Schizophrenia: Three Moms in the Trenches

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

Guest: 

Annie Slease, Co-Founder of the Mental Health Literacy Collaborative

Do you have a loved one with Serious Mental Illness?

Do you wonder why it took so long for someone to recognize the symptoms?

Mental Health Literacy would have helped prevent the crises we have dealt with.

The mission of the MHLC is to make evidence-based mental health literacy a foundational part of PK-12 education and communities.

Annie Slease, M.Ed. (she/her) is co-founder and Advocacy Director of the Mental Health Literacy Collaborative (themhlc.org), a national non-profit dedicated to making evidence-based mental health literacy foundational in PK-12 schools and communities.

When her child’s mental health crisis emerged over a dozen years ago, Annie was a classroom teacher unaware of mental health literacy. Inspired by her experience navigating family mental illness without information or support, and eventually navigating the criminal justice system as well, Annie repurposed her 25-year teaching career into advocacy.

We ask:

What is the MHLC doing?

Who are you serving?

What are your priorities?

What can people do to get involved, or get information and help?

Links:

https://www.themhlc.org/

https://stillhopefulmom.blogspot.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/

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: 

Lauren Yasuda Rainey , DDS

We ask about getting people with schizophrenia to care for their teeth, if/how medications affect teeth, the effect of Medicaid only paying for annual cleanings and check ups, compared to private insurance that pays for twice a year. Many of our listeners have asked for a show on dental issues and of course we are interested too!

Dr. Lauren Yasuda Rainey completed a General Practice Residency at Tufts University School of Dental Medicine.

 At Tufts, a majority of her time was treating persons with medically complex needs and managing patients with her co-residents that came through Tufts Medical Center Emergency Department.

Currently she teaches dentists in the US & Canada minimally invasive restorative techniques. 

We ask:

1. What do you recommend to patients and/or their families for getting people with schizophrenia and other serious mental illnesses (SMI) to care for their teeth?

2. Do medications, especially psych meds, affect teeth? If so, how?

3. What is the effect of Medicaid only paying for annual cleanings and checkups, compared to private insurance that usually pays for twice a year?

4. What challenges have you encountered in caring for people with SMI? 

Links:

www.laurenrainey.com

@raineydds

https://www.catapulteducation.com/blog/laurenyasudarainey

Randye on Lisa Wexler show re incarceration and SMI:

https://shows.acast.com/6398bb70ee249200127c1182/episodes/randye-kayes-personal

Products:

https://carifree.com/

https://cocofloss.com/

(The founder of Cocofloss, another mom dentist, is providing the PROMO code for your podcast listeners to purchase pH 8 toothpaste!

THREEMOMS for 15% off sitewide thru 6/30 on Cocofloss.com)

https://www.voco.dental/us/home.aspx

To purchase pH balanced anti-cavity products visit: https://carifree.com/shop/

To find a dentist that carries & is knowledgeable about those pH balanced products in-office visit: https://carifree.com/find-a-dentist/

Other products mentioned:
RiseWell Scrubby floss infused with hydroxyapatite to remineralize teeth

https://risewell.com/products/scrubby-floss

Cocoshine toothpase, pH 8, whitening and remineralizing, mint and lychee breeze flavors:

https://cocofloss.com/collections/brush-and-shine

ReminPro, pH 7 (neutral), remineralizing and anti-sensitivity:

Information here: https://www.voco.dental/us/products/preventive-care/protective-dental-care/remin-pro-not-available-in-canada.aspx

Not available for purchase unless through a dental distributor. Ask your dental office!

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

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

Miriam and her book: https://www.

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!

Guests are: Karlyn Nelson and Michelle Post

Karlyn Nelson

Michelle Post, M.A., is a Licensed Marriage and Family Therapist (MFC 40198) with nearly 20 years of experience providing counseling and psychotherapy to clients in the greater Los Angeles area

According to the NIMH, People with schizophrenia have a much higher rate of suicide than the larger population: People with schizophrenia have a 10% rate of suicide compared with the larger population’s 1.3%rate of suicide. 

Suicide is the biggest reason for the decreased life expectancy of people with schizophrenia. 

A larger number of people with schizophrenia contemplate suicide. Around 40–79% of people with schizophrenia have reported having suicidal thoughts.

Saddest fact is that it is at the time of improved insight that most attempts are made. ie. when the person has finally moved past anosognosia and realizes his plight it is with improved understanding that this decision is made.

We Ask:

1. What is an “emotional heart attack”/
2. What are "The Five Things" when dealing with suicide loss in the family?:

1. Get help yourself (best indicator of how well a child does after the death of a parent is how well the surviving parent copes… so if only one can get help, needs to be the parent).
2. Use truthful and clear info about the cause of death and explain it in child terms – let the child lead with questions – do not over load them with info.  They will need different info as they age
3. Acknowledge and validate a child’s feelings
   1. Reassure them they are not to blame
   2. Address their fears and anxieties
4. Encourage them to continue routine activities, structure gives them a sense of security
5. Include them in as many memorial / activities around the illness, injury, and death as they choose.
   1. Prepare them
   2. Let them make an informed decision
   3. Share info and allow participation
   4. Debrief with them.

3. What can be done for suicide  prevention?

LINKS:

Suicide hotline: 988

https://postfamilycounseling.com/

https://www.instagram.com/karlynnelson/

https://didihirsch.org/wp-content/uploads/Manual_for_Support_Groups_for_Survivors_of_Suicide_Attempts.pdf

This is the link to the manual for survivors of suicide attempt groups, and training can be made available through Didi Hirsch Ment

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!

We’re  delighted to welcome a return guest, Jerri Clark.

Jerri first joined us on Episode 32, “Channeling Grief and Anger into Advocacy and Acceptance”, and is now working with TAC (Treatment Advocacy Center-, see Episode 71 with Kathy Day. Episode 31  with Lisa Dailey, Episode 35 with Sabah Muhammad ), ) as Family Resource and Advocacy Manager. She has a fellowship as TAC’s DJ Jaffe Advocate this year. Jerri is a family member whose son with SMI died from suicide.

The six coping strategies (not linear)

1. Normalize Ambivalence
2. Find Meaning
3. Adjusting Mastery
4. Reconstruct Identity
5. Revive Attachment
6. Discover New Hope

We Ask:

1. Tell us a bit about your story, Calvin and how you came to your present job at TAC.

2. Tell us about your fellowship as TAC's DJ Jaffe Advocate

3. Who coined the term Ambiguous Loss, and what does it mean?

4. How does one process this complex form of grief when there is little recognition of its impact?

5. How are you developing strategies for dealing with Ambiguous Loss? - what is the  

ambiguous loss family training project ? 

Links:

https://www.treatmentadvocacycenter.org/

[email protected]

Dr Pauline Boss books

Facebook: TAC Family Support Group:

https://www.facebook.com/groups/tacsupport

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!

We’re  delighted to welcome a return guest, Eric W.T. Smith. He was also interviewed  in Season 1 of 3 Moms (episodes 15 and 16, an AOT Success Story)

In Eric’s words:

“There are peers and supports in large numbers for depression, anxiety, eating disorders, and a host of other diagnoses, but nothing much available in the world of anosognosia and psychosis where a person in recovery and/or their parents/caregivers can regularly reach out and schedule a meaningful block of time to discuss their individual and/or family needs related to anosognosia and psychosis with a person who successfully went through all of that.

 I'm here for people to connect with and help them accomplish what meaningful recovery means to them, and to build a bridge of trust and communication between them and treatment providers, within their own families, and with me as someone who lived much of what they are going through or have gone through. That should be part of what we do for appropriate policy and practice, but it isn't.”

Over the years Eric Smith has spoken publicly about his journey through mental illness and addiction to a wide variety of audiences. Now he is a nationally recognized mental health advocate, public speaker, and consultant. 

He is a Commissioner at Texas Judicial Commission on Mental Health and owner of Eric WT Smith Consulting LLC

Part of his story is written about in Bedlam, authored by Peabody Award-winning Kenneth Paul Rosenberg, MD. 

Part of Eric’s journey is included in the book You Are Not Alone: The NAMI Guide to Navigating Mental Health

Eric also wrote a chapter about being incarcerated without treatment for severe mental illness in the 2022 anthology Navigating Bipolar Country -  and was featured in People magazine in 2023.

Links:

www.ericwtsmith.com  -- my consulting business, Eric W. T. Smith Consulting, LLC

https://www.youtube.com/watch?v=um-Zb-xr9Bc  -- a link to a presentation about my consulting services with relevant background info that lead to the creation of my consulting business

https://www.texasjcmh.gov/about-us/commissioners/smith-eric/  -- here is a link to my Commisioner bio for the Texas Judicial Commision on Mental Health

https://www.texasjcmh.gov -- here is a link to the main page for the Texas Judicial Commision on Mental Health

[email protected] -- people can email me directly if they would like to do so

 https://www.facebook.com/groups/www.teamdanielrunningforrecover.org 

Eric on Linkedin:

https://www.linkedin.com/in/ewsmith/

-CURESZ has a new book available for purchase (as of 2/9/24 on Amazon, although it may also be for sale elsewhere), and I contributed by writing a short piece about my journey…here is the Amazon link to the book: <

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!

Schizophrenia, a complex and harrowing illness, presents an ongoing challenge for caregivers. In this groundbreaking book, discover the missing links that empowers you to navigate the labyrinth of decisions and actions required to provide the best care for your loved one.

Nicole Drapeau Gillen is a mother who recognized that caregivers like herself often find themselves thrust into this challenging, complex and stressful situation with little clear guidance on how to help a loved one with a serious mental illness.

Her goal is to create a practical and actionable handbook that offers valuable insights into caring for your loved ones facing this formidable condition.  With a 35-year background in the business world as a former IT executive and Chief Marketing Officer (CMO), NIcole now aims to channel her skills into a more meaningful endeavor - supporting fellow caregivers.

She lives in Virginia and loves teaching fitness, taking care of her family and learning how to be a better caregiver.

This book addresses everything from setting up disability support, to legal support (guardianship, conservatorship, or power of attorney), to financial support (Supplemental Security Income, Social Security Disability Insurance), to insurance (Medicaid), to estate planning and trusts. It further provides resources on the role of the government, jails, rehabilitation, housing and homelessness.

• What was your motivation for writing this?
• 3 moms - what are your favorite sections?
• Nocole - What's happened since the book has been released?
• Is there anything I would have done differently, now that it is released?
• What kind of response have I received, and from whom?
• What has surprised you most in the responses?
• What's next?

Links:

Schizophrenia and Related Disorders: A Handbook for Caregivers: https://www.amazon.com/Schizophrenia-Related-Disorders-Handbook-Caregivers/dp/B0CQMM889H

Schizophrenia and Other Related Disorders. Handbook For Caretakers 

Nicole’s 

 Website,

 Facebook page; and 

Tiktok.

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!

It is estimated that more than two million arrests in the United States each year involve people with Serious Mental Illnesses (SMI) – half of which are homeless at the time of their arrest.

Jails have become places where a disproportionate number of people with SMI spend significant amounts of time; their ties to the community severed, their treatment needs unmet, and their illnesses made worse. 

But it doesn't have to be that way - This episode dives into a system that works, saves money, and helps those it used to harm.

Judge Steve Leifman is the Associate Administrative Judge of the Miami-Dade County Court Criminal Division.

He will discuss his journey into the mental health system, the legal and medical history that led to America’s mental health crisis and the essential elements necessary to create an effective system of care that ultimately will transform the mental health and criminal justice systems and make jail the last option for people with serious mental illnesses, not the first.

Links:

The 11th Judicial Circuit Mental Health Project was featured on the cover of Governing Magazine - August 2015 edition.
http://www.governing.com/topics/public-justice-safety/gov-miami-mental-health-jail.html

The Definition of Insanity – PBS Documentary (April 14, 2020)
https://doifilm.com/

Miami Center for Mental Health and Recovery Website:
https://miamifoundationformentalhealth.org/

https://www.cbsnews.com/miami/news/miami-center-for-mental-health-and-recover-on-the-verge-to-opening-its-doors/ 

Conference of Chief Justices (CCJ)/ Conference of State Court Administrators (COSCA) National Judicial Task Force to Examine State Courts’ Response to Mental Illness Report and Recommendations
https://www.ncsc.org/__data/assets/pdf_file/0031/84469/MHTF_State_Courts_Leading_Change.pdf

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!

Youthcast Media Group (formerly Urban Health Media Project) trains high school students from under-resourced communities to report, write, and broadcast stories about health and social issues that affect their neighborhoods and cities. 

The goal is to help students better understand and communicate about health issues and disparities that directly affect them, and to foster a generation of diverse journalists that will enter and enrich news organizations across the country.

The students learn to harness the power of their voices as journalists to share the rich experiences of their communities in a way that honors, informs and empowers.

And today, they turn the tables to ask the 3 Moms the questions that matter to them - as youth, and as journalists.

The founder Jayne O’Donnell, is on a plane and couldn’t join us, but we do have producer/instructor Marianne O’Hare .

O’Donnell  won numerous awards in her nearly 30 years as an investigative reporter (broke the story on how early airbags were harming small children - which led to the industry standard changing) and later health care journalist at USA Today. She founded Youthcast Media Group about 6 years ago, understanding that people in underserved communities are more impacted by the social determinants of health. And that it was important to provide the tools of journalism to inspire young people from these communities to shine a light on issues impacting their lives and their futures.

Our High School Journalists:

1)     Carmah Owen: Freshman at Herndon High School, Herndon Virginia. Recently joined as a student contributor to YMG. She is just embarking on her journalism training journey. 

2)     Safa Janjua: She is a sophomore at Herndon High School in Herndon, Virginia. She recently joined the Youthcast Media Group and is producing social media posts on topics around mental health and distracted driving. She’s not sure what her college major will be yet. But she thinks her dream job would be in photography. 

3)     Kayla Johnson – is a Senior at Christo Rey High School in Philadelphia. She loves to read, write, cook and do art – anything that allows her to showcase her creativity. She has been producing content for the Youthcast Media Group on topics such as distracted driving and the decriminalization of mental illness. She is the president of several clubs at her high school and is looking forward to studying broadcast communications or public relations in college.  She’s applied to several colleges including Howard University and Princeton.

They ask:

1)    Could you help us understand what that diagnosis really means - and why it’s so devastating?

 2)   What’s it like from their perspective? How do they describe what it feels like to them? Delusions. Voices. It must be so terrifying for them. 

3)    And what you think is wrong about how our system responds to mental illness? How do we ‘decriminalize’ it?

 4)     You all write about how you had to deal with the fact that sometimes, during psychotic episodes – when they were having delusions - your sons have threatened violence, against you, or themselves, or others. How have you learned to handle that phase of the illness?  It must be so frightening. How do you protect yourselves as well as them? 

5)     You all talk about the fact that the laws have to change to better support families going through this. Mindy – as a state lawmaker – you actually DID change some laws. Could you talk about your efforts to pass more effective mental health legislation? And how that looks in different states across the country? Where are they getting it right? &a

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!

Tony is a man with an unquiet mind who delights in the One who delights in him. He is diagnosed with rapid cycling bipolar disorder with psychotic features. With a lot of professional and spiritual help, he has published three books — Delight in Disorder: Ministry, Madness, Mission; When Despair Meets Delight: Stories to Cultivate Hope for Those with Mental Illness. And, Hope for Troubled Minds: Tributes to Those with Brain Illnesses and Their Loved Ones.

(contributors to Hope for Troubled Minds include friends of the podcast Katie R. Dale (associate editor), Jerri Clark,  Laura Pogliano, Charla Collins, Leslie Carpenter,Kevin “Earleybird” Earley, Catherine J. Rippee-Hanson and Randye Kaye)

Q; What are the 3 top things you hope listeners will take away from your personal journey/ story? - many accomplishments, yet in your own words, a “mental health disability”

Q: What are the top 3 things you want people to take away from your latest book?

Q; All net proceeds from the sale of this book will be evenly distributed to three vital mental health causes: the National Alliance on Mental Illness (NAMI), the Treatment Advocacy Center (TAC), and Delight in Disorder Ministries (DiDMin). - can you say more about these choices?

Q;“It is impossible to read this collection without a moist eye, an overwhelming anger at the cruelty of brain diseases, exasperation at society’s failure to help, and a deep admiration for the undaunted spirit of those who speak out and advocate for their fellow travelers on such a difficult path.” - Pete Earley, author of CRAZY: A Father’s Search Through America’s Mental Health Madness, finalist for the 2007 Pulitzer Prize

Book TOC:

Part I. Letters

Chapter 1. To the Children

Chapter 2. To the Parents

Chapter 3. To the Partners

Chapter 4. To God, Self, and Others

Part II. Song Lyrics and Poetry

Chapter 5. Song Lyrics

Chapter 6. Poetry

SZ 3 moms Episodes referenced:
Clubhouses - Episode 30

One excerpt:

He’s Still in There - 

Gibby

He is still in there. From time to time, I get to see my sweet, loving son. We get a few words that remind me of the son he once was. Then the creature that has taken up residence in my son’s brain realizes he is gone and comes for him. Then we are back in the land of conspiracy and I know he is gone again. Let the worry begin again. Till the next time, my son. I'll be waiting.

Links:

Tony’s Website:

https://delightindisorder.org/

Hope for Troubled Minds book:

https://a.co/d/5aLk5jf

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!

Katie R. Dale is no stranger to the storms of Serious Mental Illness. Blindsided by an intense episode of bipolar disorder at 16, she has come a long way. Katie has written a memoir on her psych hospitalizations and how God helped her heal. Dale has conquered many losses including her sanity and firstborn child. Despite these challenges, she has been an award-winning author and advocate, working toward equity for those with Serious Mental Illnesses through her

books, blog, and work with nonprofits including National Shattering Silence Coalition, Delight in Disorder, and Fresh Hope for Mental Health. 

Her passion is to share practical answers to living with and advocating for Serious Mental Illnesses.

Questions:

1. Tell us a bit about you and your experiences with Serious Mental Illness.

2. How did you start advocating for those with SMI, and what does that look like in all the various channels you serve?

3. On the outset you are a strong advocate for those with SMI, and a professing Christian. How do you advocate for SMI within the faith-based communities and churches?

4. What do you tell people who are not as faith-oriented about the difference between hearing voices in a psychotic state, and hearing God’s voice in your state of stability now?

5. What are misconceptions of those within the church who believe SMI is spiritually-based?

6. How do you reconcile your faith in a good God with the reality of a chronic mental illness?

7. What are benefits of leading a faith-informed life with a Serious Mental Illness?

Links:

But Deliver Me From Crazy (Katie’s memoir)

https://a.co/d/cu7DYg6

When she isn’t crafting her next book, you can find Katie playing with her daughter, watching a movie with her husband, or training for a 5k. You can find out more about her at https://katierdale.com/

 and social media @KatieRDale.

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