Tardive Dyskinesia (TD) is a side effect of taking antipsychotic medication. It’s a movement disorder that can appear months, years, even decades after starting to take antipsychotic medication. It’s estimated that 20-50% of people with depression, schizophrenia, bipolar disorder or schizoaffective disorder taking antipsychotics, particularly first generation, will develop TD.

Signs and symptoms include:
• repetitive jerking movements of the arms or legs
• trunk and hip rocking, jerking or thrusting
• rapid eye blinking
• Tongue rolling, or darting in or out of the mouth
• lip smacking. pursing or puckering,
• jaw clenching or grimacing
• twisting or rhythmic movement in the fingers or toes

We know that taking older “first generation” antipsychotics places someone at greater risk. Other risk factors include:
• being a woman
• being over age 55
• having diabetes
• having a substance use disorder (including alcoholism)

While TD can’t be prevented, it’s important to identify it early. It’s recommended that people be screened every six months or at least every year using what’s called “The Abnormal Involuntary Movement Scale.” Be sure to note which symptoms you are experiencing, when the symptoms began to appear, how
frequent they are, and how they impact your daily routine.

If you or a loved one begins showing symptoms talk to your doctor right away – but do not abruptly stop taking the antipsychotic. Often a doctor will have the person take less of the antipsychotic medication or switch to a different medication. There are some medications that have been approved by the FDA to
address the symptoms of Tardive Dyskinesia (e.g., valbenazine, deutetrabenazine). Ask your doctor about them. Mild benefits have also been noted for taking gingko biloba and vitamin E.

Most people who develop TD will find that it is mild and goes away. The number of patients who develop severe or irreversible TD is quite low, although sometimes TD can be disabling. TD can make people feel self-conscious or embarrassed about the involuntary movements.

On Thursday, July 15 from 7-8 p.m., the NAMI Ramsey Book Club will be discussing the book Miss Hazel and the Rosa Parks League by Jonathan Odell. The discussion will be led by Kay King, Community Educator at NAMI Minnesota. 

Here are some discussion questions to consider prior to the meeting. You can download them here. Learn more and register at our Book Club page.

1. What is the author’s academic/occupational background? How might that have influenced one of the themes of this book: mental illness?
2. A common misconception about mental illness is that people who live with a mental illness can “snap out of it” or “pull themselves up by their own bootstraps" (to get better).  Without mental health education, the public sometimes views a person living with mental illness as lazy, oppositional or weak. Perhaps, they think that the person didn’t pray enough or that they can stop their depression, anxiety symptoms or drinking through positive thinking or happy thoughts.  These viewpoints are still held today by some. Those beliefs were also held in the era in which the book is set. 
   1. Floyd (Hazel’s husband) was the poster child for the power of positive thinking. What role did his philosophy play in Hazel and Floyd courtship/early marriage? Contrast that with its effect later in their marriage after the death of their son?
   2. This passage is from the end of Chapter 27. Floyd mused “If only Hazel got it. When you can control your thoughts, you control your emotions. No need for hospitals and pills and such. But no, some people refused to put out the mental courage it took.”
3. We don’t know what causes mental illness. We know environment, genetics, biology, brain chemistry, life experiences and trauma can be factors. The present theory is that some of us are born with a predisposition and something puts it into motion (a second hit). That trigger could be something like trauma, poverty, deaths in the family, war, losses, other illnesses, birth of a child, lack of sunlight, major long and short-term life stresses, etc.
   1. Hazel was diagnosed with a mental illness and hospitalized. What life experiences did Hazel experience leading up to her acute symptoms and then hospitalization?
   2. What is a co-occurring disorder?
4. Mental illnesses have an early onset. Fifty percent of people who will experience signs and symptoms of a mental illness in their life time, will experience them by age 14. That figure rises to 75% by age 24. Anxiety disorders are the most common of the mental illnesses. The average age of onset for anxiety disorders is 11.
   1. There are multiple references to Hazel’s anxiety. Can you share some of the passages?
5. What is it like to be a family member of a person who lives with a mental illness?  How did his mother’s illnesses affect Johnny?  How did Hazel’s illnesses affect Floyd (her husband)?
6. Hope plays a large part in a person’s recovery from mental illness. At the end of Chapter 32, Miss Pearl talks to Hazel about “dignity.” That conversation causes Hazel to say, “It was dignity! Not silliness. Not stupidity. Not worthless and ugly and helpless and hopeless and crazy and bad, bad, bad.” How did Miss Pearl’s encouragement and reframing change things for Hazel?  
7. There are cultural differences in how people from different backgrounds view mental illness. The Hmong culture views mental illness differently than the Somali culture. The Black culture views mental illness differently than white Americans descended from western European culture.
   1. After Johnny expressed anxiety about going to school, Vida wondered, “How could a boy get lost in his own house?"  Vida also remarked, “What kind of mother would let that happen (Johnny lost as a babe in the woods). Vida answered herself “a white one.” What is Vida’s view of mental illness?  
8. Having purpose (paid job, volunteer work, raising children, going to school) is an evidenced based practice for helping people managing a mental illness, recover.
   1. Hazel learned to drive early in their marriage and returned to driving during her recovery after hospitalization. What role did driving play for her and later how did it become part of a bigger purpose? 
9. Sometimes when people are experiencing the acute signs and symptoms of a mental illness they lack insight. During that period they might not be able to step back and perceive that they need medical help. Those that love them are frustrated that they can’t “make them get help.”  Our laws protect individual rights.
10. At the end of chapter 39 Floyd says, “Do you want me to send you back to Whitfield (the mental health hospital)? You know I could have you committed again.” What other communication/support strategies could be used instead?  
11. On average, it takes 10 years for a person experiencing mental illness signs and symptoms to get professional help. The primary reason for this delay in seeking help is stigma and discrimination.
    1. What are some examples/passages that demonstrate stigma and discrimination?
12. Here are thought starters for future classroom or book club discussions.  They are not directly related to mental illness but isn’t this book rich in items to discuss?
    1. Sheriff Billy Dean, Hazel and Hazel’s son Johnny, although quite different characters, share some characteristics in common.  Compare and contrast. Example: the items in the desk drawer and the trinkets buried under the porch.
    2. What are some of your favorite dialogue lines from the book?

Two of Kay’s favorite passages are what Billy Dean said about Delia, “The woman could have fought the whole Civil War and never reloaded twice.” 
A second favorite line is what Vida says to Hazel when Hazel suggests a friendship between the two of them, “That makes me your maid, not your friend. You get to pick me as a friend and I ain’t got no say about it.”

1. If you were to choose either Vida or Hazel as a mother, which would you choose?
2. What do you imagine will become of young Johnny (Hazel’s son)?

Dear Mayor Martin and City Council Members:

On behalf of NAMI Ramsey County (National Alliance on Mental Illness), I am contacting you in strong support of your proposed ordinance on flavored tobacco. The NAMI Ramsey board believes that since flavored-tobacco encourages some people to smoke, banning it will help many people, including people with mental illnesses.

People with a mental illness have a high rate of smoking and once they begin they have a harder time quitting. According to NAMI, in America, 44.3% of all cigarettes are consumed by individuals who live with mental illnesses and/or substance abuse disorders. People with schizophrenia are three to four times
as likely to smoke as the general population.

Smoking is known to cause heart disease, stroke and lung disease, among other medical problems. Many antipsychotic medications cause an increased risk of heart disease, so it's important that individuals living with a mental illness quit smoking.

Every year, smoking kills about 200,000 people who live with mental illnesses. Also, smoking increases the breakdown of medicines in the body, so smokers often need to take higher doses to get the same results as someone who does not smoke. If a smoker quits, they can usually get the same treatment results
from lower doses of psychiatric medications.

We recognize that cigarette and tobacco use is a dangerous form of addiction that creates more significant health problems. People with mental illnesses have the right to be smoke free and they must be given the education and support to make healthy choices. This includes not being tempted to begin smoking in the
first place through flavored tobacco.

Thank you for working on this important ordinance. NAMI Ramsey also sees it as a housing issue. Most apartments are non-smoking, and we don’t want to see people with a mental illness evicted due to smoking in their apartments.

Sincerely,
Mindy Greiling
​NAMI Ramsey County President

Many things can lead to a mental health crisis.

Increased stress, changes in family situations, bullying at school, substance use, and trauma or violence at home or in the community may trigger the sudden appearance of or an increase in behaviors or symptoms that lead to a mental health crisis.

Medical illnesses can also affect a child’s mental health and can lead to a crisis. These issues are difficult for everyone, but they can be more difficult for someone living with a mental illness. This is especially true for a child who probably doesn’t understand their illness and its symptoms.

Here are some examples of situations or stressors that can trigger a mental health crisis:

• Home or Environmental Triggers
• Changes in the family—parents separate, divorce or remarry
• Loss of any kind—family member or friend due to death or relocation
• Loss of family pet
• Transitions between parent's homes
• Strained relationships with step-siblings or step-parents
• Changes in friendships: boyfriend, girlfriend, partners
• Having a family member with an illness
• Fights or arguments with siblings or friends
• Conflict or arguments with parents
• Family poverty
• Trauma or exposure to violence

School Triggers:
​

• Worrying about tests and grades
• Overwhelmed by homework or projects
• Feeling singled out by peers or feelings of loneliness
• Pressures at school, transitions between classes and school activities
• Bullying at school
• Pressure from peers
• Suspensions, detentions or other discipline
• Use of seclusion or restraints
• Misunderstood by teachers who may not understand that the child’s behavior is a symptom of their mental illness
• Children’s perception that they are being culturally disrespected or are being discounted
• Real or perceived discrimination

Other Triggers:
​

• Stops taking medication or misses a few doses
• Starts new medication or new dosage of current medication
• Medication stops working
• Use of drugs or alcohol
• Pending court dates
• Being in crowds or large groups of people
• Community violence or trauma
• Major crisis in the world such as natural disasters, terrorism, pandemics
•  Arrest or justice involvement

Learn more by reading NAMI Minnesota's "Mental Health Crisis Planning for Children" booklet.