs allows you to start working with your loved one and his treatment providers to minimize the setback. Because you are the most frequent contact with your loved one, you are the one who sees the warning signs. The ill person will not be able to see them.  This blog post explains why.

Common Warning Signs

Each person has their own specific signs or “relapse signature.” But some warning signs are common, including:

  • Feelings of tension, anxiousness or worries.
  • More irritability.
  • Increased sleep disturbance (hearing them up in the night).
  • Depression.
  • Social withdrawal (more extreme, not even leaving his room to eat).
  • Concentration problems (taking longer to do tasks, having trouble finishing tasks, having trouble following a conversation or TV show).
  • Decreasing or stopping medication or treatment (refusing to go to the case manager or doctor, skipping the vocational program).
  • Eating less or eating more.
  • Excessively high or low energy.
  • Loss of interest in doing things.
  • Loss of interest in the way he or she looks / poor hygiene.
  • Being afraid of “going crazy.”
  • Becoming excessive in religious practices.
  • Feeling bothered by thoughts that will not go away.
  • Feeling overwhelmed by demands.
  • Expressing worries about physical problems.

Most common relapse indicators for schizophrenia:

  • Restless or unsettled sleep.
  • Nervousness or tension.
  • Having a hard time concentrating.
  • Isolation.
  • Feeling irritable.
  • Having trouble taking care of routine things.
  • A lack of energy.
  • Feeling sad or depressed.
  • Feeling confused.
  • A change in appetite.

Most common relapse indicators for bipolar disorder:

  • Disturbed or lack of sleep.
  • Talking quickly and more often than usual.
  • Acting reckless.
  • Feeling very tired.
  • Feeling very depressed.

An Off Day or the Start of a Relapse?

Everyone can have an off day. You can feel down in the dumps, with no energy. Or you can seem a little manic.  If a person has had mental health problems, it’s important to consider whether they are having an off day or starting a relapse.

Early warning signs are:

  • A cluster of changes.
  • Happening together.
  • Lasting over a period of time.
  • Gradually getting worse.
  • Following the same pattern as before.

Your Loved One’s Relapse Signature

Think about the last time your loved one got worse. If you keep a journal, look at what you wrote. It helps to think about:

  • What was the time of year?
  • Did your loved one say how they were feeling physically?
  • How was the mood?  The level of concentration?
  • Did any unusual changes in behavior take place in the weeks before the last relapse?
  • Did your relative do things that seemed “out of character” before the last relapse?
  • Have the same behaviors preceded other relapses?

Thinking about what was happening in the person’s life when you start to notice these changes can help too. 

Next time we’ll talk about what to do when your loved one shows signs of relapse.