Schizophrenia: Three Moms in the Trenches

Send a Text to the Moms - please include your contact info if you want a response. thanks!

Guest: Kevin “Earleybird” Earley - peer specialist, speaker and artist

His challenges with mental health are documented in his father, Pete Earley's 2007 best selling book, "Crazy - A Father's Search Through America's Mental Health Madness", which chronicles his 2002 incident where Kevin broke into a stranger's house and took a bubble bath before being apprehended by the police. 

His work deals with mental health, race, privilege and resilience through adversity.  He speaks to inspire and resolve stigma through art.  He currently works with youth who live with mental health issues and helps mentor them to recover from their respective challenges.

We Ask about:

Kevin’s Story - from breaking into the house to being invited to the white house

This is My Brave 

Hiding in Plain Sight (Documentary)

Kevin’s Art

Kevin’s Music

Pete’s Book - Kevin’s initial reaction and later thoughts

Work as a peer specialist

Healing Power of Sound and Music

LINKS:

https://www.getthatworm.com/music

https://www.getthatworm.com/

https://www.pbs.org/show/hiding-plain-sight-youth-mental-illness/

Kevin’s YouTube Music:

https://www.youtube.com/@birdboogie

Hosts:

Who:

Randye Kaye - was a morning Radio Personality bringing humor to CT families when her own son was diagnosed with schizophrenia. Now she is still a Broadcaster, Actress, Voice Talent, Speaker, and Author (Ben Behind his Voices, Happier Made Simple)

Miriam Feldman -  is an artist, writer, and the mother of an adult son with schizophrenia. Her book, He Came in With It chronicles her family's story and was released to rave reviews on July 21st, 2020.

Mindy Greiling - Mindy Greiling was a member of the Minnesota House of Representatives for twenty years. She helped found the nation's first state mental health caucus, which successfully lobbied for a significant increase in Minnesota's mental health funding Her acclaimed memoir is Fix What You Can.

Support the show

Please share and support the podcast so we can reach more people who need the info and support.

Want to know more?
Join our facebook page 
Our websites:
Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman

Send a Text to the Moms - please include your contact info if you want a response. thanks!

A Just Us Episode

1. Can Families Help Prevent Tragedy? “The family of the gunman who killed 18 people last week in Maine contacted police with concerns about his mental health and access to guns more than five months before the massacre, according to their local sheriff.”

Listen to families!!!!

TIME magazine:

Five months before the deadliest mass shooting in Maine’s history, the gunman’s family alerted the local sheriff that they were becoming concerned about his deteriorating mental health while he had access to firearms, authorities said Monday.

1. The Harris Project (see Episode 53) and the national PSA film, “You Don’t Know the Half of It,”

The film will be shown to policymakers in Washington, DC and has the support of social media influencers. the harris project hopes the film not only raises awareness for co-occurring disorders but also jumpstarts system transformation nationwide. 

1. A listener asks: What is your relationship like with your son — NOW?

“How was it before he was sick — not how was he - but how were you all as mother and son? How has it changed? How are you mother and son now?

I’d love to hear how you three women have learned to cope specifically with this - not the medicine, the addictions, the system, policies, laws, judicial system, stigmas - but how did you live through this and cope with the loss?”

Mindy and her book: https://mindygreiling.com/

Randye and her book: https://www.randyekaye.com/

Miriam and her book: https://www.miriam-feldman.com/

Support the show

Please share and support the podcast so we can reach more people who need the info and support.

Want to know more?
Join our facebook page 
Our websites:
Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman

Send a Text to the Moms - please include your contact info if you want a response. thanks!

Guest: Gordon Lavigne, CEO,  Schizophrenia and Psychosis Action Alliance

And Alfonso Guido Jr., JD

The vision of S&PAA (The Schizophrenia and Psychosis Action Alliance is this: 

to see schizophrenia and psychosis spectrum disorders universally recognized and treated as neurobiological brain illnesses.

Its mission?:

to create a movement for systemic change to improve care, support, and equity for the millions of people living with schizophrenia and psychosis spectrum disorders - and to find a cure.

Sounds good to us! 

We ask:

1. When and why was Schizophrenia and Psychosis Action Alliance (S&PAA) formed?

2. Some may recall that the name was originally SARDAA. Why did you rebrand?

3. Why did each of you come to work in mental illness/health advocacy? Are you family members?

4. What are two or three of the most important things S&;PAA does?

5. What kind of research is most needed?

6. How do you work with NAMI? Weren’t they formed for similar reasons as S&PAA?

7. What other mental health organizations do you work with and how?

8. Do you think there are too many groups or that some may someday consolidate?

9. What issues does S&PAA follow and advocate for in Congress?

10. Mimi was at this spring’s Congressional educational event and participated in the Angry Moms

demonstration. Mindy is also a member of the Angry Moms. Will there be more events like this?

11. How can our listeners engage with S&;PAA? Can they join as a member?

12. What one change would each of you most like to see in national mental health policy?

13. What most needs funding?

14. Anything else you would like to add to this conversation?

LINKS:
https://sczaction.org/
https://www.guidelobby.com/

Mindy and her book: https://mindygreiling.com/

Randye and her book: https://www.randyekaye.com/

Miriam and her book: https://www.miriam-feldman.com/

Support the show

Please share and support the podcast so we can reach more people who need the info and support.

Want to know more?
Join our facebook page 
Our websites:
Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman

Send a Text to the Moms - please include your contact info if you want a response. thanks!

Guest: Jonathan Rosen, author 

The Best Minds is Jonathan Rosen's brilliant and heartbreaking account of an American tragedy. It is a story about the bonds of family, friendship, and community; the promise of intellectual achievement; and the lure of utopian solutions.

“Brave and nuanced…an act of tremendous compassion and a literary triumph.” – The New York Times

“Immensely emotional and unforgettably haunting.” – Wall Street Journal

Acclaimed author Jonathan Rosen’s haunting investigation of the forces that led his closest childhood friend, Michael Laudor, from the heights of brilliant promise to the forensic psychiatric hospital where he has lived since killing the woman he loved. A story about friendship, love, and the price of self-delusion, The Best Minds explores the ways in which we understand—and fail to understand—mental illness.

We Ask:

1.       What was the main reason you wrote this book? 

2.       Early in the book, you note a couple times how drawn Michael was to marijuana. We all noticed that in our sons as well. Knowing what you now know, what do you say to young people about marijuana?

3.  We often talk about family loss, but friendship loss is seldom addressed. Do you miss Michael - the “old” Michael? What in the friendship stayed alive for you? 

4.       You often reference how intelligent Michael is. When did you first suspect Michael had a serious mental illness? Did you think his intelligence would protect him? 

5.       When Michael thought his parents were Nazis, he patrolled the house with a kitchen knife, to the point where his mother locked herself in the bedroom and called the police. This happened years before he stabbed Carrie to death under similar circumstances. Knowing what you now know, what help should Michael have gotten to head that off? 

6.       Mothers like us grieve terribly when our children become ill with schizophrenia. Part of that grief is the loneliness they endure. We see their friends becoming uncomfortable around them and eventually, when they have little or nothing in common anymore, moving on with their lives. We understand this, but still, it adds to our grief. Could you describe for us how this process feels from a good friend’s perspective? 

7.       You noted that,” Everyone said insight was the key, but the more insight Michael got, the sadder and lonelier and angrier he became.” We have noticed that in our sons. Do you think this is part of why the mental health rights groups advocate against involuntary treatment? What is your response to their position?

Links: 

Jonathan’s Book, The Best Minds

Book,Tell Your Children: The Truth About Marijuana, Mental Illness and violence

In addition to "The Best Minds: A Story of Friendship, Madness, and the Tragedy of Good Intentions," published in April 2023 by the Penguin Press, Jonathan Rosen  is the author of two novels: Eve’s Apple and Joy Comes in the Morning, and two non-fiction books, The Talmud and the Internet: A Journey Between Worlds and The Life of the Skies: Birding at the End of Nature. His essays and reviews have appeared in The New Yorker, The Atlantic, The New York Times, Audubon, and numerous anthologies.  

Support the show

Please share and support the podcast so we can reach more people who need the info and support.

Want to know more?
Join our facebook page 
Our websites:
Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman

Send a Text to the Moms - please include your contact info if you want a response. thanks!

Guest: Alisa Roth,author :

Alisa Roth is a print and radio journalist who has reported extensively on the criminal justice system. Her first book, Insane: America’s Criminal Treatment of Mental Illness, investigated the mental health crisis in our courts, jails, and prisons. The New Yorker called it an “essential exposé” and The New York Times said it “is rife with sharp, brutal details that pull the reader beyond the realms of abstract policy debates.” She is former mental health correspondent for American Public Media.

1. Describe one example of the worst (e.g. solitary confinement or punishment for self harm) and the best (e.g. PACE, program for accelerated  clinical effectiveness) you saw in your travels. How did we get here?

2. What is it like for the officers who work in prisons? What is in their training or lack of it that stands out? This isn’t what they signed up for…yet they are asked to do it.

3.Is it hard to identify those with mental illness at first?

4. What works , and what could help make it work better?

5. Could family involvement help?  Do prisons request or get histories of patients?

6. We often hear that during deinstitutionalization we took people out of institutions and the mirror image number people are now in jails and prisons. In “Insane,” you contend that the story is far more complicated. Please explain.

7. You note that race, poverty, and mental illness overlap in the criminal justice system, but of all the gross imbalances of our current approach to criminal justice, perhaps no group has been hurt as much as people with mental illness. Why is that your conclusion?

8. Why is society more willing to spend money on jails and prisons (e.g., mental health units) than regular mental health care?

9. You write that about 80 percent of people with mental illness in the criminal justice system have a substance use disorder in addition to the mental illness. Have we made any progress in treating these illnesses in tandem?

10. You write that 30 % of those with serious mental illness receive no treatment at all. What kinds of mental health care do we need more of?

11. You note that in many states, much of the inventory of beds is reserved for forensic patients, at the expense of civilian ones, thus sending more people with mental illness to jail and prison. Do we need more inpatient care and long-term care?

12. What should a better mental health care system look like?

13. You write that since the changes of the 1970s, many cite the barriers to involuntary commitment as one of the reasons for the increased criminalization of mental illness. Do you also subscribe to that theory?

14. Why is enrollment in mental health courts so limited, making them, as you write, unable to make a dent in the number of people with mental illness who end up in the criminal court system.

Links:

AlisaRoth on twitter/X - @alisa_roth

Website: http://alisaroth.com/

Mindy and her book: https://mindygreiling.com/

Randye and her book: https://www.randyekaye.com/

Miriam and her book: https://www.miriam-feldman.com/

Support the show

Please share and support the podcast so we can reach more people who need the info and support.

Want to know more?
Join our facebook page 
Our websites:
Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman

Send a Text to the Moms - please include your contact info if you want a response. thanks!

Guest: Charla Collins

Charla’s daughter Kylee lives with severe mental illness. After suffering a traumatic brain injury in her teens she eventually turned to drugs, and with little resources available to get her the long term mental health care she needs, she often disappears into the streets, going long periods without contact. During a particular instance in 2021, Charla went out to look for her.

Here, she shares the knowledge and wisdom she has gained through her many searches to find, and help, her daughter.

Be prepared.

Tips include:

• Calling the Police
• Databases of Missing Persons
• Providing Photographs
• Flyers
• Getting Help
• Budgeting your Money and Time
• What Happens When You find Them?

and more.

Mindy and her book: https://mindygreiling.com/

Randye and her book: https://www.randyekaye.com/

Miriam and her book: https://www.miriam-feldman.com/

Hosts:

Who:

Randye Kaye - was a morning Radio Personality bringing humor to CT families when her own son was diagnosed with schizophrenia. Now she is still a Broadcaster, Actress, Voice Talent, Speaker, and Author (Ben Behind his Voices, Happier Made Simple)

Miriam Feldman -  is an artist, writer, and the mother of an adult son with schizophrenia. Her book, He Came in With It chronicles her family's story and was released to rave reviews on July 21st, 2020.

Mindy Greiling - Mindy Greiling was a member of the Minnesota House of Representatives for twenty years. She helped found the nation's first state mental health caucus, which successfully lobbied for a significant increase in Minnesota's mental health funding Her acclaimed memoir is Fix What You Can.

Support the show

Please share and support the podcast so we can reach more people who need the info and support.

Want to know more?
Join our facebook page 
Our websites:
Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman

Send a Text to the Moms - please include your contact info if you want a response. thanks!

The last time we invited our listeners to share their stories, the response was incredible - so we are doing it again!

Here are stories from families dealing with SMI (serious mental illness), including one gentleman who lives with the diagnosis himself.

You are not alone.

You’ll hear about early symptoms, incarcerations, fear, finances, the roller coaster of diagnoses, medications, and relapses…second hits, good periods, HIPAA barriers, and more….including, yes, some success and hope.

We end with ways we care for ourselves. Here is the list from the chat:

• outdoors/nature
• family and friends
• faith
• Swim
• walk, talk with friends, family
• inside Schizophrenia podcast
• NAMI/ Family to Family
• help others
• cry when you need to
• research
• Being an advocate!!!
• enjoy the good moments
• vacations...breaks
• 1. Antipsychotic drug 2. Family and friends 3. Disclosure - talking with people
• walk, podcasts, audiobooks, escape
• celebrate the small
• every little moment is big
• mindfulness
• LEAP is the best communication tool to help with your relationship with loved one with SMI
• connecting with people
• permission to have joy
• Meditation… chanting monks…
•  Dr. Jeffrey Thompson has some great CD’s with brainwaves that help to calm the rough waters and bring peace.
• you don't have to give up joy just because you have grief

Mindy and her book: https://mindygreiling.com/

Randye and her book: https://www.randyekaye.com/

Miriam and her book: https://www.miriam-feldman.com/

Hosts:

Who:

Randye Kaye - was a morning Radio Personality bringing humor to CT families when her own son was diagnosed with schizophrenia. Now she is still a Broadcaster, Actress, Voice Talent, Speaker, and Author (Ben Behind his Voices, Happier Made Simple)

Miriam Feldman -  is an artist, writer, and the mother of an adult son with schizophrenia. Her book, He Came in With It chronicles her family's story and was released to rave reviews on July 21st, 2020.

Mindy Greiling - Mindy Greiling was a member of the Minnesota House of Representatives for twenty years. She helped found the nation's first state mental health caucus, which successfully lobbied for a significant increase in Minnesota's mental health funding Her acclaimed memoir is Fix What You Can.

Support the show

Please share and support the podcast so we can reach more people who need the info and support.

Want to know more?
Join our facebook page 
Our websites:
Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman

Send a Text to the Moms - please include your contact info if you want a response. thanks!

Guest: Kathy Day, Senior Family Resource and Advocacy Manager,Treatment advocacy center

In her role as the senior family resources and advocacy manager at Treatment Advocacy Center*, Kathy Day helps families across the country find resources and strategies to work within the system of mental healthcare for their loved ones who have severe mental illnesses. She supports, coaches, strategizes, and listens to people whose loved ones live with SMI. She helps families help their loved ones help themselves. 

Kathy shares her own journey through the process of getting her family member conserved in CA on her public Facebook blog, Broken.

We Ask:

1. What 2 or 3 things would you most like families to know as you tell us about your work?
2. The immediate catalyst was when a listener asked us to address: why do so many people with schizophrenia "choose" to live on the street? What are your thoughts? (Related issues:  Anosognosia, Substance abuse, Criminalization)
3. Are there other reasons family members contact you?
4. What have you found helps families most?
5. What help and tips can you offer  families who have family members living on the street?
6. Any success stories?
7. What resources do you most often refer people to?How did you get into this work (a bit of your story),?

*The Treatment Advocacy Center is dedicated to eliminating legal and other barriers to the timely and effective treatment of severe mental illness. The organization promotes laws, policies and practices for the delivery of psychiatric care and supports the development of innovative treatments for and research into the causes of severe and persistent psychiatric illnesses, such as schizophrenia and bipolar disorder.

Links:

[email protected]

https://www.treatmentadvocacycenter.org/

“Broken” Blog:

www.facebook.com/ourbrokensystem

TAC Gala:

https://tac25thanniversarygala.org/

Want us to cover a topic? comment to share?

Facebook page @Schizophrenia3Moms

@SZ3MomsTrenches -  twitter

Randye Kaye -Broadcaster, Actress, Voice Talent, Speaker, and Author (“Ben Behind his Voices”, “Happier Made Simple”)

Miriam Feldman – Artist, Mom, Author “He Came in With It”

Mindy Greiling – member of the Minnesota House of Representatives for twenty years. Activist, Legislator, Author (“Fix What You Can“)

Support the show

Please share and support the podcast so we can reach more people who need the info and support.

Want to know more?
Join our facebook page 
Our websites:
Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman

Send a Text to the Moms - please include your contact info if you want a response. thanks!

Guest: Dani Page
§  SOAR (SSI/SSDI, Outreach, Access and Recovery) certified Retired attorney. Instructor on implicit bias in the space of disability
§  Juris Doctorate
§  Certified Family to Family facilitator for National Alliance on Mental Illness
§  SOAR (SSI/SSDI, Outreach, Access and Recovery) certified—for individuals with behavioral health challenges who are homeless or at risk
§  Presenter and facilitator on implicit bias in the space of disability


We learn:
SSI/SSDI/SSA - review (for full info, see episode 50)
Adult Function Reports - part of application - tips and instruction
Resources and info on Trusts for our loved one with disability:
ABLE
Spendthrift trusts or provisions
Pooled Trusts
Resource for employment help: Ability One


Links:
https://specialneedsanswers.com/poole...

https://abilityone.gov/

https://soarworks.samhsa.gov/

https://www.ablenrc.org/


Want us to cover a topic? comment to share?
Facebook page @Schizophrenia3Moms
@SZ3MomsTrenches -  twitter
Randye Kaye -Broadcaster, Actress, Voice Talent, Speaker, and Author (“Ben Behind his Voices”, “Happier Made Simple”)
Miriam Feldman – Artist, Mom, Author “He Came in With It”
Mindy Greiling – member of the Minnesota House of Representatives for twenty years. Activist, Legislator, Author (“Fix What You Can“)

Support the show

Please share and support the podcast so we can reach more people who need the info and support.

Want to know more?
Join our facebook page 
Our websites:
Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman

Send a Text to the Moms - please include your contact info if you want a response. thanks!

Guest: Jeffrey Lieberman,M.D., author of Malady of the Mind

Dr. Jeffrey Lieberman draws on his four-decade career to illuminate the past, present, and future of schizophrenia.

Of the many myths and misconceptions that obscure our understanding of schizophrenia, the most pernicious is that there is no effective treatment or cure. Though that may have been true in the past, the current reality couldn’t be more different: today’s treatments have the potential to be game-changing—and often lifesaving.

For the first time in history, we can effectively treat schizophrenia, limiting its disabling effects—and we’re on the verge of being able to prevent the disease’s onset entirely.

----

We ask about:

What can families do to get more psychiatrists on board? 

Hope for today’s young people who are in First Episode programs after their first psychosis. 

 Is true recovery possible or what do you mean by recovery?

What can families do to promote housing that heals/works for people like our sons? Why is there so little of it?

The leap that cannabis can cause not only psychosis but also schizophrenia. 

Assisted Outpatient Treatment and the right to treatment despite

Anosognosia.

…and much more!

LINKS:

https://jeffreyliebermanmd.com/

https://www.simonandschuster.com/books/Malady-of-the-Mind/Jeffrey-A-Lieberman/9781982136420

https://www.amazon.com/Malady-Mind-Schizophrenia-Path-Prevention/dp/1982136421

Mindy and her book: https://mindygreiling.com/

Randye and her book: https://benbehindhisvoices.com/

Miriam (Mimi) and her book: https://www.miriam-feldman.com/ 

Hosts:

 Randye Kaye - was a morning Radio Personality bringing humor to CT families when her own son was diagnosed with schizophrenia. Now she is still a Broadcaster, Actress, Voice Talent, Speaker, and Author (Ben Behind his Voices, Happier Made Simple)

Miriam (Mimi) Feldman -  is an artist, writer, and the mother of an adult son with schizophrenia. Her book, He Came in With It chronicles her family's story and was released to rave reviews on July 21st, 2020.

Mindy Greiling - Mindy Greiling was a member of the Minnesota House of Representatives for twenty years. She helped found the nation's first state mental health caucus, which successfully lobbied for a significant increase in Minnesota's mental health funding Her acclaimed memoir is Fix What You Can.

Support the show

Please share and support the podcast so we can reach more people who need the info and support.

Want to know more?
Join our facebook page 
Our websites:
Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman