Schizophrenia: Three Moms in the Trenches: Recent Episodes
Randye Kaye
Schizophrenia in the Family. How do we cope? How can we help? We each have adult sons with schizophrenia and have written acclaimed books about it. We say it like it is, to help families, practitioners and those with SMI (serious mental illness) feel less alone...and learn. Randye Kaye, Mindy Greiling, Miriam Feldman...and guests.
Send a Text to the Moms - please include your contact info if you want a response. thanks!
Guest: Allen Giese, author of When Mental Illness Strikes: Crisis Intervention for the Financial Plan
The episode of "Schizophrenia: Three Moms in the Trenches" features a discussion with financial planner Alan Giese, of Modera Wealth Management, about ABLE accounts and financial planning for individuals with severe mental illness.
Randye, Mindy, and Miriam, share personal updates about their sons' current situations, highlighting the challenges and fluctuations in their conditions.
Giese explains that ABLE accounts allow individuals receiving SSI or Medicaid to save money without jeopardizing their benefits, detailing the account's features, contribution limits, and eligible expenses.
The conversation also touches on the importance of special needs trusts and the role of financial planners in creating comprehensive plans.
Giese shares his personal experience with his son's mental illness and advocates for the use of professional services to navigate these complex issues.
The hosts and Giese emphasize the need for families to have informed plans in place for the future care of their loved ones.
LINKS:
https://moderawealth.com/
Link to player with SZ 3 Moms episodes about “legal and financial help”
https://www.randyekaye.com/schizophrenia-three-moms-in-the-trenches/need-legal-or-financial-help-with-smi-in-the-family-begin-here
Thanks for liking and sharing the podcast!
Mindy and her book: https://mindygreiling.com/
Randye and her book: https://randyekaye.com/
Miriam and her book: https://www.miriam-feldman.com/
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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 podcast episode featured a discussion with Dr. Martijn Figee and Dr. Alexander Charney from the Icahn School of Medicine at Mount Sinai about deep brain stimulation (DBS) as a potential treatment for schizophrenia.
The doctors explained that DBS is a neurosurgical procedure involving the implantation of electrodes to target specific brain circuits, offering a durable treatment option for severe, treatment-resistant symptoms like hallucinations and delusions.
They shared that initial results from a small number of patients have been promising, with some experiencing immediate and significant symptom reduction.
The treatment is currently in the experimental stage, with ongoing clinical trials at Mount Sinai and Johns Hopkins. The ideal patient for DBS would have chronic, medication-resistant symptoms and the ability to provide informed consent and comply with follow-up care.
The conversation also touched on the challenges of schizophrenia research, the hope for future advancements, and the importance of participation in studies and brain donation for scientific progress.
Link:
https://icahn.mssm.edu/research/blau
Mindy and her book: https://mindygreiling.com/
Randye and her book: https://randyekaye.com/
Miriam and her book: https://www.miriam-feldman.com/
Thanks for liking and sharing the podcast!
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?
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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!
OPLM (Other Parents Like Me) interview the 3 Moms! - Mimi Feldman, Mindy Greiling, Randye Kaye -
Together, we'll explore how to hold both grief and hope, care for yourself while supporting your child, navigate overwhelming systems, set healthy boundaries, and support your entire family through the challenges. Most importantly, we want you to know that you are not alone—there is connection, understanding, and a path forward.
Thanks to OPLM for making this members-only content available to all our listeners. You can learn more about them, the free resources, and membership benefits, at https://oplm.com/
Other Parents Like Me is the nation’s largest, most accessible online community designed exclusively for parents of teens and young adults struggling with mental health challenges.
Support the show
Please share and support the podcast so we can reach more people who need the info and support.
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Our websites:
Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman
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Guest: , Melissa Dalhoe, Social Worker, Asst Professor, University of Minnesota Dept of Psychiatry & Behavioral Sciences
For parents of loved ones with serious mental illness, one question often lingers beneath the surface: Will they ever find love? Will they date, build relationships, or have a partner to share life with?
Dating and Mental Illness Discussion
The podcast team welcomed Melissa Dalhoe to discuss dating and serious mental illness. The discussion focused on the concept of "frozen in time," where a person's emotional growth stops at the onset of their mental illness, potentially affecting their ability to form relationships. Melissa was brought in to discuss this topic after a listener requested information about someone with schizophrenia who missed out on dating during their teenage years due to their illness.
Dating Curriculum for Psychosis Patients
Melissa explained how she became interested in developing a dating curriculum for individuals with first-episode psychosis, noting that it was driven by the wants and needs of the people she works with. She described the curriculum development process, which included input from multiple professionals and individuals with lived experience, as well as a survey of program participants. The curriculum, which is set to launch in August, focuses on skills training for dating and relationships, with an emphasis on interprofessional perspectives and lived experience input.
Dating Curriculum for Psychosis Patients
Melissa discussed a new dating skills curriculum being implemented in the University of Minnesota's Navigate program for people with first episode psychosis, aged 18 and over. The curriculum covers topics like values, goals, dating apps, messaging etiquette, emotional intimacy, and social cognition specific to interpreting emotions in relationships. The program will offer both in-person and online classes over the course of a year, with social activities and potential membership opportunities to support skill development outside of formal classes. Melissa emphasized the importance of ensuring dating goals are self-directed rather than imposed by family, and noted that while recruitment is ongoing, there has been strong interest from potential participants.
-Social Skills for Schizophrenia: A Step by Step Guide - https://www.amazon.com/Social-Skills-Training-Schizophrenia-Second/dp/157230846X
Move to Heal in Connecticut:
https://www.movetohealct.org/
-Melissa Dalhoe, DSW, MSW, LICSW,
mdalhoe@umn.edu,
https://med.umn.edu/bio/melissa-dalhoe
-UMN Department of Psychiatry & Behavioral Sciences Affiliated Psychosis Program Information
M Physicians NAVIGATE Program -
https://mphysicians.org/our-clinics/st-louis-park-clinic-navigate-program
M Health Fairview Adult Strengths Program -
https://www.mhealthfairview.org/treatment/adult-strengths-program
STRIDE for Bipolar Disorder -
https://www.mhealthfairview.org/treatment/stride-first-episode-bipolar
M Health Fairview Child & Adolescent Strengths Program -
https://www.mhealthfairview.org/treatment/university-minnesota-child-and-adolescent-strengths-program-casp
M Health Fairview Early Strengths Program -
https://www.mhealthfairview.org/treatment/early-strengths-program
Referral Pathways
Call 952-525-4500 (M Physicians St Louis Park psychiatry clinic location) or 612-273-8700 (M Health Fairview Riverside psychiatry clinic location)
https://www.mhealthfairview.org/early-intervention-program-referral-information
Thanks for liking and sharing the podcast!
Mindy and her book: https://mindygreiling.com/
Randye and her book: https://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!
Today on Schizophrenia: 3 Moms in the Trenches, we’re joined by Dr. Steve Olson—psychiatrist, longtime advocate for clozapine, and a clinician experienced in using Electroconvulsive Therapy when it can truly help. ECT is often misunderstood, especially in the context of schizophrenia, so today we’re digging into what it is, when it works, and what families should know. Dr. Olson helps us separate myth from reality and explore whether ECT has a place in treatment for our loved ones.
Questions for Dr. Olson
Understanding ECT
- For families who only know ECT from movies, how do you explain what it actually is today?
- What symptoms or situations in schizophrenia make you consider ECT as an option?
Effectiveness & Use Cases
3. How effective can ECT be for schizophrenia, and what outcomes have you seen in practice?
4. Are there particular subtypes or symptom profiles where ECT is most helpful—or least helpful?
5. How quickly do patients typically respond, compared to medication changes?
Clozapine Context
6. You’ve been a strong advocate for clozapine. In what scenarios would you consider ECT in addition to clozapine?
7. For someone who hasn’t responded fully even to clozapine, how do you decide whether ECT could help?
Safety, Stigma, and Practicalities
8. What are the most common fears or misconceptions families have about ECT, and how do you address them?
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Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman
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Moms kick off Season Six, with a sneak peek back at the past few months, and a look ahead.
Coming up: ECT, new research, microdosing?
What would you like us to cover?
Contact us on our facebook page, or via any of our websites.
https://www.randyekaye.com/schizophrenia-three-moms-in-the-trenches
or write randye@randyekaye.com
Links:
Corey Minor Smith Panel on Homelessness:
https://www.youtube.com/live/PJo8v5orjPk?si=W1Ae9bvw0FVjEI1M
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.
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Our websites:
Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman
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Lives Reimagined: Changing the Course of Psychotic Illness (Ep. 125)Guests: authors of the new book (same name) -
Katharine Dougherty PhD, and Lisa Mann, PhD , and Dr. Rocco Marotta-a psychiatrist known for his successful treatment of "hopeless" cases-and practiced with remarkable success by the team he led at The Lodge program at Silver Hill Hospital in New Canaan, Connecticut.
Written for families struggling to navigate the world of neuropsychiatric illness and useful for providers looking for a different approach to the treatment of neuropsychiatric disorders
The book can be found at the following sites by putting in the title and authors: amazon.com, barnesandnoble.com, sdppublishingsolutions.com
The Center for the Treatment and Study of Neuropsychiatric Disorders: silverhillhospital.org/TheCenter
Why relabel SMI NBD (neuropsychiatric brain disease )?
THEMES:
- Hope and persistence are critical
- No two cases are exactly the same
- Medication and adherence and sobriety are important to sustained stability
- It takes a team and long-term relationships to sustain stability
- Communication among team members is critical
- Taking small risks and succeeding leads to other risks
- Rigid ideology has no place when you are untangling complexity and nuance
- The diagnosis of NBD is often tied to a sense of shame and failure for patients and families
- There are many important layers to the recovery journey
- Constant reevaluation is important and this includes the importance of patient feedback
Poetry from Zachary Sutphin
"White pink blue"
White pink blue
The pills look like candy
But taste like defeat.
They taste like mother’s advice.
Correct, we grow too see
I take them Because otherwise,
I might start believing.. believing in things that can't be believed
in minds unlike mine
They tell me it’s illness.
But what if it’s clarity?
What if losing grip
Was divine sanity
Still, I take them.....
For the full poem, see our "Schizophrenia 3 Moms" Facebook page
Thanks for liking and sharing the podcast!
Mindy and her book: https://mindygreiling.com/
Randye and her book: https://randyekaye.com/
Miriam and her book: https://www.miriam-feldman.com/
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!
When the loved one with SMI is your peer, your partner, there are some challenges that differ from parenting someone with serious mental illness. Support, Education and new mindsets can help.
Guests: Jeff Zuckerman, author of Unglued: A Bipolar Love Story - https://www.jeffzuckerman.com/
and Annie Jaeger, wellness coach and NAMI Family Support Group facilitator - https://www.anniejaeger.com/
Link to support group:
https://heypeers.com/meetings/44205/details
Scroll down for Lisa Wexler show links
We ask:
1. What do you see as the differences between being married to someone with a serious mental illness compared to the parent of someone with a mental illness.
2. How have your children been affected by your spouse's mental illness, and how do you navigate your role as both spouse and partner in that regard?
3. How do you set boundaries (a whole podcast in itself, no doubt) for yourself without guilt or shame? (Which can be a discussion about self-care.)
4. Since you co-facilitate one of the few support groups for partners of those with a mental illness, tell us about the benefits of support groups.
Lisa Wexler Links
https://www.instagram.com/lisawexler.radio/
https://www.lisawexler.com/
https://podcasts.apple.com/us/podcast/is-trumps-plan-to-help-the-mentally-ill-good/id1063388065?i=1000721737436
https://podcasts.apple.com/us/podcast/a-new-drug-could-revolutionize-treating-mental-health/id1063388065?i=1000718001577
Also LISA on the LAW segments
Thanks for liking and sharing the podcast!
Mindy and her book: https://mindygreiling.com/
Randye and her book: https://randyekaye.com/
Miriam and her book: https://www.miriam-feldman.com/
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: Casie Fariello from Other Parents Like ME
- OPLM is an online platform and virtual community, designed to create a safe space with the access and support parents need as they move from crisis to healing.
Links: https://oplm.com/
Here are the social media links for Other Parents Like Me:
- Facebook: https://www.facebook.com/otherparentslikeme
- Instagram: https://www.instagram.com/otherparentslikeme
- LinkedIn: https://www.linkedin.com/company/other-parents-like-me
- Linktree: https://linktr.ee/oplm
We’ve also created a one-month promo code for your: TRENCHES3
We Ask:
- Your mission and how/why it started
- resources available to parents like "us"
- is this limited to parents of teens with mental health issues, or can parents of older kids - and other relatives - benefit?
- what do you most want people to know?
- Tips for parents, even if they don’t pay the $ to join the community?
Thanks for liking and sharing the podcast!
Mindy and her book: https://mindygreiling.com/
Randye and her book: https://randyekaye.com/
Miriam and her book: https://www.miriam-feldman.com/
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 - inspired by listener input
Many listeners have asked us to do an episode about recovery that is “in the middle” - not miraculous, not superstar, but appreciating when “ordinary” is, in itself, a miracle.
Along the way we also talk about President Trump’s Executive Order on Homelessness - On July 24, the White House issued an Executive Order, “Ending Crime and Disorder on America’s Streets,” which directs federal agencies to make it easier to involuntarily treat people with serious mental illnesses as part of a bid to address homelessness across the United States.
Addressing Homelessness and Mental Illness
The group discussed President Trump's executive order on addressing homelessness and mental illness, with Randye, Mindy, and Mimi expressing concerns about the approach. They agreed that while affordable housing is important, it alone is not enough to solve homelessness, and that involuntary treatment must be accompanied by a robust mental health system. Mindy highlighted the need for both conservative and liberal support to create a comprehensive continuum of care, while the group criticized the lack of funding for mental health services under the current administration. They shared personal stories of individuals with mental illness who were unable to access appropriate treatment due to system failures, emphasizing the urgent need for a balanced approach that combines housing, treatment, and support services.
Challenges of Schizophrenia Recovery
The group discussed the challenges faced by individuals with mental illness, particularly focusing on those who are not in active psychosis but still experience significant negative symptoms. The Moms explained that recovery does not mean complete recovery but rather being in a process of improvement, and highlighted the eight principal negative symptoms of schizophrenia, including apathy, blunted emotions, social withdrawal, and anhedonia. The group explored how negative symptoms affect daily life and recovery for their sons.
Challenges of Schizophrenia's Negative Symptoms
The group discussed the challenges of managing schizophrenia, particularly focusing on negative symptoms and their impact on daily life.
Mindy shared her experience with her son Jim, who struggles with negative symptoms such as lack of initiative and social withdrawal, leading to isolation and difficulty engaging in activities.
Mimi shared her positive experience at Dr. Laitman's barbecue event with her son, emphasizing the value of community and understanding among families facing similar challenges.
The hosts also mentioned President Trump's executive order on homelessness and encouraged listeners to create local support groups for individuals with mental health issues.
Randye described her son's journey with schizophrenia, including periods of improvement followed by setbacks, and highlighted the importance of structure, community, and purpose and treatment in managing the condition. Both women emphasized the difficulty of explaining negative symptoms to others and the need for more support and understanding for individuals with schizophreni
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: Stephanie Greer (DoroMind), Xavier Amador(LEAP)
Ever wish you had a communication coach in your back pocket to guide you through a conversation with your LO (loved One) with SMI (Serious Mental Illness)?
DoroMind and the LEAP Institute are working on it - want to try it out?
“At Doro Mind and the LEAP Institute, we've been weaving AI into our clinical operations to improve the experience for the families we support, the care teams we employ, and to make what we offer more financially accessible and sustainable. We'd appreciate the opportunity to highlight some of the work we've done at the intersection of SMI and AI - and also highlight some of the new AI work underway with Xavier Amador and the LEAP Institute.”
In this episode, hear what happens when Randye and Mindy try out this LEAP approach on current challenging situations- with on-the spot AI coaching.
In the Summer of 2025, you can try it yourself!
Dr. Amador, author of I Am Not Sick, I Don’t Need Help, was our guest on episode 27 (one of our most popular). We had a guest from Doromind on Episode 107, along with Dr. Rob Laitman.
Links:
https://www.doromind.com/
https://leapinstitute.org/
To use the free 3-day Trial
- Download the Doro Mind app in the app store on your phone
- Open the Practice tab (this is a tab at the bottom of the screen)
- Tap ‘start’ to access your free 3-day preview. After you click the start button you will have 3 days to test out the AI coach.
Thanks for liking and sharing the podcast!
Mindy and her book: https://mindygreiling.com/
Randye and her book: https://randyekaye.com/
Miriam and her book: https://www.miriam-feldman.com/
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 Wyatt Forte, and his mom Denise Forte
Those Not So Little Voices offers a unique narrative as it is authored over the course of three and a half years --- from the age of fourteen to almost eighteen --- by a teenager struggling to make sense of psychotic symptoms that he experienced since he was six years old.
Wyatt’s journey is an amazing story, filled with heart-wrenching moments and major setbacks, but most importantly, it's an uplifting story that shows the power of love, support and resiliency.
Link: the book on Amazon -
https://a.co/d/4i3kVkU
Thanks for liking and sharing the podcast!
Mindy and her book: https://mindygreiling.com/
Randye and her book: https://randyekaye.com/
Miriam and her book: https://www.miriam-feldman.com/
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: Rakesh Jain, MD, and Sherland Peterson, who has experience living with TD
More than 14 million Americans have a serious mental illness, such as bipolar disorder, major depressive disorder or schizophrenia – conditions that can be treated with antipsychotic medicines. Use of these medicines has increased 22% in recent years, particularly within the last 10 years, in turn increasing the risk of a debilitating chronic movement condition called tardive dyskinesia (TD), which can cause uncontrollable and repetitive movements that make eating, drinking and walking difficult.
While TD can be treated, integrating new medicines into existing treatment plans can be difficult, and people living with schizophrenia may worry that treating TD could cause regression in their mental illness. A one-pill, once-daily treatment option exists that can be integrated into existing mental health treatment plans, helping people manage their mental health and TD in tandem.
We Ask:
Dr. Jain:
· What is tardive dyskinesia and what are the common signs and symptoms of this condition?
· What is the connection between tardive dyskinesia and the use of antipsychotics, and what are the primary challenges that patients and doctors face when treating this condition?
· What is this one pill, once-daily treatment option and why is it an important option to consider?
· Where can people go to learn more?
Sherland:
· Can you share your personal story of living with tardive dyskinesia?
· What impact has tardive dyskinesia had on your life, from daily activities, to your mental health and social events?
· What do you wish more people knew about tardive dyskinesia?
Thanks for liking and sharing the podcast!
Mindy and her book: https://mindygreiling.com/
Randye and her book: https://randyekaye.com/
Miriam and her book: https://www.miriam-feldman.com/
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: Laura M . Brancato, Esq. - Elder Law And Vulnerable Client Specialist
“As an attorney and an advocate, my mission is to provide specialized legal advice and support to families with vulnerable loved ones. With a focus on mental health, special needs, elder law, substance abuse disorders and related matters, I am dedicated to helping clients navigate complex legal landscapes and achieve the best possible outcomes for their families.”
TEXT re HIPAA and patient privacy (link below):
Even when the patient is not present or it is impracticable because of emergency circumstances or the patient’s incapacity for the covered entity to ask the patient about discussing her care or payment with a family member or other person, a covered entity may share this information with the person when, in exercising professional judgment, it determines that doing so would be in the best interest of the patient.
Past Episodes: Conservatorship, ep. 6
Judge Lisa Wexler on Mental Health and Legal Matters, ep. 12 and 13
SSDI: Ep. 50
Laura on LinkedIn:
https://www.linkedin.com/in/laura-m-brancato-67728814/
Video on Silver Hill website:
https://silverhillhospital.org/community/video/families-in-a-double-bind-the-need-for-legal-advice-in-navigating-the-psychiatric-health-system-by-laura-brancato-esq/
HHS and HIPAA:
https://www.hhs.gov/hipaa/for-professionals/faq/488/does-hipaa-permit-a-doctor-to-discuss-a-patients-health-status-with-the-patients-family-and-friends/index.html
Thanks for liking and sharing the podcast!
Mindy and her book: https://mindygreiling.com/
Randye and her book: https://randyekaye.com/
Miriam and her book: https://www.miriam-feldman.com/
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: Natasha Williams and Liz Sjaastad
Natasha Williams -The Parts of Him I Kept: The Gifts of My Father's Madness (Natasha’s book) is an intimate account of a daughter’s coming of age in the face of her father’s schizophrenic unraveling. Williams investigates the limits of our medical and cultural understanding of schizophrenia while chronicling the shared burden and benefits of caring for a mentally ill family member.
Liz Sjaastad - Liz has written a memoir, You’re Too Young to Understand, about growing up with, and then caring for, her father – a quiet Russian immigrant, an intellectual who drank too much and her mother – a smart and proper beauty who suffered with the life-altering brain illness of schizophrenia, though she never acknowledged it.
We ask:
If you could give one piece of advice to a child with parents like yours, what would it be?
When did you begin to understand?
Did your family life affect your siblings differently? If so, how?
Have you forgiven your parents and if so when and how?
When did you think your children were old enough to understand? How did you talk with them?
Have you stopped fearing for yourself getting a serious mental illness? Your children?
LINKS:
Liz Sjaastad
lsjaastad@comcast.net
www.lizsjaastad.com
NatashaWilliams:
https://www.natashawilliamswriter.com/
Thanks for liking and sharing the podcast!
Mindy and her book: https://mindygreiling.com/
Randye and her book: https://randyekaye.com/
Miriam and her book: https://www.miriam-feldman.com/
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: Fortescue Filmmaker / Rebeccah Love
About Rebeccah Love:
This Toronto-based filmmaker, writer, and community organizer debuts her debut feature film, “Fortescue,” a drama exploring the complexities of mental health, female friendships, and societal expectations.
“Fortescue” delves into the protagonist’s struggle with psychosis, a condition Love herself has navigated, offering a raw and honest portrayal rarely seen on screen.”
We ask:
-> Can you tell us about your mental health journey?
-> How did you first get into filmmaking?
-> How does your filmmaking relate to your experience of psychosis?
-> What does your mental health advocacy look like in Canada?
-> What did you wish you knew when you were first diagnosed with Bipolar?
Links:
FORTESCUE TRAILER
https://vimeo.com/1009454730?share=cop
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: Regina Graham, MD (she/her)
Medical Director of Early Psychosis Programs,
Health Sciences Clinical Professor
UC Davis School of Medicine
According to the National Institute of Mental Health, nearly one in five U.S. adults live with a mental illness ( 52.9 million people in 2020). While People of Color (POC) have rates of mental health disorders similar to Whites, these disorders are more likely to last longer and result in more significant disability for POC. Most mental illness goes untreated, especially in communities of color. Fifty-two percent of Whites with AMI received mental health services in 2020, compared to 37.1% of Blacks and 35% of Hispanics.
Dr. Graham is a child, adolescent, and adult psychiatrist, with expertise in intensive mental health settings -- including inpatient, residential, and emergency interventions -- working with vulnerable populations. She has a passion for prodromal, early and first-episode psychosis and its management utilizing specialized care models to optimize outcomes for patients, their families, and communities.
Definition of Minoritized Communities:
- Groups who have experienced systemic discrimination and marginalization due to factors like race, ethnicity, gender, sexual orientation, or socioeconomic status
- Groups excluded from opportunities and power structures in our society
Questions:
- How does cultural background impact the experiences of schizophrenia for the individual and their loved ones?
- How could trauma impact members of minoritized communities with schizophrenia?
- How are members of minoritized communities with schizophrenia being served in mental health services, and what are the barriers to treatment?
- Specific story about how individuals from minoritized communities with schizophrenia hesitate in seeking treatment during a crisis?
Thanks for liking and sharing the podcast!
Mindy and her book: https://mindygreiling.com/
Randye and her book: https://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
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Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman
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- Letters…we get letters…well, actually emails, comments, and messages. In this episode we do our best to respond with perspective, information and resources.
- Please know that we are not doctors, cannot prescribe medication - nor do we know all the legalities and resources in each state or country (hello, international listeners!) - but, often, our guests do.
Her are some of the episodes we mention for your references:
108. Should our Loved One with SMI Live With Us?
99. What Will Happen When We’re Gone? Trusts, Pooled Trusts and More
83. What Do I Do Now?: THE Handbook for SZ Caregivers: guest, Nicole Drapeau Gillen
71. Help and Tips for Families in Mental Illness Crisis: Treatment Advocacy Center
56. Housing That Heals: Essential for Many with SMI
50 and 70. Help! I Don’t Understand SSI/SSDI - guest: Dani Page, JD
33. Fellowship Place, One Supportive Community Fostering Mental Health
18. Rethinking Clozapine: Should it be the First Resort to Treat Schizophrenia? - with Dr. Robert Laitman
12 and 13. Let’s Talk about the Law - Mental Illness and Legal Matters (Judge Lisa Wexler
6. Conservatorship for Schizophrenia: Who Needs it? Why? and How?
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Mindy and her book: https://mindygreiling.com/
Randye and her book: https://randyekaye.com/
Miriam and her book: https://www.miriam-feldman.com/
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Actionable strategies for these family members and friends who give so much but whose needs and sacrifices are often unappreciated. Written by clinical psychologist Dr. Michelle Sherman and her mother, DeAnne Sherman, an advocate and educator, the book provides:
• Tools to cope with difficult emotions
• Strategies to empower loved ones, including how to navigate the mental health system
• Communication and limit-setting skills
• Approaches to supporting loved ones who have experienced trauma or have PTSD
• Ways to manage common challenges, such as alcohol or drug misuse, and when a loved one declines professional help
• Strategies to support children
• Skills to build personal resilience and strengthen relationships
Links:
I Am Not Alone book:
https://www.seedsofhopebooks.com/i-m-not-alone
Loving Someone with Mental Illness book:
https://www.seedsofhopebooks.com/loving-someone-with-a-mental-illness-or-history-of-trauma
Website for Michelle and DeAnne (has free resources):
https://www.seedsofhopebooks.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/
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Join our facebook page
Our websites:
Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman
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Guests: Robert C. Smith, MD and Vinod Srihari, MD,
Every day, millions of Americans face untreated mental health challenges—and too often, their first point of contact is a medical doctor unequipped to help. Most physicians - and many others who teach and advise youth - aren’t trained to recognize or treat mental health conditions, yet they’re the ones patients turn to first. This gap in training has devastating consequences, contributing to the mental health crisis we see today.
**Dr. Robert Smith, a seasoned physician and thought leader, is sounding the alarm: medical doctors need fundamental training in mental health care. His new book, Has Medicine Lost Its Mind? Why Our Mental Health System is Failing Us and What Should Be Done to Cure (Prometheus Books, March 4, 2025) addresses the poor state of mental health care in the US, why it occurred, what needs to be done, and how to accomplish this politically.
Our Second Guest, Vinod Srihari, MD, spearheads a new program in CT which has just been expanded to reach the whole state after a trial run in 10 towns around New Haven. STEP is a clinic staffed by mental health providers in different fields – psychology, psychiatry, nursing, and social work. This "interdisciplinary" team seeks to provide comprehensive care for individuals who are early in the course of a psychotic illness in order to prevent symptoms from becoming disabling.**
We Find Out:
- Why so many mental health issues go untreated and misdiagnosed—and what it costs us as a society.
- The value of early detection and treatment in Mental illness to help with prevention and recovery
- How medical doctors can better address mental health needs with proper training. And tips on how patients should talk to doctors about mental health.
- The hidden consequences of the mind-body split in modern medicine. The importance of integrating mindfulness and exercise into "treatment."
- Practical solutions for integrating mental health care into the broader medical system.
LINKS:
Bob’s website:
https://www.robertcsmithmd.com/
Bob’s Book:
https://a.co/d/2yOHhlp
Mindmap:
https://mindmapct.org/
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 Greili
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Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman
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Eric J Dias is no stranger to the struggles people with addiction and severe mental illness experience. He has lived with schizoaffective disorder since he was a teenager. Eric has been a tireless advocate for people with SMI and their families.
He writes about the many issues and emotions associated with SMI (Severe Mental Illness) in his novel, I Got Sober For This.
In the story, he weaves the stories with issues that affect us all, especially when it comes to SMI - in our homes, the courts, the streets, AA meetings, detention centers, and the criminal justice system.
He currently hosts a show for the National Shattering Silence Coalition’s YouTube Channel interviewing people with lived experience with mental illness, care givers, advocates and clinicians.
We ask Eric about his story, his research, stigma, the need for community, and the power of hope in recovery.
Links:
I Got Sober for This book: https://a.co/d/4PV7Vh8
Mindy and her book: https://mindygreiling.com/
Randye and her books: https://www.randyekaye.com/
Miriam and her book: https://www.miriam-feldman.com/
Randye’s substack:
https://randyekaye.substack.com/
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Join our facebook page
Our websites:
Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman
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Returning Guest: Brian Stettin. NYC City Hall’s senior advisor on severe mental illness.
In Episode 61, we interviewed Brian Stettin, senior advisor to the Mayor Eric Adams administration on severe mental illness.
Brian drafted the legislation that became Kendra's Law when he was an assistant attorney general in 1999, after a young journalist, Kendra Webdale, was shoved into an oncoming train by a young man from Queens with a long history of mental illness.
The Adams administration's push was to have more severely mentally ill people brought to hospitals for psychiatric evaluation as compassionate intervention, and to change the state laws about the length of hospital stays.
This law is designed to apply to those who can't recognize their mental condition or take care of themselves, not just those who present an immediate threat to themselves or others.
Lately, with so many SMI and homelessness incidents in NYC making news (a homeless woman set on fire in the subway; a symptomatic mentally ill man’s death by chokehold; NY Governor Kathy Hochul’s support of getting help for those with SMI). we revisit this important issue.
Almost two years later:
- How is the program going?
- What are the successes and challenges?
- What more can be done?
Links:
Randye’s blog posts about these issues:
https://randyekaye.substack.com/p/journalists-please-stop-saying-against?r=j36ce
https://randyekaye.substack.com/p/luigi-mangione-jordan-neely-where?r=j36ce
https://www.randyekaye.com/benbehindhisvoices/journalists-stop-saying-against-their-will-its-about-care-not-force
https://www.randyekaye.com/benbehindhisvoices/my-son-will-be-homeless-this-friday-heres-why-it-didnt-need-to-happen
https://www.randyekaye.com/benbehindhisvoices/luigi-mangione-jordan-neely-mental-illness-in-the-news-one-mothers-opinion
Articles About NYC’s Compassionate Intervention:https://www.nytimes.com/2023/06/25/nyregion/mentally-ill-homeless-nyc.html?unlocked_article_code=1.n04.XLWi.cts0Q8s7hfkd∣=url-share
https://gothamist.com/news/adams-launches-new-overnight-homeless-outreach-program-pairing-police-clinicians-on-nyc-subways
https://www.nydail
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Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman
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GUEST: Darrell E. HerrmannWANT THE TRANSCRIPT? CLICK HERE
Millions of Americans are affected by psychosis, a condition that includes schizophrenia, bipolar disorder, and depression.
One man, Darrell Herrmann, is sharing his story in an effort to help others who may be diagnosed with similar conditions.
Herrmann, who holds a degree in physical science and served as a military officer, is diagnosed with schizophrenia and has lived with it for 40 years.
Herrmann has written a book titled Straight Talk About Living with Severe Mental Illness. He hopes readers gain a better understanding of psychosis and how to adjust their lives to manage the condition.
We Ask:
- Your Story
- Your Views on Anosognosia
- Difference Between Hallucinations and Psychosis
- Thoughts About Anti-Psychiatry
- Your document on NSSC and your book
- greatest frustrations with the family advocacy movement with regards to serious mental illness
- Re involuntary hospitalization; “A change in the delusion or a different hallucination can totally change the person’s patterns of action in moments. Remember to the person in psychosis the hallucinations and delusions are reality, and for example if he hears a voice that convinces him that someone is out to kill him, he may act in perceived self-defense and kill or harm that person. “
- “Currently the criterion for hospitalization is danger to self or others. This should become actively psychotic instead. ”
Darrell Herrmann - CURESZ Foundation (The guide to psychosis and psychotic illnesses for NSSC)
NSSC_Guide Psych+Illnesses
The YouTube video of Darrell's speech for NSSC on 6 June :https://www.youtube.com/watch?v=hpR4Jv1o2Gk&t=684s
The article I published on LinkedIn titled "The Illusion Of Recovery Oriented Hospitals": Darrell Herrmann’s Post
A link to my book on Amazon (It can also be purchased through Barnes & Nobel)
Straight Talk About Living With A Severe Mental Illness: Herrmann, Darrell Ernest: 9781707189779: Amazon.com: Books
Mindy and her book:
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The Neverending Cycle: Crisis, Coping, Advocacy (Ep. 104)
Guest: Rachel Streiff: Mental Health Advocate, Mentor to SMI Caregivers,
NAMI F2F talks about the the emotional stages for families: Crisis, Coping, Advocacy
Unfortunately, like a game of chutes and ladders, you can cycle back at any time. Only thing is - it all becomes more familiar each time. You know where you are.
Randye is in crisis, Mimi is Coping, Mindy is out there advocating - meeting with a judge and legislator who are mental health champions about civil commitment statute and how to get better services for the the ones who are so ill they slip through the cracks,
So our special mom #3 guest, Rachel Streiff, joins us again (episode 37 - Advocating for the Best Available SMI Care) to ask for all our help in her advocacy - the Angry Moms (see episode 67) fight to remove REMs requirements for clozaril need signatures on a petition, and letters to the FDA.
And - we all always advocating. Just that the room for that shrinks when in crisis. Podcast hosts are not immune. The other shoe can fall at any time.
The Cycle Never Ends - so let’s talk about it. No one is alone - no one is immune.
Links:
http://www.change.org/EndtheclozapineREMS
https://www.theangrymoms.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/
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Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman
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Amazing Grace: Single Mother, Adult Son with Schizophrenia, Award-Winning Short Film (Ep. 103)
Guest: Aiden Keltner, Filmmaker
Based on the true stories of many families, Amazing Grace tells the story of a single mother caring for her adult son with schizophrenia.
Aiden Keltner is the filmmaker, and did some of his research in focus groups gathered by Randye and Mindy, and is a treasured friend of this podcast!
Amazing Grace is a three time Emmy Award recipient (NATAS PSW) for Best Arts/Entertainment Program, Best Director and Best Performer (Deborah Gilmore Smyth).
Aiden's focus as a filmmaker, is on telling underrepresented stories from the mental health community. Aiden has been inspired by his own lived experience with close family members diagnosed with serious mental illnesses. Currently, he is developing different feature films on this subject.
We ask:
- your story/motivation for doing this film
- your research with Mindy and Randye and others
- what happens next?
- what can film do for these communities?
- what kinds of stories we hope to see in film and media representing SMI - the moms chime in
Links:
Contact: aiden.keltner@gmail.com
Amazing Grace Film: https://vimeo.com/1005014736
Website: https://www.aidenkeltner.com/
Instagram: https://www.instagram.com/aidenkeltner/
Facebook: https://www.facebook.com/profile.php?id=100013107667252
Facebook: facebook.com/agshortfilm
Mindy and her book: https://mindygreiling.com/
Randye and her book: https://www.randyekaye.com/
Miriam and her book: https://www.miriam-feldman.com/
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Mindy Greiling
Miriam (Mimi) Feldman
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Guest: Lindsay Mary Galvin Rauch, Mental Health Advocate/Speaker
“ I draw inspiration from my upbringing with ten older brothers, six of whom bravely fought schizophrenia. Sharing my story and journey can make a positive impact. Let's break the stigma together.”
Many years ago, Lindsay Mary and her sister, Margaret Galvin, decided they wanted to share their family story in the hopes it would reduce or eliminate the stigma associated with schizophrenia and mental illness for other families. They also wanted to give hope to those who have been traumatized by these brain disorders. After selecting Bob Kolker to be the journalist to bring their story to life, they never imagined their story would become a New York Times bestseller. This profile has resulted in significant interest to transition their story into a documentary and mini-series which they hope will accelerate and deepen the conversation around mental illness enabling thousands more to benefit from our pain and experience coping with this reality.
We ask:
- your journey, especially your life now as an adult sibling
- What part does anosognosia play in your family story with SMI?
- The documentary based on the book - what would you change?
- Your work as an advocate and speaker
- what you would say/advice to adult siblings of those with SMI
NOTE: Episode with Bob Kolker is #25
Episode with our daughters: #19
Links:
https://lindsaymarygalvinrauch.com/
Book:
https://a.co/d/9nokCML
Mindy and her book: https://mindygreiling.com/
Randye and her book: https://www.randyekaye.com/
Miriam and her book: https://www.miriam-feldman.com/
High Vibes And A Mic | Motherhood, Family, International Culture, Wellness, Spirituality
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Dan Bain's Sleepy Time Mumbles
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Please note: if you write us “Fan mail” (thanks! )- please include some contact info (email is best) if you want a reply.
Guest: Ken Duckworth, NAMI Chief Medical Officer
Ken Duckworth’s journey into psychiatry started when he was a boy growing up with a dad who experienced severe bipolar disorder. His father was loving, kind and periodically quite ill, hospitalized for months at a time. Ken became a psychiatrist in part to help his father. He is very fortunate to serve as the Chief Medical Officer for NAMI and to be part of this remarkable community.
Ken recently authored NAMI’s first book, “You Are Not Alone: The NAMI Guide to Navigating Mental Health―With Advice from Experts and Wisdom from Real People and Families.” Written with authority and compassion, this is the essential resource for individuals and families seeking expert guidance on diagnosis, treatment and recovery, featuring inspiring, true stories from real people in their own words.
We Ask about:
- your journey,
- your book -
- Thoughts on parental responsibility and liability, and
- any promising new research in schizophrenia.
LINKS:
NAMI:
https://www.nami.org/
You Are Not Alone Book:
https://a.co/d/gki4xvi
Ask the Expert:
https://www.youtube.com/playlist?list=PLlZf3Rbl5IeolHREKufjax_iD_mEj2Pdh
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 schiz
iMOM Podcast
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High Vibes And A Mic | Motherhood, Family, International Culture, Wellness, Spirituality
Looking for a relatable and fun moms podcast? Look no further than High Vibes and a...
Listen on: Apple Podcasts Spotify
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Our websites:
Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman
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Guest: Kody Green, patient advocate
Kody lives with schizophrenia and is a motivational speaker/content creator with over a million followers on TikTok alone (@schizophrenichippie**). He has also overcome struggles with drug addiction and incarceration, which he shares information about on his platform. To be a better advocate and speaker, Kody has been trained as a peer support specialist, recovery coach and suicide prevention specialist.
Kody's podcast is called Unseen & Unheard:
https://podcasts.apple.com/us/podcast/unseen-unheard/id1589319270**
"After my release from incarceration and my schizophrenia diagnosis, I thought there was nothing left for me. When I started sharing my story online, I did not think anyone would care. After gaining 1 million followers on social media, I realized how my struggles and my story could help others." Kody J. Green
We will ask Kody to share his story, and especially:
- Incarceration experience and steps afterward
- Long-acting injectables
- Anosognosia - did he ever have it?
- Did he have family support? (we are moms, soo…..)
- His upcoming book!
Links:
Here is his website: https://www.kodygreen.com/
Here is a link to his TikTok: https://www.tiktok.com/@schizophrenichippie?lang=en%22%20\o%20%22https://www.tiktok.com/@schizophrenichippie?lang=en%22%20\t%20%22_blank
https://www.hopeforschizophrenia.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/
iMOM Podcast
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What Will Happen When We’re Gone? Trusts, Pooled Trusts and More-Ep. 99
Guest: Megan Brand, Colorado Fund for People with Disabilities Executive Director
Dani Page, JD (her other episodes with us are Episodes 50 and 70)
In its simplest form, a Trust is a relationship, in which one person holds title to property, subject to an obligation to keep or use the property for the benefit of another..
We ask:
- Can we use Trusts to help our loved ones with SMI - now, and after we are gone?
- Some of the differences between Pooled Trusts and Individual Trusts?
- How to evaluate Pooled Trust Organizations or other Trustees when considering who to name as trustee
- How does the Secure Act impact the ability to provide support through inherited IRA's
- Language in trust documents to cloak our loved ones from creditors getting ahold of trust money needed to support their lives after we are dead.
- What can we set up now so that our loved ones will be okay after we are gone….and not to put a huge burden on their siblings?
Links:
https://www.cfpdtrust.org/
www.cfpdtrust.org
https://nationalplanalliance.org/programs/
https://aptrusts.org/
Elder Law Attorneys:
https://www.naela.org/
Certified Elder Law Attorneys (CELA):
https://www.americanbar.org/groups/senior_lawyers/resources/voice-of-experience/2010-2022/what-cela/
Mindy and her book: https://mindygreiling.com/
Randye and her book: https://www.randyekaye.com/
Miriam and her book: https://www.miriam-feldman.com/
iMOM Podcast
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Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman
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Purpose, Belonging, Community: Starting and Opening an International Clubhouse for People with MI -Ep. 98
**A New International Clubhouse in Minnesota, USA!
Guests:**
Karina Forrest Perkins , Chad Bolstrom, Vail Place
Nishi and Margaret, Members
Vail Ramsey County Clubhouse in MN, USA had a huge turnout for its Grand Opening event and ribbon cutting ceremony. Vail Communities **in Minneapolis is spearheading the Clubhouse expansion.
The Clubhouse is a "One-Stop Shop", functioning as a community-based hub, a single point for people to access, integrate, and coordinate a range of services to work toward mental health recovery.
How Can YOU start one?**
The Vail Communities Clubhouses are just two of over 300 programs that follow the Clubhouse Model. A Clubhouse is a place where members and staff work together side-by-side to operate all aspects of the Clubhouse. The Clubhouse can also help with housing, employment, education, health and wellness and so much more. The Clubhouses also offers a wide variety of social, recreational, and cultural events and activities.
Links:
https://vailcommunities.org/clubhouses
- https://clubhouse-intl.org/what-we-do/what-clubhouses-do/
- https://clubhouse-intl.org/our-impact/clubhouse-outcomes/
- https://www.vailplace.org/join/clubhouse-program/
- https://edition.pagesuite.com/popovers/dynamic_article_popover.aspx?guid=bf1bddf3-b973-4d4d-a523-1d62aa732684&v=sdk&appcode=STP731&eguid=3368cea9-0776-4c6c-86cd-7d731136318b&pnum=1
- https://www.minnpost.com/mental-health-addiction/2024/02/vail-place-poised-to-open-mental-health-clubhouse-in-st-paul/
- https://www.youtube.com/watch?v=YLzfYUQ76gc
Mindy and her book: https://mindygreiling.com/
Randye and her book: https://www.randyekaye.com/
Miriam and her book: https://www.miriam-feldman.com/
iMOM Podcast
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Guests : Laura Balboni Craciun, Policy Director National Shattering Silence Coalition, MA, and Arundati (Arun) Nagendra, Ph.D.
At the recent S&PAA conference (Mindy ) and at the Johns Hopkins schizophrenia symposium (Mimi and Randye) , as well as on our Facebook page, many families tell us their stories about cannabis - many now see it as causing, or at least triggering psychosis. That led us to this episode.
Although schizophrenia contains a spectrum of symptoms and influences, many now believe that marijuana was the last straw that “pulled the trigger” which resulted in psychosis and its aftermath - and that, if we’d known the dangers we could have done more to prevent our loved ones from serious mental illness episodes.
Do science and statistical evidence back this up?
What can the average advocate do NOW?
S&PAA Position statement re cannabis: (see more on website or SPAN website)
- Oppose legalization of recreational cannabis use
- Pair any legalization effort with stringent, practical harm-reduction practices.
- Hold the cannabis industry financially accountable.
- Implement public health initiatives that educate about the risks of cannabis use.
- Conduct research into the effects of cannabis use.
- Finance clinical assessment and intervention.
Links:
https://sczaction.org/
SPAN:
https://span-scz.org/
SAM -
https://learnaboutsam.org/
Johnny’s Ambassadors -
https://johnnysambassadors.org/research/
NSSC-
https://www.nationalshatteringsilencecoalition.org/
Oppose marijuana rescheduling to the Drug Enforcement Administration (DEA) : https://www.votervoice.net/SAM/Campaigns/115038/Respond
NSSC-Darrell Hermann’s peer talk on psychosis recovery (including genetic vulnerability and cannabis at 51:00 during the Q&A).
https://youtu.be/hpR4Jv1o2Gk?si=IMn8rai6x0bokqL5
Cannabis and psychosis
http://www.schizophrenia.com/prevention/streetdrugs.html#
https://www.psychologytoday.com/us/blog/your-brain-on-food/202105/what-really-happens-in-the-brain-during-a-cannabis-high
Laura’s story in Newsweek:
https://www.newsweek.com/cannabis-tr
iMOM Podcast
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“Guest Mom” Laura Pogliano
The Johns Hopkins Schizophrenia Symposium brings together world-renowned experts in psychiatry, mental health, and neuroscience in order to present diverse aspects of the disorder, discuss their findings with colleagues, and be available to answer attendees’ questions.
This year, the speakers presented their cutting-edge and multidisciplinary approaches, including those that interfere among molecular pathology, digital science, public outreach, and clinical psychiatry.
Families were invited to attend - for FREE - and could attend a panel discussion the night before, plus the chance to participate in round-table lunch discussions with the speakers.
Through this symposium, they hope to translate the efforts of the lab bench to the bedside, and eventually to society by discussing and addressing schizophrenia and other mental illnesses from both clinical and scientific standpoints.
The symposium was open to all: researchers, clinicians, and family members of those diagnosed with schizophrenia.
It was amazing. Here Mimi and I review what we learned, along with friend of the podcast, Laura Pogliano.
Links:
https://www.hopkinsmedicine.org/psychiatry/specialty-areas/schizophrenia/symposium
To support the symposium:
https://aspire.hopkinsmedicine.org/project/40520
Message from the Director:
We have assembled here in the Schizophrenia Center a broad and deep pool of expertise in the Hopkins tradition that integrates patient care, research, and public health.
My role is similar to an orchestra conductor, trusting my musicians and striving for balance among all the instruments. I see my job as one to support and facilitate the talent that surrounds me.
Thank you for your interest in our work.
Sincerely,Akira Sawa, M.D., Ph.D.
Mindy and her book: https://mindygreiling.com/
Randye and her book: https://www.randyekaye.com/
Miriam and her book: https://www.miriam-feldman.com/
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No One Cares About Crazy People is a feature documentary film-in-progress about the tragedy, crisis and chaos of severe mental illness in America – and a burgeoning national crusade to do something about it
NO ONE CARES ABOUT CRAZY PEOPLE takes us inside the tragedy, chaos, and crisis of severe mental illness in America. It derives in part from Ron Powers’ acclaimed book of the same name, a hybrid narrative of tragic family memoir and searing social history.
Guest: Gail Freedman, Director & Producer
Your support is critical to help us complete this film and tell the powerful stories that can be a catalyst for new understanding and action. All gifts, grants and donations are fully tax-deductible.
Links:
https://noonecaresfilm.com/
Congrats Aiden Keltner, friend of the podcast! @amazinggraceshortfilm received 3 of the 4 Emmys we were nominated for including, Arts Entertainment Program, best director and best performer!
Amazing Grace Film
An aging single mother fights to hold onto the only life she’s ever known as her son with schizophrenia begins to lose his sanity.
Mindy and her book: https://mindygreiling.com/
Randye and her book: https://www.randyekaye.com/
Miriam and her book: https://www.miriam-feldman.com/
iMOM Podcast
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Randye Kaye
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Guests: Angela and Michael Brisbin
(plus 3 Moms updates and we read some Fan mail!)
INTO THE LIGHT Meaningful Recovery From Psychosis, a 60 minute documentary discusses how to achieve Meaningful Recovery from Serious Mental Illness with education, medication and advocacy.
A message of hope and real help, the film’s topics include: barriers to treatment, the underutilized medication, clozapine, and the importance of a supportive community.
There are over 25 interviews of patients, parents, leading medical professionals, healthcare professionals, advocates – from across the USA, including:(Bolded names have been guests on this podcast too!)
Dr Xavier Amador, LEAP;
Dr Lisa Dixon, CUIMC;
Dr Ken Duckworth, NAMI;
Miriam Feldman, SCZ: Three Moms in the Trenches;
Dr Rob & Ann Mandel Laitman, TEAM DANIEL;
Dr Jeffrey Lieberman;
Dr Jonathan Meyer;
Lynn Nanos,
Michael Orth;
Bill Rodgers, The Marathon Runner;
Dr Fuller Torrey;
Elyn Saks,
Rachel Streiff; and
Bethany Yeiser, CURESZ.
Narrated by Tony Shalhoub and Brooke Adams.
Sponsored by TEAM DANIEL Running for Recovery from Mental Illness, a 501c3 charity.
Angela Brisbin
Angela is the Lead Administrator for Team Daniel and the Clozapine Community Facebook group. She is the Associate Producer for the documentary Into the Light: Meaningful Recovery from Psychosis. She is a full time nursing student pursuing a Master’s degree as a Psychiatric Nurse Practitioner. Her mental health advocacy includes serving as a board member for NAMI or Greater Kansas City, as well as being a NAMI-certified family support group facilitator and “Ending the Silence” presenter. Angela also serves as a mentor for the CURESZ Foundation.
In 2016 Angela’s father Gary who had schizophrenia passed away and her son Michael was diagnosed.
Michael Brisbin
Angela’s son Michael Brisbin has been in meaningful recovery from schizophrenia for six and a half years. He is a full time college student and works part time as a campus librarian. He’ll graduate in December with a Bachelor of Science degree in Social Work and a minor in Psychology. He plans to continue his education and obtain a Master’s degree as a licensed clinical social worker and work in the mental health field.
Michael is on the Board of Directors for NAMI of Greater Kansas City, and has founded NAMI on Campus groups at his previous community colleges and his current university. He also facilitates a weekly NAMI young adult Zoom support group.
Links:
https://www.intothelightmeaningfulrecovery.com/
https://www.
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“Chris had a "tumultuous" time several years ago, dealing with the onset of schizoaffective disorder, but has overcome addiction and homelessness and established stability for himself, while also being an extremely productive artist.
His artist name, as well as his social media handle, is xoradmagical.
He's done one film for the National Film Board of Canada and is working on another.
He's prolific on TikTok, where he describes his posts as "a personal virtual diary that everybody is allowed to look at."
Chris was diagnosed with schizoaffective disorder in 2017 at the age of 20. It's a mental health condition that includes hallucinations or delusions and mood disorder symptoms such as depression or mania.”
(source: cbc.ca)
Ever wonder what psychosis feels like. From someone who has experienced it and now has the insight so many of our loved ones do not have?
We’re lucky to have permission instead to repost this recording from The Schizophrenia Society of York University in Canada.
SSY collaborated with the Schizophrenia Society of Canada (SSC) for this - their 4th annual panel event, "Duality of the Reality: Living with Psychosis."
The purpose of this event is to hear real-life lived experiences and stories of success, hope, struggles and coping from individuals diagnosed with schizophrenia and psychosis.
LINKS:
cbc.ca story on Chris:
https://www.cbc.ca/news/canada/new-brunswick/twins-pabineau-first-nation-tristan-grant-chris-1.6883003?fbclid=IwAR0fNDPFLO1ZQvP_iJb4PNFHuOEMpTDGOPD_c04nZ0bM9ZiE_U9KaI76--o_aem_th_AbJBg2jdgv7pP_Wze-PqjOWv_HtBzAM-gkYz3_qYXcLrl7TayaWPV6HkGS2XyPy4wes
Schizophrenia Society of Canada:
https://schizophrenia.ca/
Schizophrenia Society of York Instagram:
https://www.instagram.com/ssyyorku/?hl=en
Christopher Grant linktree:
https://linktr.ee/xoradmagical
Matthew Dickson Mind Aid:
https://www.mindaid.ca/
Mindy and her book: https://mindygreiling.com/
Randye and her book: https://www.randyekaye.com/
Miriam and her book: https://www.miriam-feldman.com/
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This is Part 2 - Matthew’s Story. Here is his bio:
“Hi, I'm Matthew Dickson! I'm a Canadian who helps people in developing countries get access to basic mental health care. I've suffered from mental health problems myself (schizophrenia).
I bicycled across Canada when I was 20 in the middle of getting an engineering degree.
But at 22 I was diagnosed with schizophrenia.
It took awhile, but I successfully recovered from schizophrenia, and in 2023 I bicycled across Canada again, becoming the first person with schizophrenia to do so!
Recovery is possible! Now I'm trying to help others going through mental illness, primarily in developing countries, as they have it worse than we do in developed countries.”
Ever wonder what psychosis feels like. From someone who has experienced it and now has the insight so many of our loved ones do not have?
We’re lucky to have permission instead to repost this recording from The Schizophrenia Society of York University in Canada.
SSY collaborated with the Schizophrenia Society of Canada (SSC) for this - their 4th annual panel event, "Duality of the Reality: Living with Psychosis."
The purpose of this event is to hear real-life lived experiences and stories of success, hope, struggles and coping from individuals diagnosed with schizophrenia and psychosis.
LINKS:
Schizophrenia Society of Canada:
https://schizophrenia.ca/
Schizophrenia Society of York Instagram:
https://www.instagram.com/ssyyorku/?hl=en
Christopher Grant linktree:
https://linktr.ee/xoradmagical
Matthew Dickson Mind Aid:
https://www.mindaid.ca/
Mindy and her book: https://mindygreiling.com/
Randye and her book: https://www.randyekaye.com/
Miriam and her book: https://www.miriam-feldman.com/
iMOM Podcast
If you need a mom friend right now, you’ve come to the right place.
Listen on: Apple Podcasts Spotify
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Join our facebook page
Our websites:
Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman
Send a Text to the Moms
Ever wonder what psychosis feels like. From someone who has experienced it and now has the insight so many of our loved ones do not have?
We’re lucky to have permission instead to repost this recording from The Schizophrenia Society of York University in Canada.
SSY is the first and only schizophrenia awareness club organization at York University.
It raises awareness and humanizes individuals diagnosed with schizophrenia. They provide a voice for people with schizophrenia and other mental illnesses, and create an atmosphere of de-stigmatization at York University.
SSY collaborated with the Schizophrenia Society of Canada (SSC) for this - their 4th annual panel event, "Duality of the Reality: Living with Psychosis."
The purpose of this event is to hear real-life lived experiences and stories of success, hope, struggles and coping from individuals diagnosed with schizophrenia and psychosis.
I was delighted to join Christopher Grant (artist known as xoradmagical on social media), and Matthew Dickson (bicycled across Canada to raise funds for mental health services).
You’ll hear the panel in three parts - First, my story of the family POV when psychosis occurs, then Matthew, then Christopher - who reminded me so much of my son Ben’s experience, it almost felt like I was having the conversation with him I wish I could have - if there were insight.
LINKS:
Schizophrenia Society of Canada:
https://schizophrenia.ca/
Schizophrenia Society of York Instagram:
https://www.instagram.com/ssyyorku/?hl=en
Christopher Grant linktree:
https://linktr.ee/xoradmagical
Matthew Dickson Mind Aid:
https://www.mindaid.ca/
Mindy and her book: https://mindygreiling.com/
Randye and her book: https://www.randyekaye.com/
Miriam and her book: https://www.miriam-feldman.com/
iMOM Podcast
If you need a mom friend right now, you’ve come to the right place.
Listen on: Apple Podcasts Spotify
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Our websites:
Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman
In this episode, listeners tell us what's on their minds and we answer as best we can. We talk about anosognosia, incarceration, psychotic delusions, what we would have done differently if we'd known then what we know now, and lots more.
We open with a poem by a listener who is diagnosed with SZ:
Dale Walsh Poem - “I am a recovered reaching out help lessen the challenges encountered by family caregivers”
Source Of My Unique Thinking
Seeing laughter from challenged kid
Reminds me of all things I hid
About everything I did
And Joke I made was big mistake
As claim "I'm GOD" I did make
Which at last turned out to be fake
Though reason I sought out Godhead
Was due to a great sense of dread
I felt knowing I will be dead
At least physically one day
And so I found alternative way
To fight my body's slow decay
By saying I shall live forever
And pass into next life never
Not ready Earth ties to sever
So now I am guided by Lord
Who's my integrity restored
The ONE Whom I always adored.
4/28/24
National Poetry Month
Mindy and her book: https://mindygreiling.com/
Randye and her book: https://www.randyekaye.com/
Miriam and her book: https://www.miriam-feldman.com/
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Randye Kaye
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Miriam (Mimi) Feldman
A new book, Awakenings, has just been released. It describes the journeys of 28 remarkable people who are now thriving despite being diagnosed with SZ. The authors and contributors hope to show that with newer treatments, and also social support and therapy, recovery is possible.
Guests:
Bethany Yeiser, President of CURESZ Foundation (https://curesz.org/) and co-author of the book. The CURESZ Foundation offers advocacy, information, advice, as well as educational and supportive resources to enhance the understanding of schizophrenia as a treatable neuropsychiatric illness
Leif Gregersen, from patient to hospital faculty
Lesley McCuaig, athlete and mental health counselor
J Peters, author and social worker
Each guest will share their stories, and the moms will ask questions.
Links:
Awakenings Book:
https://a.co/d/9fMt9oz
CURESZ:
https://curesz.org/
Bethany TEDx Talk:
https://youtu.be/iPGd6l76l9A?si=ZZI42ecdh24MxZkS
CURESZ YouTube channel:
https://www.youtube.com/@cureszfoundation7671
Here is Lesley's website:
www.lesleymccuaig.com
Leif's blog:
www.edmontonwriter.com
J Peters' blog
https://mentalhealthaffairs.blog/
Mindy and her book: https://mindygreiling.com/
Randye and her book: https://www.randyekaye.com/
Miriam and her book: https://www.miriam-feldman.com/
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Our websites:
Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman
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.
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Our websites:
Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman
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.aspxTo 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!
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Our websites:
Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman
Guests are: Karlyn Nelson and Michelle Post
Karlyn Nelson
Survivor of Suicide Loss | Breast Cancer Warrior | RealtorMichelle 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:
- What is an “emotional heart attack”/
- What are "The Five Things" when dealing with suicide loss in the family?:
- 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).
- 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
- Acknowledge and validate a child’s feelings
- Reassure them they are not to blame
- Address their fears and anxieties
- Encourage them to continue routine activities, structure gives them a sense of security
- Include them in as many memorial / activities around the illness, injury, and death as they choose.
- Prepare them
- Let them make an informed decision
- Share info and allow participation
- 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 throug
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Join our facebook page
Our websites:
Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman
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)
- Normalize Ambivalence
- Find Meaning
- Adjusting Mastery
- Reconstruct Identity
- Revive Attachment
- 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/
help@treatmentadvocacycenter.org
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/
Want to know more?
Join our facebook page
Our websites:
Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman
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, LLChttps://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
eric@ericwtsmith.com -- 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 cont
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Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman
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/
Want to know more?
Join our facebook page
Our websites:
Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman
Ending the Criminalization of Mental Illness: Guest Judge Steve Leifman(Ep. 82)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.htmlThe 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 Recommendationshttps://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/
Want to know more?
Join our facebook page
Our websites:
Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman
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 law
Want to know more?
Join our facebook page
Our websites:
Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman
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/
Want to know more?
Join our facebook page
Our websites:
Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman
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/
Want to know more?
Join our facebook page
Our websites:
Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman
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.
Want to know more?
Join our facebook page
Our websites:
Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman
A Just Us Episode
- 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.
- 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.
- 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/
Want to know more?
Join our facebook page
Our websites:
Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman
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/
Want to know more?
Join our facebook page
Our websites:
Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman
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,
Want to know more?
Join our facebook page
Our websites:
Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman
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/
Want to know more?
Join our facebook page
Our websites:
Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman
Guest: Charla Collins
**Charla’s daughter Kylie 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.
Charla Collins what to do if your loved one goes missing
gordon-
Insane! incarceration and SZ
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.
The last time we invited our listeners to share their stories, the response was incredible - so we are doing it again!
Here are stores 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.
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:
- What 2 or 3 things would you most like families to know as you tell us about your work?
- 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)
- Are there other reasons family members contact you?
- What have you found helps families most?
- What help and tips can you offer families who have family members living on the street?
- Any success stories?
- 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:
DayK@treatmentadvocacycenter.org**
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“)
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“)
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.
Thanks to the Schizophrenia & Psychosis Action Alliance for choosing us to be the first to share this important event.
On May 24th, 2023, The Angry Moms joined the Schizophrenia & Psychosis Action Alliance and other advocacy groups for A Day of Action at the U.S. Capitol, in recognition of World Schizophrenia Awareness Day.
In a briefing dedicated to discussing barriers to clozapine treatment, two courageous survivors of psychosis disorders spoke about their experience with the FDA’s restrictions against clozapine treatment. Hear what they had to say in this moving and important episode.
Links:
Angry moms testimonials:
https://drive.google.com/drive/folders/1px4dkTi_ncNM7hxCj6ODJDDo1CZW1nlm
Schizophrenia & Psychosis Action Alliance: https://sczaction.org
https://www.facebook.com/sczaction/?locale=ms_MY
https://www.theangrymoms.com/post/in-their-own-words-analisa-and-michael
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 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.
First, updates:
Dr. Jeff Lieberman book event, Malady of the Mind ( episode 68 June 13)(and can we talk about teeth?)
Mindy: NAMI convention- update, , Joel Corcoran, CEO of Clubhouse International.
Mimi: Angry Moms, and introduce GUEST Sue Maida!
Links:
https://www.webmd.com/schizophrenia/features/schizophrenia-fda-hindering-clozapine?fbclid=IwAR2__DmXdnmuHqOqgc-myG4szJOfMfMyZt62uxeRHXyHKkmygQakkggw2X8
Team Daniel (facebook):
https://www.facebook.com/groups/www.teamdanielrunningforrecover.org?locale=ms_MY
Angry moms testimonials:
https://drive.google.com/drive/folders/1px4dkTi_ncNM7hxCj6ODJDDo1CZW1nlm
Schizophrenia & Psychosis Action Alliance: https://sczaction.org
https://www.facebook.com/sczaction/?locale=ms_MY
Mindy and her book: https://mindygreiling.com/
Randye and her book: https://benbehindhisvoices.com/
Miriam 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 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.
We interview the author of Safe, Wanted and Loved - (Patrick Dylan)
Winner of seven awards, including a National Indie Excellence Award and Best Indie Book Award.
"Anyone out there struggling to navigate mental illness should read this thoughtful book."
—Former U.S. Rep. Patrick J. Kennedy, founder of the Kennedy Forum
"Pat, we need to kill the dog." A chill ran down Patrick Dylan's spine as his wife spoke—psychosis had found their family again.
When a sudden mental illness struck his wife, Patrick Dylan found himself living with an eerie stranger. Scared and unprepared, he began a desperate battle to protect her from a mysterious disease, shelter their children from her bizarre behavior, and recover the woman he loved.
Patrick Dylan joins the voices calling for an end to the stigma surrounding mental illness. He and his wife, Mia, live in Florida and have two college-age children. They hope that sharing their family's story will spread awareness of the realities of mental illness and offer support to others who are either experiencing a mental health crisis or providing care to an affected loved one.
We Ask:
- Before you share your story, can you tell us what you most hope people learn from hearing it?
- So - tell us about Mia and your family, “before” during, and “after”?
- How has her illness affected your kids?
- We know SMI from a parental POV - what would you most like our listeners to know about what’s the same, and different, when it’s your spouse that becomes ill?
- You used pen names for yourself and for Mia, yet were amazed at how many were inspired to share their own stories. - What is your dream in fighting stigma? -
- What do you most worry about?
- What are Mia’s strengths?
- What do you wish you had known earlier?
- What else do you want us to know?
Links:
https://www.safewantedloved.com/
Audiobook: https://www.audible.com/pd/Safe-Wanted-and-Loved-Audiobook/B0B7VLPJFY?action_code=ASSGB149080119000H&share_location=pdp
Amazon:
https://a.co/d/9uIxFta
Mindy and her book: https://mindygreiling.com/
Randye and her book: https://benbehindhisvoices.com/
Miriam 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 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.
Social worker by heart, therapist by trade, Kat Thompson earned her MSW in 2022. She’s a mental health professional specializing in helping those in crisis. She also is a founder of Cascadia Cares ,”:building a world where it’s normal to help others.”
1. Tell us what a case manager's scope of work and responsibilities are.
2. What made you want to pursue this line of work?
3. What do you believe are the most challenging aspects of dealing with people who have SMI?
4. What changes would you most like to see in the system?
5. What is the hardest thing about your work?
6. How do you find the job as crisis line counselor as compared to case manager?
7. Tell us what else you are doing (ie. your non-profit and political work) and how it fits in to the big picture.
8. If there was one message you'd like to get across about mental health/illness and the system, what would it be?
9. what kind of training you received before each of your positions?
Links:
https://cascadiacares.org/
Hope for Troubled Minds: https://delightindisorder.org/hftm-call-for-submissions/
Mindy and her book: https://mindygreiling.com/
Randye and her book: https://benbehindhisvoices.com/
Miriam 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 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.
Psychosis is a huge part of many serious mental illnesses, including schizophrenia.
Jennifer Gerlach, LCSW, is a clinician with a mission: to spread a message of hope and recovery to encourage young adults living with serious mental illness.
She says, “Your Story Matters AND You Are More Than Your Story”
Her story will inspire you as well.
Recently, she completed a workbook geared toward young adults living with psychosis. The Psychosis and Mental Health Recovery Workbook: Activities for Young Adults from Act, Dbt, and Recovery-oriented Cbt. The release date is May 18.
In the book, she asks:
How can I use my voice to reduce the other voices I hear?
Who should I tell about my experiences with psychosis?
What steps should I take after a mental health crisis?
We ask:
- How do you encourage young adults experiencing psychosis as a therapist?
- What do you wish more therapists understood about the beginnings of serious mental illness?
- How can intervention in early psychosis affect the trajectory of these illnesses?
- How does anosognosia show up in early psychosis and how can families navigate this?
- What did you find helpful or encouraging from those around you when you were a young person?
- How does early psychosis tend to present and change as someone develops a Schizophrenia spectrum condition?
- What things have you found to help and hinder young people's mental health recovery and engagement in treatment?
- Tell us what you would most like people to know from hearing your story?
Links:
Jennifer’s website:
https://truestorycounseling.com/
Jennifer’s book: https://www.amazon.com/Psychosis-Mental-Health-Recovery-Workbook/dp/1839977329/ref=sr_1_5?crid=3L2UJOGW5ZYU4&keywords=psychosis+young+adults&qid=1676920229&sprefix=psychosis+young+adults%2Caps%2C118&sr=8-5
Mindy and her book: https://mindygreiling.com/
Randye and her book: https://benbehindhisvoices.com/
Miriam 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 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.
Leah Brennan. a Licensed Marriage and Family Therapist and a Certified Alcohol and Other Drug Counselor, joined us with her own questions in Episode 55 so as to improve therapist-family communication.
Her Episode had such a great response that listeners asked for more - so here it is!
Leah got connected to 3 Moms In the Trenches through her clients. Over the past five years, she has had four different parents on her caseload who were all confronting the reality that their sons met the criteria for a diagnosis of schizophrenia.
Leah realized that despite her excellent training, she was not adequately equipped to help these parents navigate the challenges they were facing.
Today Leah asks the questions she didn't get to include in the last episode that all center around the theme: "What Do Parents/Families Wish Their Therapist Knew About Schizophrenia?"
The discussion includes:
- Marijuana and Schizophrenia - what do we now know? What do families need to know.
- Can needs to be done about HIPAA?
- How can we better approach families with a possible early diagnosis, and why?
- What about recent moves to legislate involuntary intervention?
- Who should therapists alert and educate in the larger communities BEFORE kids reach the age when symptoms of SMI typically start to manifest?
Links:
Leah Brennan:
https://www.leahbrennantherapy.com/
mentioned in show:
Hope for Troubled Minds Project.
WHO: Those with brain illnesses or other mental health conditions and their loved ones.
WHAT: Submit a 1,000 word or less letter expressing gratitude for your loved one or the one you care for in spite of the circumstances.
WHY: Letters can promote a healing journey and also serve for advocacy as we humanize the issue of brain illness.
WHERE: Email it, along with a photo or image and an (optional) brief bio to me at: tony@delightindisorder.org .
Mindy and her book: https://mindygreiling.com/
Randye and her book: https://benbehindhisvoices.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.
Hakeem Al-Zayyidi is an Islamic motivational and inspirational speaker. Hakeem is a graduate of Royal Roads University in Victoria, BC.
It took Hakeem ten years to obtain his four-year undergraduate degree in Business and Sustainability.
His heroes and those who have motivated him to succeed include Malcolm X, LeBron James, Mohammed Ali, and Elyn Saks.
Hakeem has been dealing with schizophrenia since his early 20s.
The path he has chosen is to highlight the plight, stigma, and stories of himself and others who have mental illness.
His fascination with all that is basketball mirrors his quest to take shot after shot in his mission to speak to the uniqueness of mental illness in this world.
Questions:
- Before you share your story, can you tell us what you most want our listeners to learn from you today?
- What is your mission?
- Tell us your story - about 10 minutes (we may ask questions as you go)
- What are your 5 basketballs?
- Does your Islamic faith help with your inspiration?
- What do you most want to inspire people to do?
Links:
https://hakeeminspires.com facebook:
https://www.facebook.com/kareem.alzayyidi.96
Instagram/twitter - Hakeem Inspires!
Hakeem interactive speech
https://youtu.be/Lbw8NrlBKRU
Make A Change Canada Success story
https://youtu.be/YQLsZIp9oe
https://www.youtube.com/watch?v=_Sd4xm-gudM
Mindy and her book: https://mindygreiling.com/
Randye and her book: https://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.
Guest: Brian Stettin, senior advisor to NYC Mayor Eric Adams administration on severe mental illness.
Brian drafted the legislation that became Kendra's Law when he was an assistant attorney general in 1999, after a young journalist, Kendra Webdale, was shoved into an oncoming train by a young man from Queens with a long history of mental illness.
The Adams administration's new push is to have more severely mentally ill people brought to hospitals for psychiatric evaluation with or without their consent, and to change the state laws about the length of the stays.
This law is designed to apply to those who can't recognize their mental condition or take care of themselves, not just those who present an immediate threat to themselves or others.
Questions:
- Can you explain the plan in brief, and why it’s different from what has been happening in the past?
- What has been in support of this?
- What has been the opposition to this?
- Is there a plan in place to address the lack of hospital beds, supportive housing options, or other forms of long term care available for those people in need of help?
https://www.latimes.com/world-nation/story/2022-11-29/mayor-eric-adams-says-nyc-will-treat-mentally-ill-even-if-they-refuse
“These New Yorkers and hundreds of others like them are in urgent need of treatment, yet often refuse it when offered,” Mayor Eric Adams said at a news conference, noting that the pervasive problem of mental illness has long been out in the open. “No more walking by or looking away,” the mayor said, calling it “a moral obligation to act.”
more on Clubhouses:
https://www.startribune.com/mental-health-system-must-be-able-to-help-those-who-dont-know-they-need-it/600256700/
Mindy and her book: https://mindygreiling.com/
Randye and her book: https://benbehindhisvoices.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.
Guest: Kyleigh Leddy, author of “The Perfect Other: A Memoir of my Sister”
“I wish my sister gets better” - that became part of our guest's yearly birthday wishes, and more often too.
Our daughters have probably made that same wish - or at least they used to.
In 2019, Kyleigh won the New York Times Modern Love college essay contest for an essay she wrote about grieving her sister, Kait - and now it’s a book.
All Kait Leddy had ever wanted was a little sister. When Kyleigh was born, they were inseparable; Kait would protect her, include her, cuddle and comfort her, and, to Kyleigh, her big sister was her whole world.
As they grew, however, and as Kait entered adolescence, things began to shatter, and Kyleigh could only watch in horror as her perfect sibling’s world collapsed around her. Kait was institutionalized with what would eventually be diagnosed as schizophrenia, leaving Kyleigh and their mother to handle the burden, shame, and guilt alone.
Then, in January 2014, Kait disappeared.
Her sister tells us about the loss, their bond, the story, the stigma - in her latest book.
Questions:
1- what do you most want people to know from your story, your family story?
2 - tell us what Kait was like before SZ, and as it developed.
Did kait’s concussions cause her SMI?
3 - you and your parents - how are you now?
4 - does Kait leave a legacy ?
5 -is the sibling experience often ignored in SMI? What is unique to sibs?
6 - your writing process etc. and links
Links:
https://kyleighleddy.com/
https://www.nytimes.com/2019/05/03/style/modern-love-sister-vanished.html
https://www.amazon.com/dp/0358469341?tag=harpercollinsus-20
Mindy and her book: https://mindygreiling.com/
Randye and her book: https://benbehindhisvoices.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.
Guest: Michelle Hammer
Michelle Hammer is a Schizophrenia Activist and spends her time passionately fighting stigma.
Michelle was diagnosed with schizophrenia at 22 after a misdiagnosis of bipolar at age 18.
**At 27, Michelle decided to use her artistic talents and fearless personality to do something that could benefit the mental health community.
She founded Schizophrenic.NYC - a clothing brand with the mission of reducing stigma by starting conversations about mental health.**
We Ask
What did Schizophrenia feel like for you? What is your story?
How are you now, and what treatment works for you?
NYC Mayor Adam’s homeless initiative - thoughts?
What are your thoughts about involuntary hospitalization?
How important is coordinating discharge planning once a person is in the hospital?
Do you think it is wise to have cops make determinations of mental fitness?
The connection between homelessness and mental illness.
Links:
https://www.schizophrenic.nyc/
https://www.webmd.com/schizophrenia/video/video-living-with-schizophrenia
https://podcasts.apple.com/us/podcast/a-bipolar-a-schizophrenic-and-a-podcast/id1594381452
https://nymag.com/intelligencer/2023/01/eric-adams-mentally-ill-homeless-nyc-hospitals.html
https://www.latimes.com/world-nation/story/2022-11-29/mayor-eric-adams-says-nyc-will-treat-mentally-ill-even-if-they-refuse
“These New Yorkers and hundreds of others like them are in urgent need of treatment, yet often refuse it when offered,” Mayor Eric Adams said at a news conference, noting that the pervasive problem of mental illness has long been out in the open. “No more walking by or looking away,” the mayor said, calling it “a moral obligation to act.”
Mindy and her book: https://mindygreiling.com/
Randye and her book: https://benbehindhisvoices.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.
Seven listeners share their stories of SMI (Serious Mental Illness) in a loved one - and, in one case, in themselves.
This episode grew out of a facebook post. We had so many volunteers to share their powerful stories that we may do more episodes like this, if you find it valuable and moving. I know we did.
Show notes:
Judith Smith's Support group info:
**judithrsmith@difficultmothering.com
Look Again podcast:
https://podcasts.apple.com/us/podcast/look-again-mental-illness-re-examined/id1557736942
Mindy and her book: https://mindygreiling.com/**
Randye and her book: https://benbehindhisvoices.com/
Miriam and her book: https://www.miriam-feldman.com/
Linda's "manual":
I’d like to share some of my manual that I’ve created along the way:
· Learn how to distinguish healthy language, judgement and behaviors from unhealthy or unsafe ones
· Listen between the lines-try to understand what’s really being communicated-even when it seems so illogical
· Clarify what is acceptable and what isn’t, for you, in your life.
· Create a ‘board of directors’ for yourself…who will you turn to for various aspects of managing your loved one’s condition.
I now engage only with the healthy parts in conversation especially if it starts to escalate. Ignore the unhealthy.
I provide what I can to keep my family member safe, fed, housed, etc.-- When I’m too burned out, I allow myself to say, sorry I’m not able to do that now. I can do it later, tomorrow, etc.
I’ve reclaimed my home and decide when I can interact with him and when I cannot. Keep limits clear, factual rather than punitive, and make logical sense, rather than a knee jerk reaction to frustration.
FInd ways to connect and love in the face of adversity, unfounded anger and blame
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 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.
What if, for families coping with SMI (serious mental illness) in a loved one, the holiday season is "the most difficult time of the year"?
The 3 Moms Discuss - Holidays past, in joy, crisis or grief - and how we currently celebrate what is...the best we can.
Some tips we share:
- Lower Holiday expectations and Marketing Myths (e.g., perfect holidays)
- Plan Ahead - even for possible disaster
- Have a Plan B - and maybe C, D...
- Include Your Loved One as Much as Possible, Especially if They Can Help
- Don't Let the "Unsqueaky Wheels" feel ignored
- Cherish the Good Moments - Find the Positives
- Be Willing to Change Traditions as Needed
- Set and Enforce Limits - Know Your Boundaries
- Imagine How it Is for Your Loved One
- Family Love Matters - You Do Make a Difference
Happy (and Realistic) Holidays to You All!
Want to Share Your Story in a Voice message?
https://benbehindhisvoices.com/tell-us-your-story/
Resources:
Look Again Podcast: https://www.bcss.org/lookagain/
Tips from NAMI: https://www.nami.org/Blogs/From-the-CEO/December-2021/The-Most-Difficult-Time-of-The-Year-Mental-Health-During-the-Holidays
Mindy and her book: https://mindygreiling.com/
Randye and her book: https://benbehindhisvoices.com/
Miriam and her book: https://www.miriam-feldman.com/
guests:- Teresa Pasquini and Lauren Rettagliata, 2 California Moms on a Mission for a System of Care that Works
From NAMI CA website: Housing That Heals project:
“As two California moms on a mission, we invite you to join our journey across the state and into our future dreams for Housing that Heals for Families Like Ours.
Housing That Heals is more than a house, a program, or a room key. It is a system of care that wraps a person in all of the necessary medical, clinical, rehabilitative, and social supports that they need in order to live and die in dignity.
We began this journey in 2019, using years of experience as moms, advocates, and community leaders as our compass. We set out looking for solutions that would mend our broken hearts and the broken system. We were hopeful that this would be the year that California would recognize that people who live heroically with serious mental illness need more than “Housing First.” First, they need a full system of care that provides care before, during, and after homelessness, crisis, hospitalization, or incarceration. Housing That Heals is a prevention and intervention plan that will systemically flatten the harm curve for those who live with serious mental illnesses.
We ask:
- What experiences have you had that make housing so important to you?
- Is there disparity in your state between funding for housing for those with a Serious Mental Illness and Intellectual Developmental Disabilities?
- Why Housing First and Harm Reduction are not HUD principles that are tied to building affordable housing do not work for many with a Serious Mental Illness?
- Does Ideology drive the disparity for those with a Serious Mental Illness?
- Why does your paper talk about marrying the Recovery Model with the Medical Model?
- What criteria did you use to measure if the housing you visited was Housing That Heals?
- What Housing have you seen that seems to embody Housing That Heals?
- Is it possible for this housing to be accessible to those who are on Medicare and enrolled in their states' public system of care?
Links:
https://namica.org/community-voices/team-nami-spotlight-housing-that-heals-project-report/
The paper:
https://hth.ttinet.com/Housing_That_Heals_2020.pdfOur Housing That Heals Facebook Page:
https://www.facebook.com/housingthatheals
Here is the NY Times Article:
https://www.nytimes.com/2022/02/16/opinion/parenting-adult-children.html
Mindy and her book: https://mindygreiling.com/
Randye and her book: https://benbehindhisvoices.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
Guest: Leah Brennan, Leah Brennan, LMFT, CADC
Leah Brennan is a Licensed Marriage and Family Therapist and a Certified Alcohol and Other Drug Counselor.
Leah got connected to 3 Moms In the Trenches through her clients. Over the past five years, she has had four different parents on her caseload who were all confronting the reality that their sons met the criteria for a diagnosis of schizophrenia.
Leah realized that despite her excellent training, she was not adequately equipped to help these parents navigate the challenges they were facing.
Leah has a lot of questions for the 3 Moms community that all center around the theme: "What Do Parents/Families Wish Their Therapist Knew About Schizophrenia?"
She asks us:
How can mental health providers better communicate a diagnosis of SMI when we make it?
What do therapists/mental health providers need to understand about HIPAA?
What should therapists know about THC or other substances being used in relation to dx of SMI?
What should caregivers/advocates/parents look for when partnering with a psychiatrist and treatment team for their child?
What kind of mental health support is useful when the family isn’t in crisis/loved one is stable?
What needs to be taught at graduate level courses for LMFTs, LCSWs, LCPCs , etc. re: treating families impacted by a diagnosis of SMI?
How can/Who should therapists alert and educate in the larger communities BEFORE kids reach the age when symptoms of SMI typically start to manifest?
We ask Leah:
- What can therapy do for me as a parent of a child with a diagnosis of schizophrenia?
- How would you assure someone who wasn't fully comfortable engaging in therapy that it would be a good use of time/validating?
Links:
Leah Brennan:
https://www.leahbrennantherapy.com/
Mindy and her book: https://mindygreiling.com/
Randye and her book: https://benbehindhisvoices.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.”
In 2022, the memoir Tell Me I’m Here, went from page to stage at the Belvoir Theatre in Sydney, Australia - to universal acclaim - like “a bold work, tackling difficult subject matter with empathy and insight”- and we have the playwright here with us today, with her own story to tell.
We are also thrilled that the theatre company used our podcast as part of their research.
Please welcome, from the UK, Veronica Nadine Gleeson
We ask:
- What drew you to this project? Any personal connection with schizophrenia or other serious mental illness?
- Tell us about the process of adapting the work to stage - and when did you begin the play?
- Where else did you turn for research?
- What did yo learn that affected you deeply?
- Has it been produced elsewhere?
- Can we bring it to the US?
- What’s ahead for you?
Links:
https://belvoir.com.au
Belvoir Theatre on You Tube:
https://www.youtube.com/user/Companybbelvoir
Veronica Nadine Gleeson representation:
https://shanahan.com.au/client/veronica-gleeson/
Tell Me I’m Here:
https://www.amazon.com/Tell-Me-Here-ANNE-DEVESON/dp/0140098461
Mindy and her book: https://mindygreiling.com/
Randye and her book: https://benbehindhisvoices.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”)
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.”
A Plan of Action for COD (co-occurring disorders*): The Harris Project
*mental health challenges plus and substance misuse or addiction
What comes first: substance use or mental health challenges? It can happen either way.
**Adolescence is a time of change and challenge. It is also during this time that most mental health disorders arise. In fact, 22% of teens 13-18 have a diagnosable mental health and/or addictive disorders, and 50% of all cases of mental health disorders arise by the age of 14 and 75% by the age of 24 (MHFA.org).
We 3 Moms have been there. We share our family story in books and in this podcast, to help others.**
Our guest has the same mission - to turn heartache into action, and to honor her son. She was recently featured in the NY times, and she’s here with us today.
Stephanie Marquesano, mom of Harris (who died at age 19 and had a COD, or co-occuring disorder), is founder and president of the project named for him - with a mission to change the way these two conditions are noticed and treated.
We ask:
- Tell us about Harris. If you had to tell the story of his life before the illness and after the illness in five minutes what would you want us most to know?
- Early signs: you said in NY times “He was crawling out of his own skin half the time.” - is there anything you wish you had known, anything you wish someone else had known or done?
- Can you share your journey to find psychological and psychiatric help?
- The combination of substance abuse and mental illness often co-occurs, and yet… not treated together . Talk to us about the “addiction treatment nonsystem” and what should replace it.
CODA goals include:
- Increased awareness and understanding of co-occurring disorders for youth.
- Increased early intervention for mental health challenges and substance misuse leading to a decline in incidence of youth mental health crises, drug misuse, addiction and overdose.
- Increased likelihood that those already impacted by co-occurring disorders will seek help and support.
- Raise a generation without the stigma typically associated with mental health challenges/substance misuse.
- Encourage youth to positively impact their peers/communities by building connections to each other and being a link to resources.
LINKS:
https://theharrisproject.org/ Twitter: @theharrispro
Facebook: https://www.facebook.com/theharrisprojectCOD/
Instagram: https://www.instagram.com/theharrisprojectcod/
Mindy and her book: https://mindygreiling.com/
Randye and her book: https://benbehindhisvoices.com/
Miriam and her book: https://www.miriam-feldman.com/
As a psychiatrist and system administrator who grew up with a mother with schizophrenia, Dr. Gary Tsai offers an insider’s perspective on the process of seeking care for serious mental illnesses, informed by both firsthand personal and expert professional experiences.
Dr. Tsai is also an award-winning documentary filmmaker and author, physician who is board certified in psychiatry and addiction medicine, and the director of the largest substance use system in the nation.
We’ll talk about his story, his documentary called Voices, and the tips in his his new book titled Against All Odds, including:
- How to approach impacted loved ones and resistance
- Understanding behavioral health systems, policies, programs, laws, practitioners, and payers
- Identifying a good clinician or care team
- Being an effective advocate
- … And much more.
Against All Odds offers tools and strategies to navigate the recovery journey and will reshape your understanding of serious mental illness and behavioral health systems!
LINKS:
http://voicesdocumentary.com/film/
www.AgainstAllOddsToday.com
Mindy and her book: https://mindygreiling.com/
Randye and her book: https://benbehindhisvoices.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”)
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.”
Living with schizophrenia or other SMI (Serious Mental Illness) in yourself or in your family is like a game of “chutes and ladders” - you’re never really out of the woods, but there are wins (progress, good moments and memories) and hopes along the way.
Mimi, Mindy and Randye catch up on the latest family journeys with SZ - life-threatening crises, changes in treatment, finding hope and joy, and resilience - in this opening episode of Season 3.
We also preview some upcoming guests, and congratulate the production “Tell Me I’m Here” - a powerful Australian theatre adaptation of Anne Deveson’s memoir of the same name. Cast and director listened to our podcast for inspiration and understanding, and their show is getting rave reviews and increasing awareness of schizophrenia in the family. - thank you!
LINKS:
https://belvoir.com.au/productions/tell-me-im-here/
https://www.theatretravels.org/post/review-tell-me-i-m-here-at-belvoir
Mindy and her book: https://mindygreiling.com/
Randye and her book: https://benbehindhisvoices.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”)
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. She has served on the national board of the National Alliance on Mental Illness and is the current president of her NAMI county chapter. Her acclaimed memoir is “Fix What You Can.”
SZ 3 moms Ep 50: Help! I Don’t Understand SSI/SSDI
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 ask:
Clarification:
Dani would like to clarify something from the podcast in which I participated. The maximum a disability attorney or non-attorney advocate can charge is 25% of an applicant's backpay, up to a maximum of $6,000.
SSI/SSDI/SSA - please explain the differences!
Who makes the disability determination? (DDS)
What are the myths about SSI? Will my loved one have to stop working?
How to apply - steps
Do I need an attorney?
What is SOAR? Can they help? How much does it cost?
What materials/records do I need to gather/create?
And more
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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“)
Pete Earley is a storyteller whose books include four New York Times bestsellers, likeThe Hot House and the 2007 Pulitzer Prize finalist Crazy: A Father’s Search Through America’s Mental Health Madness.His years as an investigative journalist include six years at The Washington Post. Pete is a tireless advocate for mental health system reform.
Many listeners ask: What about the Dads? Pete Earley knows. He was most recently seen on the PBS documentary “Hiding in Plain Sight” with his son Kevin Mike Earley.
In today’s episode we hear their family story, and many thoughts on what we’d like to change about the system - including NAMI. We also touch on the new 988 system, and once again Judge Stephen Leifman in Florida, who envisioned a reform program that would help people reintegrate into society by helping them with housing, relationships, and health care—especially mental health care.
We ask:
- Tell us your story, and Kevin’s story - how have things changed since you wrote “crazy”?
- 988 is rolling out - comments?
- What has been your experience as a “Dad in the Trenches”? Do you think it’s different from the way Moms tend to handle mental illness in the family?
- Did your book, Crazy, inspire any changes in the mental illness/prison system?
- What are your thoughts on the recent direction of NAMI? Are there other organizations who are more about SMI (serious mental illness)?
- Tell us about Hidden in Plain sight and what that experience meant for Kevin - and for you.
- What are the most pressing issues today that you are fighting for?
- What would you most like other Dads to know?
Links: http://www.peteearley.com/
Judge Leifman speech:
https://www.youtube.com/watch?v=UFbyI6I0Mlk
**The Lifeline and 988 - https://988lifeline.org/current-events/the-lifeline-and-988/
NPR 988 story:
https://www.npr.org/sections/health-shots/2022/07/15/1111316589/988-suicide-hotline-number**
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“)
Episode 48: “Our Son Died with His Civil Liberties Intact” - and What We Did Next
One Story of Bedlam - and Activism - in America’s Mental Health Crisis
Guests: Norm Ornstein and Judy Harris
You are about to meet a couple - Norm Ornstein and Judy Harris - who tragically lost their son Matthew in 2015. Matthew had struggled with mental illness for over a decade, and , as listeners of this podcast well know - that means the entire family was affected.
After Matthew’s death, Norm and Judy (along with their son Danny), created a foundation in his name, which you’ll learn about in the second half of the podcast. Another project of theirs is the PBS documentary film, The Definition of Insanity looks at one judge’s innovative efforts in Miami to prevent people with mental illness from being treated like criminals…narrated by Norm’s longtime friend Rob Reiner.
First, we ask them about Matthews’ story, and, as you will hear, these highly successful activists still live with the feelings that all similar families face - guilt, confusion, anger, and grief. Hear their story…and how they are working to find ways of “taking a tragedy and trying to make something positive,”
Links:
The Matthew Harris Ornstein Memorial Foundation
https://www.mornstein.org/
The Definition of Insanity Documentary:
https://www.pbs.org/show/definition-insanity/
Book :Bedlam: An Intimate Journey Into America's Mental Health Crisishttps://www.amazon.com/Bedlam-Intimate-Journey-Americas-Mental/dp/0525541314/ref=tmm_hrd_swatch_0?_encoding=UTF8&qid=1656544912&sr=8-1
https://www.washingtonian.com/2020/04/30/the-deeply-personal-story-behind-the-pbs-documentary-the-definition-of-insanity/
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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“)
Just the Moms, addressing Q’s and giving updates
We talk about:
- Our recent advocacy (legislation and keynote speeches)
- SEARCH: what families need (Support, Education, Acceptance, Respect, Communication Skills, Hope)
- Updates
- …and address e-mails and facebook comments like
Will I ever feel "normal" again? The grief and anger still take my breath away some days. I'm sorry to vent. I will start listening to the podcasts soon. Thank you!
How do you all prepare for when your sons get discharged from the hospital but you can tell they aren’t stable yet? I’ve listened to a ton of your podcasts and they are so enlightening- but I’d be interested to hear more of the technical details of transitioning a loved one out of or into the hospital and out of/into group homes for someone not yet familiar with navigating the patchwork of mental health services.
What would we tell providers if we could?
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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“)
Guest:Freddie de Boer
On May 17th, the NY Times Magazine published an article by Daniel Bergner, based on his book The Mind and the Moon.
The article reports on psychosis , from the point of view of Caroline, who is beset by the hallucinations of psychosis.
Daniel Bergner explores how to seek a deeper engagement with ourselves and one another—and how to find a better path toward caring for our minds.
Or - does he leave out a huge piece of the picture?
So many comments about the article, which seemed biased toward the Hearing Voices Network. One such response, from Freddie deBoer, has generated over 7,000 YouTube views so far.
Links:
NYTimes article:
https://www.nytimes.com/2022/05/17/magazine/antipsychotic-medications-mental-health.html
Freddie deBoer’s response:
https://youtu.be/yKB6F_VYuZY
https://freddiedeboer.substack.com/p/my-response-to-daniel-bergners-new?s=r
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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“)
According to NAMI, there is an undeniable and growing mental health crisis that demands both attention and action.
Covid-19 has only made things worse.
Nearly 2 in 5 adults struggled with mental health issues in 2020, compared to about 1 in 5 adults before the pandemic. Among adults with mental illness, only 46% received treatment in 2020, a number that is far lower among Black Americans (37%), Hispanic/Latinx (35%) and Asian Americans (21%).
The crisis is especially acute among youth and young adults, as trends that had already predated the pandemic have turned even more ominous.
In 2020, 75% of people aged 18–24 reported at least one mental health or substance use concern.
In 2021, emergency department visits for suspected suicide attempts were 51% higher among adolescent girls than in 2020.
Today's guests are working to make things better for their fellow students who have mental illness issues.
They are Mindy’s cousin's daughter, Claire Orth, who just graduated from the University of North Dakota, and Taylor Keane, her granddaughter, who will graduate from high school in Washington D.C. in two weeks.
1.Please introduce yourself and share how you became interested in mental illness.
2. What do you see on your respective campuses so far as fellow students experiencing mental illnesses? Could you give a specific example?
3. How have those observations/experiences inspired you to help? (Claire took some training at her school so she could better help fellow students and chose schizophrenia for her senior capstone projects. Taylor also chose mental illness for a school project and for her Youth In Government legislation. She's currently doing an internship at the Treatment Advocacy Center where she is focusing on youth.)
4. All of us wrote in our books about missing early signs of our sons' illnesses. Do you think your friends' parents today are doing any better?
5. What would you say to parents whose children are in high school or college and experiencing signs of mental illness?
6. Are your friends aware that young people who smoke marijuana are five times more likely to have psychosis?
7. Have you noticed anything that your schools have done that have helped students? Is mental illness part of the curriculum? School support staff?
**Links:
https://www.mentalhealthfirstaid.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“)
When Mental Illness happens, it happens to the whole family.
Do families turn to their houses of faith for help ? And if they do, what happens?
We explore this in Episode 44- with 3 moms, one Rabbi and one Pastor. It doesn’t cover all faiths, of course, but it’s a start.
Guests: Rabbi Evan Schultz, Congregation B’Nai Israel, Connecticut
Rev. Mariah Furness Tollgaard, Pastor
Questions:
- Are you aware, as a faith leader, about mental health issues (especially SMI) in your congregants?
- What does your faith say about SMI?
- How do you, as a faith leader, respond to families dealing with mental illness?
- Is learning about Mental Illness part of your training?
- What part does stigma play in talking openly about SMI? - is it taboo to talk about it?
- How can we as activists/advocates help faith leaders serve their constituents?
According to Research (lifeway.inc):
- Only a quarter of churches (27 percent) have a plan to assist families affected by mental illness according to pastors. And only 21 percent of family members are aware of a plan in their church.
- Few churches (14 percent) have a counselor skilled in mental illness on staff, or train leaders how to recognize mental illness (13 percent) according to pastors.
- Two-thirds of pastors (68 percent) say their church maintains a list of local mental health resources for church members. But few families (28 percent) are aware those resources exist.
- Family members (65 percent) and those with mental illness (59 percent) want their church to talk openly about mental illness, so the topic will not be a taboo. But 66 percent of pastors speak to their church once a year or less on the subject.
Links:
NAMI FaithNet
Guide for Faith Leaders from psychiatry.org
Yom Kippur Sermon re mental illness
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“)
We all agree (and letters and comments confirm) - the family feels lost. Doesn’t know what to do, where to turn, to get help with:
Finding options and services
Sorting through them
Place to vent and share/run through ideas
Our guest today provides that kind of help, and she is here today to share some tips with us.
Guest, Bonnie Lane, (from Chicago area)
For more than two decades, Bonnie has worked privately with families dealing with mental health issues. She has counseled individuals and families as they successfully navigate the maze of care and resources available for young and older adults. Helping families in times of crisis is her mission and her passion. - The mission? - SUPPORT.
Bonnie will support you on your road to acceptance of the new normal.
- Why does the family feel so stuck and unsupported? (and need services like yours)?
- Do you have a personal story that led you to do this work?
- What are the top areas of need? (legal? social services - benefits etc? emotional help for family?)
- What are the top tips you can share with our listeners to get the information, ideas, and support they need?
- Re your services:How much does it cost?
- Are you aware of other companies like yours in your area or other areas?
- Does any insurance cover your services and if so do you take MA?
- What you do sounds important and needed, but is it only available for those with financial resources?
Links:
https://thefamilysupportservices.com/
Here's the YouTube link for the CATCH presentation.
CATCH L and L - Creating a Game Plan
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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“)
Guests: Karen Comba, author of The Snipers We Couldn't See: A Memoir of Growing Up with My Mother's Schizophrenia
And Christina Lord, mental health advocate (Canada) daughter of a dad with SZ,
First, your stories.
How has the experience impacted you (Karen writes about life “with footprints on her back”)
How did writing or sharing about it help? Or did it?
How did your experience- and the unpacking of it - inform the work you now do?
What do you most want other children of parents with SZ to know?
What do you want others to know - teachers, practitioners, other adults in a child-of’s life?
**How to find happier places for your mind?
Links:
https://christinalord.ca/
https://www.karencomba.com/
Books we mention: (besides our own, Ben Behind His Voices, He Came In With It, and Fix what You Can)
She's Not Herself, by Linda Appleman Shapiro (formerly published as Four Rooms Upstairs)**
I'm Not Alone: A Teen's Guide to Living with a Parent Who Has a Mental Illness, by Michelle D. Sherman
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“)
Problem: Getting our Homeless off the Streets and into Housing
Many of our seriously mentally ill wind up in jail, dead, or homeless.
It doesn’t have to be that way - and solutions in places like Trieste, Italy can show us the way, Heart Forward.
Meet Kerry Morrison, and discover a cost-effective, empathetic solution that lives up to “The human right to a sense of purpose.”
Can a transformative care strategy, tested and proven in Trieste, Italy, work in Los Angeles, California?
- We hear you.
- We see you.
- You are safe here.
- Your voice matters.
Resources and links:
www.accoglienza.us.
https://www.heartforwardla.org/podcast-season-1
https://www.heartforwardla.org/
Episode of Kerry’s podcast with Dr. Roberto Mezzina:
https://www.buzzsprout.com/1283882/8741627
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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“)
We invited listeners to come on board for this episode, for some Q and A, and wow did they come through!
This is one of our most powerful shows ever, thanks to you. Yes, if you want, we will do this again.
We discuss:
how we wrote our books
How to help the Treatment team include us - even if they are reluctant (HIPAA, confidentiality, etc.)
Planning for when we are no longer able to help
The value of our anger, the value of our love
Lack of training for many practitioners re SMI (serious mental illness)
Conservatorship/Guardianship
SSI/SSDI
Positive life lessons for us in all this...
and much more.
Want us to cover a topic? Facebook page @Schizophrenia3Moms
Twitter @SZ3MomsTrenches
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“)
If you have a mental illness, how does isolation add to the challenges you face?
Guest (and self-described schizophrenic) David "Eli" Israelian talks about his story, and two incredible projects:
Painted Brain | Putting Brains To Work! We're building community-based solutions to mental health challenges and the impact of social injustice through arts, advocacy, and enterprise. -
**Painted Brain creates lasting community-based solutions to mental health challenges and the impact of social injustice through arts, advocacy, and enterprise.
and Peer Mental Health:**Community wellness meetings
Social and Emotional Support Groups
Faith- based support groups
Workforce development
Stipend & job opportunities
links:
https://www.facebook.com/PeerMentalHealth/
https://www.peermentalhealth.com/
https://paintedbrain.org/
**We talk a lot about the emotional stress and shock of caring for someone with SMI, but what about the financial shock? Is debt an issue? How does your loved one handle money? How do you get services? Do the wealthy have better support? Do families have to go broke to have support, and what is the additional emotional effect of money on the family mental health?
Savannah Price, in the UK, is doing research on this - and today we turn the tables and let her interview us.
Savannah is building a company to improve the mental and financial resilience of young people with mental health problems by targeting the vicious cycle between money management and poor mental health.**
We talk about:
- financial shocks
- the vicious cycle between poor mental health and dysregulated spending
- financial literacy
- Family responsibility
- And look at another, international, health system of “care”
About Savannah:
**Savannah is originally from South Africa, but moved to the UK for university. She started her career as a geologist before launching an Equestrian competition and sales business in Ireland. She most recently completed her MBA at the University of Oxford and is starting a company in Mental Health.
She has a strong history of mental illness and disability in her family - she has a sister with schizophrenia, another with bipolar and her youngest sister has autism with significant learning disabilities.
Given her lived experience, she is currently doing research into how money and mental health are interrelated, and how having serious mental health problems impacts families financially and emotionally.**Not only do many mental health problems result in financial strain for young people and their families, but ultimately the breakdown of supporting relationships over time.
To address these problems, we are working to develop personal “relapse signatures” for young people who suffer from dysregulated financial behaviours due to mental health problems such as personality disorders, bipolar, psychosis, depression, anxiety, gambling, substance use disorders and ADHD.
We do this by overlaying spending patterns with other data you can get from a mobile phone, to track symptoms of poor mental health.
This then allows us to tailor products and services according to their goals/needs, and improve wellbeing, both financial and otherwise.
What it can also do, is give their loved ones insight into our users' mental and financial state in real-time, to flag risk and possibly intervene before there is a crisis - all the while advocating for agency and empowerment. Our mission is to blaze the trail for preventative healthcare through behavioural finance.
If anyone wants to learn more or to get involved with the research and product design - they are more than welcome to reach me on sav@price.mba, or my LinkedIn.
Want us to cover a topic? Facebook page @Schizophrenia3Moms
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“)
Rachel Streiff: Mental Health Advocate, Mentor to SMI Caregivers, Data analyst for Team Daniel Running for Recovery from mental illness, (Dr. Robert Laitman’s organization), chemical and biomedical engineer with a legacy six sigma black belt certification.-
**Mother of Carson (episode 22 ), who has schizoaffective disorder and is currently a full-time college student getting degrees in Math and Computer Systems Engineering.
if you enjoyed Episode 22, Carson's story - hear his Mom's side of the advocacy and how she insisted on the best available care - a standard some practitioners do not follow. A very powerful hour.**
Links:
rachel.streiff@yahoo.comTeamDanielRunningForRecovery.org
Clozapine facebook page
Team Daniel facebook page
SZ 3 Moms Facebook page
Get on the mailing list:
rslaitman@aol.com
Dr. Laitman’s Book:
https://www.amazon.com/MEANINGFUL-RECOVERY-Schizophrenia-Serious-Clozapine/dp/172748424X
New finger-prick Point-of-service test
Who Are the 3 Moms?
Want us to cover a topic? Ask us a question? Facebook page @Schizophrenia3Moms
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“)
“Does anybody have a map?...” - a lyric from the show Dear Evan Hansen, sung by the parents of the show’s adolescent children.
If you are a “Mom in the Trenches” of serious mental illness in your child, you also know the feeling - all too well .
Judith R. Smith, (mother, psychotherapist, professor, researcher on women’s issues as they age) noticed that the topic of mothering challenging adult kids was a topic that had no map - at least on the bookshelves.
So she researched, and wrote one, and it’s available this month.
We ask:
- Why this book?
- What did you learn in your research and interviews with mothers of challenging adult children?
- What does shame have to do with it?
- “ Unpaid and unrecognized maternal caregiving work continues to limit women’s quality of life” - what can mothers do to help themselves?
- Did you learn any tips for helping or handling our challenging adult kids?
“Difficult brings to life the conflicts that arise for mothers who are confronted with the unexpected, burdensome, and even catastrophic dependencies of their adult children associated with mental illness, substance use, or chronic unemployment”
Links:
Amazon - get the book!
Twitter: @JudithRSmithPhd
Judith’s facebook page: Difficult Mothering
judithRSmith@difficultmothering.com
Difficult Mothering Website
JASA - for aging services in NYC
Who Are the 3 Moms?
Want us to cover a topic? Ask us a question? Facebook page @Schizophrenia3Moms
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“)
Focus on BIPOC Mental Health Challenges and Outreach - guest, Sabah Muhammad, DJ Jaffe Advocate
**Sabah has a brother with mental illness, and is an advocate for him, and more: she is legislative and policy counsel with Treatment Advocacy Center (see episode 31).
SMI is challenging enough, but what does racial inequality add to the picture? Sabah references one of her favorite quotes: "Racism isn't the shark in the water, it is the water."
Or: is it more like smog, that we can each do something to help clear?
According to evermindgroup.com,**
“Black, indigenous, and people of color (BIPOC) are impacted both in terms of increased risk for mental health problems and in their access to mental health care. Unfortunately, systemic barriers and inequities prevent those in BIPOC communities from receiving the behavioral health treatment they need. When BIPOC communities are disproportionately affected during moments of national crisis, this problem is exacerbated. “
Is the system imbalanced? Biased?
Let’s find out.
Questions:
- Tell us your story and why you do the work you do.
- Tell us about your recent report on inequities in diversion programs.
- What other inequities do you see?
- Does the current mental health system's often poor treatment of families especially harm families of color?
- Are there any ways our podcast could be more welcoming to BIPOC people? Should we publicize your podcast in any way? If so, how?
Links:
https://www.nami.org/Your-Journey/Identity-and-Cultural-Dimensions
https://www.treatmentadvocacycenter.org/
Who Are the 3 Moms?
Want us to cover a topic? Ask us a question? Facebook page @Schizophrenia3Moms
Randye Kaye -Broadcaster, Actress, Voice Talent, Speaker, and Author (“Ben Behind his Voices”)
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“)
An Acid Trip in college led to “never feeling the same again” - to actions to feed drug habits, to inner thoughts of suicide and harm, a diagnosis of schizophrenia, treatment - and now, a Master's Degree and full-time work.
The 3 Moms ask Ryan the questions our sons aren’t ready to answer.
- What does psychosis feel like?
- What is the effect of weed on your symptoms?
- Do you tell potential new friends you have schizophrenia?
- What support helps you? Family? Friends?
- What are your “extended thoughts” like?
- Why did you ask for voluntary hospital stay?
- What advice would you give others with sz? What would a peer support network mean to you?
Ryan says:
“Being diagnosed with schizophrenia was my second chance at life in a very, very weird way.”
“Paranoia can be a deep, dark road, especially if you’re not aware of it. ”
“I'm very happy with where I'm at. It's enough, where I can recognize that I have an illness and that I am hallucinating but not enough where my hallucinations run my life.”
**“The great part about reality is that it’s shared. I was not sharing with other people.”
" I will continue to listen to your podcast to understand the struggle my family goes through. In bits in pieces, of course, because too much of that at once could be an overload."**
What helps Ryan: Advice to others with schizophrenia:
- Take your meds (when dosage reduced, hallucinations increase)
- Don’t smoke weed.
- Practice mindfulness. - be aware of your “voices” and get out of your head.
- “You’re a genius. And I mean that people are always going to treat you like you're different, and you are. It takes an incredibly strong person to go through what you're going through. And it's not going to be easy, but God put that on you, for a reason and you're strong you're intelligent. One day you'll have the strength to confront your paranoia. Until then rely on your family, rely on your friends, rely on the people around you. It's okay to not be okay, but it's okay to be okay, too, and one day you'll be okay, I promise.”
Who Are the 3 Moms?
Want us to cover a topic? Ask us a question? Facebook page @Schizophrenia3Moms
Randye Kaye -Broadcaster, Actress, Voice Talent, Speaker, and Author (“Ben Behind his Voices”)
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“)
“Housing…employment…daytime structure. There needs to be something for people in between all those medical appointments in order to really have a positive meaningful life.” - Guest Mary Guerrera, Exec. director
After hospitalization - what? Many people with mental health issues, and their families, struggle to find answers to that question.
What would true support and community look like? What is possible?
Fellowship Place in New Haven, CT has the following mission statement:
Mission Statement
To serve adults living with mental illness by offering a full range of therapeutic support and rehabilitation services that promote independence, wellness, and a meaningful life.
**Our guest today is Mary Guerrara, Executive Director of Fellowship Place.
Terms to know:**
HUD = Housing and Urban Development
NAMI = National Alliance on Mental Illness
NIMBY = “not in my back yard”
We ask:
- What is Fellowship place? Mission and how you make it work .What is it like there?
- Your personal story - why do you do this work?
- How is it funded?
- How can someone get a placement?
- What are the challenges?
- How can families help? - ADVOCACY. Fight for research. etc.
Quotes: from Mary
“You can’t take no for an answer”
“The most significant thing that I have found in my career is how you can't just rely on the government, you can't just rely on professionals, you really need a partnership.”
“Families can advocate for more funding to be able to develop projects that combine all of these elements: affordability, support services, and a peer support network.”
“There needs to be something for people in between all those medical appointments in order to really have a positive meaningful life.”
Links:
https://fellowshipplace.org/
Pathways:
https://pways.org/
Who Are the 3 Moms?
Want us to cover a topic? Ask us a question? Facebook page @Schizophrenia3Moms
Randye Kaye -Broadcaster, Actress, Voice Talent, Speaker, and Author (“Ben Behind his Voices”)
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“)
What if: the mental health system would pay more attention, take more steps to help , before tragedy, violence, or crime finally calls attention to symptoms of SMI (serious mental illness)?
What if Darrell Brooks (charged with murder after plowing his mother’s car into a parade in Wisconsin) had been helped, and treated, instead of ignored or imprisoned? His mother, Dawn Woods, wrote a letter to the media. She, too, is a “mom in the trenches”. So is journalist/advocate/mindfulness coach Jerri Clark, our guest for this episode.
What if Jerri’s son Calvin had received treatment, despite his “civil right ”to refuse it - although the refusal itself is a symptom of his illness?
She says:
“I watched my son delivered into society’s underbelly by design. He spent months homeless, met law enforcement again and again, and tried multiple times to die. These traumas are part of a tragic inventory of the requirements for public assistance when someone has a serious mental illness”
Her son Calvin was 23 when he died from suicide March 18, 2019.
She is the founder of MOMI–Mothers of the Mentally Ill, and talks with us about her family story, and her path to purpose and redefining her life - and Calvin’s life.
Links:
Pete earley’s post:
http://www.peteearley.com/2019/01/14/a-poignant-pbs-segment-jerri-clark-describes-her-familys-struggle-to-get-help-for-son-with-his-mental-illness/
PBS link: (Brief But Spectacular segment on PBS news hour)
https://www.youtube.com/watch?v=1ozj7TvpDHI
Jerri’s Story:
https://kansasalumnimagazine.org/my-sons-story/
Who Are the 3 Moms?
Want us to cover a topic? Ask us a question? Facebook page @Schizophrenia3Moms
Randye Kaye -Broadcaster, Actress, Voice Talent, Speaker, and Author (“Ben Behind his Voices”)
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“)
Lack of involuntary treatment, hospital bed shortages, anosognosia, criminalization of mental illness, public service costs…
Where do we turn when we need to change the system of mental illness treatment? How to break open the barriers? How do we advocate for change?
The Treatment Advocacy Center is a national 501(c)3 nonprofit organization 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. The Stanley Medical Research Institute is a fully integrated supporting organization to the Treatment Advocacy Center.
Ex. Dir. Lisa Dailey , Treatment Advocacy Center -
Lisa Dailey is the executive director of the Treatment Advocacy Center, leading an energetic team to improve state and federal civil commitment laws and promote evidence-based policies to positively affect those with severe mental illness. Lisa joined the Treatment Advocacy Center in 2015, bringing many years of nonprofit policy and advocacy experience. Her prior work includes the representation of refugees seeking asylum in the United States and many years of experience as a litigator in the areas of human rights and civil liberties.
- Lisa’s personal story about why she advocates for people with serious mental illness
- What are the main issues facing those with serious mental illness and their families? -
- Why was the Treatment Advocacy Center (TAC) started? How has it evolved?
- An inside glimpse of Dr. E. Fuller Torrey, TAC’s founder, author ofSurviving Schizophrenia
- What has TAC had the most success with? (Thank you for your advocacy to ensure people like our sons could get COVID vaccines.) What has been hardest?
- Tell us about TAC’s Grading the States. We’re from Connecticut, Minnesota and Washington.
- What is TAC’s relationship with NAMI?
- Recently hired a parent advocate, Kathy Day. What will she be doing that is new to TAC?
Links:
Twitter: @lisadaileyTAC
Sign up for Research Weekly, new legislative Advocacy newsletter, more
https://www.treatmentadvocacycenter.org/
Who Are the 3 Moms?
Want us to cover a topic? Ask us a question? Facebook page @Schizophrenia3Moms
Randye Kaye -Broadcaster, Actress, Voice Talent, Speaker, and Author (“Ben Behind his Voices”)
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“)
**Guest Joel Corcoran, Executive Director of Clubhouse International
WE are registered on Podchaser:** 1JYHu8EZSiGN2dxr1Oz7
Clubhouse International:
A Clubhouse is an evidence-based-practice founded on the belief that even the most disabled can sufficiently recover and improve their lives with the help of a supportive community. The Clubhouse model provides pathways to meaningful social inclusion, work and wellbeing. First developed in New York in 1948 by a small group of former psychiatric hospital patients, the model has gained international recognition, scaling to more than 350 Clubhouses operating in 32 countries and growing.
“We help start and grow Clubhouses globally where people with mental illness can go to get their lives back.
There simply are not enough resources today for everyone with a mental illness who needs help. It’s a crisis situation and the numbers are growing.
Clubhouses powerfully demonstrate that people with mental illness can and do lead productive, happy lives. Each Clubhouse we open reaches +/- 500
- How does the Clubhouse program fit into the larger mental health system?
- Sometimes the Clubhouse program is referred to as a peer led program. Is that accurate?
- What kind of things does a Clubhouse do for someone living with mental illness?
- What can a person joining a Clubhouse for the first time expect?
- Who is eligible for Clubhouse membership and what is expected of those who belong?
- What is the long term vision of Clubhouse International?
- How do Clubhouses get started?
Links:
https://clubhouse-intl.org/
Who Are the 3 Moms?
Randye Kaye -Broadcaster, Actress, Voice Talent, Speaker, and Author (“Ben Behind his Voices”)
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“)
Getting personal on this episode about the effects of addiction (drugs or alcohol) on the family - and the double challenge when it co-occurs with SMI (Serios Mental Illness) - in our sons’ cases: schizophrenia.
Are we ever really out of the woods? Are our loved ones?
What can we do? What must we let go of?
The 3 moms get personal here. Solutions? We wish we had some - but we do share ideas of actions and attitude.
Maybe you’ll hear your story inside of ours. You are not alone.
-----------
What is dual diagnosis? (Co-occuring disorder)
What works? What doesn’t? -
- “Harm reduction” treatment?
- 12-step programs?
Why is it so hard?
- Similar symptoms - delayed SMI diagnosisGrief
- Grief, Lost Trust, lost time
- Relapse disappointment
- Stronger drugs now
What can the family do?
- “Trust, but verify” - blood tests, Urine tests
- Set your boundaries/rewards/consequences
- Do what works - even if your break the rules you thought you knew
- Balance of letting go/stepping in
- Support a healthier community and purposeful activity for our loved ones
- Get support or help for yourself (the family) - AlAnon? Therapy?
- “Know that you’re dealing with something unknowable, and do the best you can” (Mimi)
- Look for Integrated Care for your loved one - treats both diagnoses together
- Keep watching carefully
- Be aware (and providers be aware) that what looks like “just substance abuse” may indeed be early symptoms of SMI - alert the family
Links:
Dr. Laitman - listen to our episode 18, June 2021
Samhsa has resources: 1-800-662-HELP
https://www.samhsa.gov/families
NAMI:
www.nami.org
https://nami.org/About-Mental-Illness/Common-with-Mental-Illness/Substance-Use-Disorders
Cedar Ridge: https://www.meridianprograms.com/program/cedar-ridge-mens-residential-stillwater-mn/
NAMI Family-to-Family
https://nami.org/Support-Education/Mental-Health-Education/NAMI-Family-to-Family
Book: Beautiful Boy
https://www.amazon.com/Beautiful-Boy-Fathers-Journey-Addiction/dp/0547203888
Who Are the 3 Moms?
Randye Kaye -Broadcaster, Actress, Voice Talent, Speaker, and Author (“Ben Behind his Voices”)
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“)
Guest: Katie Sanford , blogger, "Not Like the Others"
“You raise expectations, and raised expectations are what people need.” - Mindy
From Katie's blog:
"Throughout the course of my life with schizoaffective disorder, I have always been considered high functioning. But high functioning doesn’t mean my life is normal or even symptom-free. "
Katie Sanford is a blogger and advocate living with schizoaffective disorder who uses her insights and experiences to promote a deeper understanding of schizophrenia-spectrum disorders. She details her experiences on her blog, Not Like The Others, and is also an ambassador for NAMI Chicago involved with Crisis Intervention Training. She has been a guest speaker for college classes, webinars, and podcasts, and her story has been featured on platforms like Women's Health Online.
Questions:
Tell us Your Story!
How does schizoaffective disorder impact you at work?
How does it impact your relationships?
Is an outcome like yours possible for everyone?
And why do you think it's important for people to hear from individuals with lived experience?
What role has family played for you in your recovery? - support, treatment, early diagnosis
Advice for practitioners? - Believe your patients more
From article she wrote for The Mighty:
“Receiving a mental health diagnosis isn’t the end of your life, it’s just the beginning of a new chapter. But it may be daunting or terrifying. When I was diagnosed with schizoaffective disorder, I had no idea what my future would look like...While my mind went spinning into denial, fear and acceptance that life as I knew it was over, a part of me clung to hope and refused to give up.
Hope wasn’t enough to solve all my problems.”
Links:
https://katiesanford.net/wp/
https://themighty.com/
Who Are the 3 Moms?
Randye Kaye -Broadcaster, Actress, Voice Talent, Speaker, and Author (“Ben Behind his Voices”)
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“)
If you care for someone with a diagnosed serious mental illness (SMI) , you know that it isn’t easy to help them begin, or continue, treatment.
You hear “I’m not sick! I don’t need help!”
That phrase inspired our guest to find a way, write a book, and create a movement.
Dr. Xavier Amador is a world-renowned clinical psychologist & forensic expert, and a Family caregiver of relatives with schizophrenia and bipolar. He founded NAMI’s Scientific Council, helped to launch Family-to-Family, Peer-to-Peer & In Our Own Voices, and wrote the book I AM NOT SICK I Don’t Need Help!
We talk about:
- Dr. Amador’s family story: his brother Henry, and his son, with Schizophrenia
- What do we do when our loved one says I am not sick, I don't need help?
- Listening: without judgment, and with respect.
- Anosognosia, and how to approach someone who has it
- The Henry Amador Center on Anosognosia
- The power of your relationship
- Changes - and changes needed - in the mental health system
- Takeaways from the input from families and also people with mental illness?
- Diffusing Anger
- 3 A’s: Apologize, Acknowledge, Agree (to disagree)
- Crisis Communication v. long-term communication
- The LEAP method (listen, Empathise, Agree, Partner) and how families - and law enforcement - can be trained
- Role-play: Addressing Covid Vaccine reluctance with relative with SMI
- LAI (long-acting injectables) vs. pills every day
Quotes:
“You’re not going to make a delusion worse by listening to it and letting your loved one know that you’ve heard him and that you understand his anger, you understand his fear.” - Dr. Amador
My brother never believed he was mentally ill...but he stayed in treatment for the rest of his life” - Dr. Amador
Links:
Henry Amador Center on Anosognosia: https://hacenter.org/home
Book: I Am Not Sick! I Don’t Need Help: 20th Anniversary Edition: https://www.amazon.com/gp/product/0985206705/ref=dbs_a_def_rwt_hsch_vapi_taft_p1_i0
Who Are the 3 Moms?
Randye Kaye -Broadcaster, Actress, Voice Talent, Speaker, and Author (“Ben Behind his Voices”)
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“)
“Collaborative partnerships between law enforcement, mental health service providers, advocates, family members, and people with lived experience.” - Amy Watson
Sound good? That’s the foundation of the CIT Model.
“I could treat people like human beings” - Amy Watson
Police Activity is very much in the news these days, and response to mental health crises is often left in their hands.
Each of us has had experience with first responders, some trained in crisis intervention and some not. CIT Training is at least part of why our sons are alive (and not incarcerated) today.
**Our guest today is Amy Watson, President of CIT (Crisis Intervention Team) International, a leader in promoting safe and humane responses to those experiencing a mental health crisis. She is also a professor at Helen Bader School of Social Welfare at University of Wisconsin-Milwaukee.
CIT Basic Goals:**
- Improve Officer and Consumer Safety
- Redirect Individuals with Mental Illness from the Judicial System to the Health Care System
We Talk About:
- What is the CIT(Crisis Intervention Team) program model? - and why do you personally do this work? -
- What does the research tell us about CIT?
- What is CIT Training - what are the goals? Why the need?
- What’s the cost? Who pays?
- What’s the cost of NOT getting the training?
- What do officers say who have had the training? Do they get pushback from other police officers?
- How can a family member advocate for getting CIT training locally?
Links:
https://www.citinternational.org/
What is CIT?
https://vimeo.com/533695447
HBO Documentary “Ernie and Joe” - https://www.hbo.com/documentaries/ernie-and-joe
To end our first season with episode 25, we present the interview that started it all: Mimi and Randye interview Bob Kolker, and are joined by fellow activist/mom Laura Pogliano.
A conversation about #Schizophrenia and the Family: Is There Hope Beyond #HiddenValleyRoad? with Robert Kolker, Miriam Feldman, Randye Kaye, and Laura Pogliano.
Kolker is a journalist and nonfiction author whose first book Lost Girls was a New York Times best-seller and was recently adapted for a Netflix film. This book is Hidden Valley Road, an Oprah's Book Club selection and an instant #1 New YorkTimes best-seller about one family's struggle with mental illness.
Randye Kaye is author of Ben Behind His Voices, and creator of The Power of Kinship programs. She is also a noted voice talent, speaker and actor.
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 will be out on July 21st.
Laura Pogliano has been featured frequently in USA Today as mother & advocate for her late son Zaccaria. She is now the Maryland State Chapter Lead for SARDAA and focuses on family support and the reclassification of schizophrenia to Neurology. She is also on the Board of SARDAA.
What, if anything, has changed for families dealing with schizophrenia - and what has to happen next to improve the current situation?
We touch on:
Early Detection and Treatment
Need to fund and advance research and find a CURE
Four Pillars of Recovery
Stigma - is reducing stigma enough? (no!)
Schizophrenia as a brain condition, not a psychological issue
the sibling experience
Hidden Valley Road and the Galvin family
current disabled mental health system
need for education, NAMI Family-to-Family
...and more.
SHOW LESS
“Mom, the voices are telling me I need to kill you right now.” -
What can a parent do after hearing that from a child?
How can we educate mental health providers so they really “get” what it’s like to have a serious mental illness, or to be a family member of a loved one who has one?
Ever wonder what you can do to make the mental system better for others, even if you can’t help your own family member as much as you wish you could?
This episode is about those steps, to help make changes and fix what is so broken about the system.
Welcome Leslie Carpenter: Mom. and….
Experienced Serious Brain Disorders Advocate working to fix the broken treatment system locally, in Iowa and nationally. Effective speaker for advocacy. Recently retired early from a rewarding 34 year career in physical therapy and management, to have more time and energy to focus on improving the quality of treatment for 11.9 million people with serious brain disorders in our country.
Keep spreading the word. Also join our facebook page @schizophrenia3moms
- Leslie’s family story with schizoaffective disorder
- Political Advocacy in Iowa - Meeting with Presidential Candidates and more
- NAMI Provider Training - how it works, and expanding it nationally
- solutions to fixing the broken, siloed treatment system for people living with serious brain illnesses
- anti-stigma campaigns
- The dream of creating psychiatric assisted living campuses - long-term housing solutions
- “Ripples Of Hope” advocacy talks
LINKS:
Advocacy talk to the City of Iowa City via Zoom this past spring, after she and her husband received an award from the Iowa City Human Rights Commission:
https://www.youtube.com/watch?v=b0aO1TbwED0
NAMI Provider Ed:
https://www.nami.org/Support-Education/Mental-Health-Education/NAMI-Provider
Lwentworth@nami.org
NAMI Iowa video on Provider Ed:
https://namiiowa.org/provider/
Pete Earley:
http://www.peteearley.com/
Crazy: A Father's Search Through America's Mental Health Madness
DJ Jaffe obituary:
https://www.nytimes.com/2020/09/16/nyregion/dj-jaffe-dead.html
His book, Insane Consequences
Fellowship Place: New Haven CT
https://fellowshipplace.org/
International Clubhouse
https://clubhouse-intl.org/resources/quality-standards/
Are you dealing with SZ in a loved one? Feeling confused? Scared? Angry? Overwhelmed?
You are not alone. We've been there...and how.
There are stages in the emotional journeys of families dealing with Schizophrenia in a loved one. Mimi, Mindy and Randye are now often at the "advocacy/Acceptance" stage - but not always.
In excerpts from our books, and quotes from listeners, we talk about the events and feelings in the earlier stages of the journey.
From Crisis, to Coping, and Advocacy...and the carousel keeps spinning.
And yes there is hope too.
Who Are the 3 Moms?
Randye Kaye -Broadcaster, Actress, Voice Talent, Speaker, and Author (“Ben Behind his Voices”)
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“)
Episode 22- From Schizophrenia and Pot Addiction, through Treatment, to Success: Carson's Story
Today we talk with Carson S. , who has an inspiring story to tell, from schizophrenia/addiction to sobriety/recovery success. We talk about his life….what it used to be like, what his challenges have been (addiction/intrusive thoughts/SMI) , and how he is doing now…..and what advice he might give to others who need to have hope.
Mimi and I met Carson last week at a gathering at Rob Laitman’s home for his patients and families (see episode 18)
- What happened when you were using marijuana?
- Did you realize that was an abnormal response?
- As your symptoms progressed, what did you think was happening? Did you even suspect mental illness?
- Did your parents or family know what was going on? What about teachers or friends? Did they suspect anything?
- When was it that you finally realized you had a problem?
- Did you ever “hear voices”? If you did, could you tell they weren’t real?
- What other symptoms did you recognize?
- Were you afraid of the medication? Afraid of the doctors?
- Since we know you finally ended up on clozapine, you must have had a rough journey on previous medications? Tell us about that.
- How was clozapine different?
- When did you notice improvement? Were there specific things that changed or were different?
- You spent a year at Viewpoint Dual Recovery Center - what was that like?
- Have you had any challenges with wanting to use marijuana?
- What’s your life like today?
- It is very difficult to recover from the dual diagnosis of BOTH addiction and serious mental illness.
- But as of today you seem to be managing this. How did you do it?
- What do you want other families to know?
Who Are the 3 Moms?
Randye Kaye -Broadcaster, Actress, Voice Talent, Speaker, and Author (“Ben Behind his Voices”)
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“)
Today is about solutions -( we’ve done a lot of episodes about problems) - and at the end we’ll share some free resources to help you if someone in your family has schizophrenia -
Guest: Michael Mackniak, JD
Free resources:https://myfenow.com/3moms/
https://myfenow.com/tools-of-hope/
Other Links:
https://vip.myfenow.com/
https://michaelmackniak.com/
http://guardian-ct.org/
https://www.facebook.com/groups/FamilyEmpowermentNOW/
Mike’s book : Saving Melissa
Michael Mackniak specializes in coaching families and fiduciaries, to help them with the ability to get the comprehensive services for their loved ones, friends or clients.
He wrote "Saving Melissa: The Seven 7C's for Curing the Mental Health System" . It has insight and strategies into the process of creating an interrelated service system in their community.
He also leads Guardian Ad Litem Services, better known as Melissa’s Project, which is a copyrighted program based on Care Coordination.
We Talk About:
What are the 7 c’s, and the obstacles you face when trying to implement them ?
(Core Concepts you have found to be most successful in providing effective and efficient services in mental health treatment?)
- Client Centered,
- Communicative,
- Collaborative,
- Consistent,
- Comprehensive,
- Committed,
- Coordinated
What are some of the common issues that you face when implementing your program
People don’t want to be leaders
HIPAA myths and misconceptions
Reluctance to change (systemically)
Institutional memory
“Who do you think you are?”
Why is Family Empowerment so important? Are there Core concepts there, too? And challenges?
Getting Tools of Hope - and More Resources
QUOTES:
“I really hate seeing broken systems...and there is nothing more inefficient than our mental health systems.” - Michael
“I firmly believe the systems cannot change and will not work without the assistance of the families. Without family help the rate of success is vastly diminished.” - Michael
“The mental illness that you’re going through cannot define your family, and it cannot define you and who you are as a person.” - Michael
Who Are the 3 Moms?
Randye Kaye -Broadcaster, Actress, Voice Talent, Speaker, and Author (“Ben Behind his Voices”)
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
Catch-up chat: re future episodes; people who call us “overbearing moms” and blame the family; patients’ “rights” vs. family caring;
Themes: What does entertainment media get wrong?
- Lack of named diagnosis - UnReal, Girl Interrupted
- Inaccurate/unresearched portrayal of SZ - Words on Bathroom Walls
- Madness Always Linked to Genius - The Soloist, Beautiful Mind, Shine, Proof
- Mistrusting Medication and Treatment - Beautiful Mind
- Lack of Diversity - often male/white - no cultural differences in attitudes/traditions represented
- Tendency Toward Violence - even serial killers - The Fisher King, Donnie Darko, The Joker
- Hallucinations as mainly visual/romanticized - Beautiful Mind, Words on Bathroom Walls
- Long/Lifetime Hospital stays - Love Actually
- Blaming Family Dynamics/ Bad childhood as only “cause”
- Treatable with Therapy alone - meds are bad - One Flew Over Cuckoo’s Nest
- Romantic Love/ A Good Job can “cure” you - Words on Bathroom Walls
- SZ Films “based on a true story” whitewashed for entertainment value -
- Those with SZ are “possessed” by supernatural
- Too Much Hope? Recovery? - Benny & Joon
Some things they get right:
- Employment can be an important element of recovery - The Joker
- Medication as often vital part of Treatment - The Joker, Silver Linings Playbook
- The mental health system needs so much work - I Know This Much is True, The Joker
-
Family Emotional Reactions/Burdens - Silver Lining Playbook, I Know This Much Is True,
-
Other movies mentioned: The Snake Pit
Links:
https://thecinemaholic.com/schizophrenia-movies/
Next week’s guest:
Michael Mackniak, JD , Guardian Ad-Litem Services, Melissa’s Project
Helping Families Control the Chaos of Mental Illness at Home and at Work.
In this episode, we talk with our own daughters about the lived experience of the sibling when schizophrenia hits the family. The emotional toll on this group of family members is often swept aside in the wake of the crises involved in SMI. We give them a chance to speak.
Guests: Our Daughters - Angela, Lucy and Ali
PAST:
- What was it like for you growing up, as your sibling’s illness began?
- When did you start suspecting something was wrong?
- Did you second guess any things your parents were doing for him?
- Did you resent your brother for needing your parent(s) so much? Did you resent your parent(s)? And how did you work through that? (Kathy Day asked)
PRESENT:
- What is hardest for you about your brother's illness?
- How do your friends feel about him? How do they best support you?
- Has your life changed in any positive ways because of your brother?
- Do you see yourself as a mental health advocate? If so, how?
- What is it like now? Where are you on the “graph of emotions?
- Do you feel cheated that your mom spends more time with sick sibling? (Cindy Grossman asked - fb)
- Do you fear that you could also become schizophrenic at any given time? Or your kids? (Kathy Burchett, fb)
- Do you feel guilty that he got sick instead of you?? (Laura Pogliano)
FUTURE:
1. What are your major worries about when we parents aren't around to be front-line advocates for your brother?
2. What do you see yourself being able to do and what will you need help with?
3. What help do you hope will be in place?
Final question: What do you most want other relative groups - particularly parents - to know about your experience as a sibling of someone with SZ? How can we best be of help to you?
Links for mentions:
NAMI Family-to-Family
In this episode, we talk meds with an MD. Specifically: Clozapine. Many of us are told that it’s the “last resort” medication, “when nothing else works”. Is that really true?
Guest : Robert S Laitman, MD, is an internal medicine physician at Bronx Westchester Medical Group in New York. Over the last 10 years, he has developed a practice taking care of people with psychotic disorders after his son, Daniel, received a diagnosis of schizophrenia in 2006.
Dr Laitman, his family, and his colleague authored the book, "Clozapine: Meaningful Recovery from Schizophrenia."
We talk about:
1. Why do you say clozapine should be the drug used first? Why isn’t it?
2. Why is clozapine used more in other countries compared to the United States? Why isn’t it marketed more here?
3. Why does clozapine take so long to fully kick in (a year in some cases) compared to other antipsychotics? Your son continues to improve, even after being on it for 9 years. In what ways does he improve?
4. How does clozapine can benefit patients, besides addressing the classic symptoms of schizophrenia, e.g., suicidality, illicit drug use, smoking.
5. Mitigating predictable side effects - e.g., weight gain, salivation, sedation. (Med therapy management and how it works)
6. We need Engagement, Access, Treatment, Support
7. What can families do, to advocate for their loved ones to get best treatment? What should practitioners know, and do? What can families do? Educate yourself about clozapine and talk with your loved one’s psychiatrist.
Links and explanations:
TeamDanielRunningForRecovery.org
Clozapine facebook page
Team Daniel facebook page
SZ 3 Moms Facebook page
Get on the mailing list:
rslaitman@aol.com
Dr. Laitman’s Book:
https://www.amazon.com/MEANINGFUL-RECOVERY-Schizophrenia-Serious-Clozapine/dp/172748424X
New finger-prick Point-of-service test
Psychiatrists were once referred to as Alienists - Psych. Today article
Deborah Levy was director of the Psychology Research Laboratory at McLean Hospital and an associate professor of psychology in the Department of Psychiatry at Harvard Medical School,
A “Just Us 3 Moms, Digging Deeper” Episode.
Tonight we just talk about our boys - and what we’ve lost, what they have lost.
Feeling even more alone than ever? Not only is your family member diagnosed with schizophrenia, but you have your own reactions and emotions to deal with - what is “normal”? What do other families feel? What are the stages of these reactions? What can be done?
We Three Moms have been there...are there...and we open up to share the raw truth with you. This podcast strives to explore issues, open minds, offer solutions...but we also promise to tell our truths. This is one of those episodes.
We touch on:
Anger, Grief, Helplessness, Fear, Guilt Resentment, Exhaustion - all normal feelings
What Siblings Lose
Family events - Changes in Routine (like travel) - possible with schizophrenia?
Grief - and how the process can differ (and repeat) with Schizophrenia in a loved one
The land of “What might have been…” sorrow - what have we lost?
The Burden Families Feel
When the Life Behind the eyes is gone
Bravery of our sons - They Try so Hard
Parental Fantasies, Expectations - and the Truth
Vulnerability of Loving
Getting Back to Joy in Real Life: Gratitude, Art, Advocacy, Feel but Don’t Wallow, Reality
Quotes:
“I see this damage to all my children - and that’s the thing I think that’s most painful” - Mimi
“There’s no life behind his eyes. What happened?” - Randye’s daughter
“You can’t reason with mental illness.” - NAMI saying
“What makes schizophrenia especially cruel is: it’s just such a shock” - Mindy
“In a sense, you have to let go of the idea of a future, and that is a particularly excruciating thing to have to do” - Mimi
“If you’re lost in crisis...get support, get education...reach out...don’t hide in the closet. You’re not alone.” - Randye
Links:
Randye and Ali on More than My Diagnosis.com
https://www.otsukapatiented.com/mental-health/community-stories
Miriam Feldman Facebook “analogue Life”
https://www.facebook.com/miriamfeldmanwriter/
Miriam and Nick on ABC News:
https://abcnews.go.com/US/mom-struggled-accept-sons-schizophrenia-talks-crisis-services/story?id=77349357
Mindy’s Talk for Mental Health Association of San Mateo County:
https://www.youtube.com/watch?v=y3WrpHWFlF0
Randye’s talk for Mental Health Association of San Mateo County:
https://www.youtube.com/watch?v=qFirkQBdQZk
Who are the 3 moms?
Randye Kaye -Broadcaster, Actress, Voice Talent, Speaker, and Author (“Ben Behind his Voices”)
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“)
Sometimes the best parts of the conversation happen after we press "stop" - so today we captured what happened after that. Guest is Eric Smith, a nationally recognized mental health advocate, public speaker, and consultant on matters of severe mental illness (SMI). He is also a graduate of assisted outpatient treatment (AOT).
AfterWords:
Why does Eric advocate for AOT?
What about AOT for someone who isn’t as “stellar” as Eric?
What’s a real human right? To make your own decision to refuse treatment while your brain is ill, or to receive “ordered” treatment when you’re not yet aware that you need it?
Treatment, Structure. Purpose, Love - 4 elements of success.
“The least amount of harm and the most amount of good”
When families refuse to be the caretakers -what team can take over if we fight for it?
The pitfalls of the child-parent dynamic
From Serious mental Illness to Thriving in reality
Guest : Eric Smith is a nationally recognized mental health advocate, public speaker, and consultant on matters of severe mental illness (SMI). He is also a graduate of assisted outpatient treatment (AOT). His story has been told in the documentary Stopping the Revolving Door – A Civil Approach to Treating Severe Mental Illness. He has been written about inBedlam, authored by Peabody Award-winning Kenneth Paul Rosenberg, MD.
Court-Ordered Treatment for Serious Mental Illness saves lives and families. Eric Smith tells his story, and why he advocates for AOT (Assisted Outpatient Treatment)
- Update: Mimi and Nick on ABC news
- Issue: Miriam Delphin-Rittmon, Biden's nominee for Asst Secretary for Mental Health and Substance Abuse from Connecticut, is not an advocate for AOT. Connecticut is one of three states without AOT.
- Story: A big step - to admit to “wrestling with symptoms”
And, with our guest,
- What is AOT (Assisted Outpatient Treatmen) and how can it help with SMI (Serious Mental Illness)?
We ask Eric :
- Please tell us a bit about your story and how AOT played into it.
- As mothers, we're happy to see that your parents have participated with you to help educate professionals. If they were here today, what would they say in support of AOT?
- Did you appreciate their role in you receiving AOT care at the time? If not, how did you heal over time?
- Which people benefit from AOT and why do you include yourself in that group?
- Please describe what AOT services you received? What helped you the most?
- Where do you believe you'd be now if you hadn't benefited from it?
- Do you see any future hope that patient's rights groups will come to see AOT as targeted to just the very severely ill people and that it helps them? Have you received blow back from them?
Quotes:
“I was difficult, I was rude...I was basically “fired” (as a patient) for all the things I needed treatment for.” - Eric
“The AOT Team recognized that I was being held hostage by my own mind. And they freed me from all of that through a combined effort: psychiatry, social work, a nurse, even an attorney - and a civil court order. ” - Eric Smith
“The most involuntary and coercive and forceful thing I have ever experienced is: my own untreated, undertreated mind”. - Eric
“Fifteen years of failed medication trial and error. Fifteen years of my parents trying to get me the help I needed. Everything had failed.,,AOT is a lifeline, a miracle.” - Eric
“I was too sick to engage in voluntary care, and that’s why I’m advocating for something in addition to what you’re advocating for. You’re right...but I’m also right.” - Eric”
Have you ever wished there were a way to learn about your loved one’s mental illness, so that you can stop grasping at straws, making things worse, being always in the dark about what to do and how to cope?
This DOES exist - and it’s free. It’s called Family-to-Family, offered by NAMI (The National Alliance on Mental Illness) - and they have tons of other resources as well.
https://www.nami.org/Support-Education/Mental-Health-Education/NAMI-Family-to-Family
This FREE course is offered by the National Alliance on Mental Illness (NAMI) called Family-to-Family. Randye has also taught it countless times, and is one of the state trainers for Connecticut. Mimi and Mindy were forever changed (in a good way) by taking it.
Our guest: Suzanne Robinson, Director, National Education Programs, NAMI - will tell us all about it.
We talk about:
What is NAMI? National Alliance on Mental Illness - how does it help people, families and professionals dealing with mental illness?
Our stories: some increase in awareness of symptoms? Maybe.
Randye’s son Ben: “When I’m not on my meds, I wrestle with symptoms” - First time ever saying that - did he mean it?
Mimi and her son Nick (!) on ABC news talking about his schizophrenia.
Suzanne’s story as a sibling and child of someone with mental illness. We aren’t all parents.
What makes NAMI programs different? - Peer education approach (lived experience)
What is F2F? (Family-to-Family)? How did it begin? What is covered? How many have been helped?
The rapport and support that happens and grows in the course of the 8 weeks.
What changed with the new version (6th edition) released in early 2020
Is it now available online? - COVID and pivot to programs offered online
What other resources does NAMI have for families and people experiencing mental health?
Quotes:
“The lightbulbs went off for me in Family-to-Family...that moment when I really learned ‘oh my god, it’s not my son’s fault’ was so powerful.” - Randye
“My golden nugget was to learn what (my son) Jim still could do. “ - Mindy
“Some people want to talk about how they feel...others are like: give me the information so I can take action. Teach me something so that I have the background, the understanding and the growing empathy.” - Suzanne
**Guest: Judge Lisa Wexler, Connecticut
Many of our listeners have shared frustrations with the law, confusion about the process, and want to know more. Today we get the story from the other side of the bench.**
This is Part Two of our conversation with Judge Lisa Wexler (https://www.lisawexler.com/). Judge Lisa has been a probate judge in Connecticut since 2013. She is a graduate of Johns Hopkins University and NYU School of Law. She has practiced law in NY and CT for many years and is also a professional mediator . Lisa is also the creator of The Lisa Wexler Show, a daily talk radio show airing on WICC-600 in suburban CT and metro NY.
We Talk About: Part Two:
CT one of three US states that doesn’t have Assisted Outpatient Treatment (AOT). Do you wish it did?
Need for “acute event” to be admitted to hospital. Can we intervene before it gets to that point?
Civil Commitment (Minnesota and some other states)
How hard is it to make decisions for those with Schizophrenia and their families? Do you ever wish for more power, or less?
How much does/should the average Judge know about mental illness before making decisions like these?
What state laws would you change if you could?
Issues of Dangerousness, Gun Control , Access
“Right of Notice” vs “Right to Appear” re hearings for families
Probable Cause hearings
CIT (Crisis Intervention Training) for Police
For the 3 moms: What would you most want judges to know?
Judge Lisa: What would you most want family members to know ?
**Guest: Judge Lisa Wexler, Connecticut
In past episodes we’ve had the chance to talk with social workers, psychiatrists and other practitioners about the “flaws” in the system to get help for people with schizophrenia - get them off the streets, into treatment, and stable.**
Many of our listeners have shared frustrations with the law, confusion about the process, and want to know more. Today we get the story from the other side of the bench.
Judge Lisa Wexler (https://www.lisawexler.com/)has been a probate judge in Connecticut since 2013. She is a graduate of Johns Hopkins University and NYU School of Law. She has practiced law in NY and CT for many years and is also a professional mediator . Lisa is also the creator of The Lisa Wexler Show, a daily talk radio show airing on WICC-600 in suburban CT and metro NY.
**We Talk About: Part One
Commitment laws in CT and the abilities of conservators.**
- Can medication for schizophrenia or other SMI (serious mental illness) be legally required? Enforced? In what circumstances/places? By whom (who has the authority)?
- Hospitalization/ Involuntary commitment in mental illness
- Hearings re disability, etc.
- What’s it like on your side of the bench? What goes into the judgments you make regarding mental illness and conservatorship? What do you look for when you meet someone who may need to be conserved?
- Who make the best conservators? Family members or professional conservators?
- What is the “black robe effect?” Does it work?
Much more to come in Part Two, episode 13
Marijuana - it’s being legalized for medical and recreational use more and more, on a state-by-state basis. But for people diagnosed with schizophrenia, there are concerns.
- Does it “cause” or trigger schizophrenia ? Or is it’s use just a result/symptom of the illness as it helps some with the brain confusion?
Well, the jury is still out on that question...but, we have a spirited discussion and more with our Guest: Dr. George Realmuto, Child Psychiatrist (University of Minnesota, emeritus).
We also ask:
- Some who use after diagnosis say it helps with symptoms, and they need fewer meds. Others say it makes things worse. Any studies?
- .legalization.... good or bad? For potential addicts, for those of us with SZ in our families? Decriminalization issues. Should prevention be included in bills?
1. From a scientific perspective, what happens to the developing brain when marijuana is used?
2. If a young person did not have the genetics that could later cause schizophrenia, could marijuana use still cause psychosis and later schizophrenia?
3 How are the stronger new strains of pot different from the old stuff?
4. What is the chemistry of THC that is so bad for people with schizophrenia.
5. For those who use marijuana and then develop schizophrenia, is their schizophrenia worse than if they had not used marijuana? Examples?
6. Since you are a child psychiatrist, what things can families and schools do to prevent young people from using drugs and later developing mental illness? What are early indicators that such prevention is needed?
7. Once a person is using drugs and has schizophrenia, what can best help them? Is there any progress in MICD (Mental Illness with Chemical Dependency) treatments?
8. What do you have to say about parents who are told they are "enabling?"
9. Does the media (movies, TV, etc) glamourize marijuana use and what should we teach our kids?
10. Where have we made the most progress so we can have some hope for the future?
Rebecca’s Story, Part 2
- What do the intrusive thoughts (aka to some, “voices”) say to you?
- Rebuilding your life, and giving to others - how does that help?
- Psychiatrists - the good, the bad, the changes, and why it matters
- Relationships - How were they affected?
- Whether to disclose your illness? When? How?
- The ups and downs of recovery. how do you know when you are starting to slip?
- We talk about 4 pillars of recovery - treatment, structure, purpose, and love/community. Are these important, and how do you get them?
- What has family support meant for you?
- Has Covid affected you?
- Constructive self-talk: What words help you? What’s next in your life?
- What message would you give to those with Schizophrenia, their families, and practitioners?
Quotes:
“So much of this is...not only are we dealing with this illness, but we have to keep up with 50 million pills, or it may cause weight gain, or tardive dyskinesia, and it’s so..frustrating.” -Rebecca
“When I take my meds, it’s not just for me. It’s for my family, my friends. Not just for me. That was a real big turning point.” -Rebecca
“The same types of thoughts haunt me when (the meds) start wearing off.” Rebecca
“Four pillars of recovery (treatment, structure, purpose, love/community): these are not ‘mental illness needs’ - these are human needs.” -Randye
“When you have a mental illness such as schizophrenia, there are a lot of secrets...or shame...it’s hard to understand, and I think we need to give each other grace.”
Rebecca Lyn Phillips -
Rebecca Lyn Phillips, 43, is a published author, speaker, and mental health advocate. She regularly shares her story of trial and recovery to help others who need hope. She wants to shine a light on a dark subject and show that life can happen again.
LINKS:
Mindy and her book: https://mindygreiling.com/
Randye and her book: https://benbehindhisvoices.com/
Miriam and her book: https://www.miriam-feldman.com/
Rebecca’s book, Heart to Heart:
https://www.amazon.com/gp/product/0840792190/ref=dbs_a_def_rwt_hsch_vapi_taft_p1_i0
“Living with Schizophrenia” Documentary:
https://youtu.be/48YJMOcykvc
LEAP Foundation (Dr. Xavier Amador):
LEAP® (Listen-Empathize-Agree-Partner) is an evidence-based approach that shows you how to quickly gain the trust of someone you are at odds with.
https://lfrp.org/home
Dr Harriet Lerner :
https://www.harrietlerner.com/
Rebecca Lyn Phillips
Rebecca Lyn Phillips, 43, is a published author, speaker, and mental health advocate. She regularly shares her story of trial and recovery to help others who need hope. She wants to shine a light on a dark subject and show that life can happen again.
Episode 9: Rebecca Lyn Phillips, Part One
3 Mom Updates:
- When SMI peer community can be a problem
- Having a “mundane” problem put in perspective
- Periods of calm
Rebecca’s story:
- early life - filled with love, or filled with trauma? (the answer: love)
- "Dark Days" how psychosis started for Rebecca, what it felt like " I was tormented by intrusive thoughts and beliefs that hurt me." -- what was that like?
- Spirituality and psychosis
- “Voices” or “intrusive thoughts”?
- First and subsequent hospitalizations and medications: what was that like?
- Why go off your meds if they seem to help?
- Did you tell friends and other family members about what you were going through?
- Lowest point, and turning point: when things turned around - what clicked? the right doctor? the right medication? Your own awareness? The right words at the right time?
LINKS:
Mindy and her book: https://mindygreiling.com/
Randye and her book: https://benbehindhisvoices.com/
Miriam and her book: https://www.miriam-feldman.com/
Rebecca’s book, Heart to Heart:
https://www.amazon.com/gp/product/0840792190/ref=dbs_a_def_rwt_hsch_vapi_taft_p1_i0
“Living with Schizophrenia” Documentary: https://youtu.be/48YJMOcykvc
Quotes:
“When I was 17, I started sleeping in my closet...it was like I was trying to escape my mind” - Rebecca
“When I was 18, I was sleeping in the bathroom in the art building because I thought I was in danger.” - Rebecca
“I was so scared that I’d have to be in a group home for the rest of my life...and I’d die there” - Rebecca
“The psychiatrist sat across from me and he said ‘I know your family member can accept your illness, but can you accept your illness?’...and something in my psyche shifted..and I thought ‘I actually have a choice here.’” - Rebecca
“I accept (and I don’t always do it with joy) -I accept that I have an illness. It’s a daily thing, and it’s taken years and years of struggle.” -Rebecca
“The voices - the thoughts - were saying to me ‘flush all your medication down the toilet’” - Rebecca
Personal story updates include: case management team change; possible medication change; need for employment, and support to get there. (first 5 minutes of podcast)
Then, a conversation with Amedeea Enache, Exec. Director of Estuar Foundation in Romania, Board Member of Mental Health Europe
We talk about:
- Deinstitutionalization, esp. After break from communism in 1989, then joining European Union in 2007 - where do patients go once discharged?
- Disparities between the urban and rural area in terms of services provided
- Stigma/secrecy - people diagnosed, and their families
- Employment for those with SMI -importance, availability
- Awareness in the field, who are the main actors, and what is the families and members involvement
- What our countries can learn from each other
Links: https://estuar.org/ (it’s in Romanian, though) - facewbook page: https://www.facebook.com/estuarclubhouse
Estuar Foundation was established in 1993 by Penumbra Association from Scotland and Romanian League of Mental Health and it is the first Romanian organization created for adults with mental health challenges. It's a network of day community care centers and accommodation services that were certified and recognized at local and national level.
They work with:
- Families and friends of people with mental
- health problems
- Community membres
- Adults with mental health problems
- Representatives of local and central authorities
- Adults with temporary problems of adjustment
- and communication
- Mental health specialists
About our guest:
A passionate professional, focused on achieving results, with eighteen years activity in serving communities and vulnerable groups. Ten years as director of social services provider NGO. Experience in organizational and project management, mental health services development, national and international partnerships development, human rights, and advocacy in mental health field.
EDUCATION in US (current) 2020-21
Humphrey School of Public Affairs, University of Minnesota
Humphrey International Fellow, Affiliated with Fulbright Program
Interview with Lynn Nanos, L.I.C.S.W.
If you’ve ever wondered why our loved ones aren’t getting the help they need, Lynn writes about her side of the process in the book Breakdown: A Clinician's Experience in a Broken System of Emergency Psychiatry.
Stories about her patients open our hearts, and she shares clear and valuable solutions to help fix the problems.
"They died with their rights on” - what’s wrong with that?
How do inpatient units discriminate against those who are most sick?
How can discrimination be curtailed or eliminated?
How common is it for you to evaluate people who are clearly sick enough to be in the hospital, but there aren’t enough markers to warrant hospitalization?
The law only cares about what is “imminent.” Why?
Psychiatric involuntary transfer and hold laws
The revolving door of cycling in and out of hospitals and jails.
AOT - Assisted Outpatient Treatment
Peer specialists - do they go too far?
The antipsychiatry movement - harmful or helpful?
IMD exclusion
HIPAA
In the news: Britney Spears and conservatorship
Brief Sons’ Recovery updates, “good and bad” - and The Miracle of Ordinary
What is Conservatorship? - varies from state to state
How we did - or didn’t - get to be our sons’ conservator/guardian
Mindy and Mimi - Managing without conservatorship
Randye and Ben’s 's Journey to Conservatorship - and Why
Releases of Information
Can you get right to involuntary commitment? Right to Medicate?
Renewing, and Annual Reports
Why the Relationship Matters
Guardianship and Civil Commitment - Minnesota
Protecting Loved Ones from Being Victims
Protecting Ourselves from Being Victims
Some Myths about Guardianship
A few workarounds we use
Quotes:
“My feeling about all this is: Get the Job Done.We need to take care of our kids.” -Mimi
“Conservatorship? I use it to protect him. I use it to be there if needed. I can save him from financial decisions he made and wasn’t equipped to make..” - Randye
“They burglarized our home for drug money. It was going from bad to worse. And all of his mental health workers said there’s nothing that we can do. He’s his own person.” - Mindy
“Society does recognize schizophrenia or any of its versions as vulnerable.” - Mindy
**Top Five changes we Need - and More
1 Reclassify SMI (Serious Mental Illness) as a physical/medical, not behavioral condition - we need to fund more research : and Why is there no cure for SZ?**
#2 - HIPAA (discussed in more detail in Episode 4)
#3 - Repeal the IMD Exclusion (would make more hospital beds available for SMI)
#4 - Full Continuum of Care
#5 - Decriminalize SMI
Also : Early signs? Early Detection.
A state level change that is helping families in MN
Interview with Dede Ranahan, author and editor (64 co-authors) of “Tomorrow Was Yesterday...Mothers Across the Nation Tell It Like It Is“ living with SMI (Serious Mental Illness) in our loved ones. Not just family stories, but about action. Advocacy. What we want to see happen to help families like ours.
- Author Talk: How we got our books from idea to publication
- How Dede found and collected 64+ stories of Serious Mental Illness in the family
- Getting change on a Federal level to help families- The White House Book Project
- Getting Down to Grass Roots - the 5-point plan for change
- HIPAA reform- #2 on the list, and why it matters so much
- Preview of Part 2 (Episode 5) - the rest of the Five-Point Plan, and what we can do
- What is schizophrenia? - definitions we use/hear - what it is not
- What do you think happens in your son’s head when symptomatic? What does it look like to you and your family? What do you observe?
- What changes when treatment is effective? What doesn’t change?
- Positive and Negative Symptoms of Schizophrenia
- How can we empathize?
- What effect do street drugs have on treatment?
Quotes:
“Schizophrenia is a serious mental disorder in which people interpret reality abnormally. Schizophrenia may result in some combination of hallucinations, delusions, and extremely disordered thinking and behavior that impairs daily functioning, and can be disabling. People with schizophrenia require lifelong treatment.” - MayoClinic
“The fact that he would have this constant loop of negative voices in his head, and I have no ability to fix it or help him...it’s devastating” - Mimi
“And I’ve heard him whisper, under his breath, ‘no, that’s just my mom’ which makes me think ‘what are the voices telling him about me?’”- Randye
“Sometimes he’ll do a reality check on the ‘voices.’ He’ll say ‘Mom, did you just say you don’t like me?’ And I assure him I would never say that” - Mindy
- Q: Describe one of your lowest points as schizophrenia progressed in your son - how did you survive?
- Q: Were there “wild goose chases” while trying to figure out what is happening?
- Q: Describe a moment of hope / accomplishment - what was working ?
- Getting Help: "SEARCH"
- Support - emotional, practical - how to feel less alone
- Education - Books, Classes
- Acceptance - how to get there, stay there?
- Resilience - building the skills
- Communication skills - what helps not make things worse?
- Hope/Humor
- Why this podcast? - a place to tell the truth about SZ in the family
- Our stories, sons, our books (and why we wrote them)
- Who were our sons ….before?
- Where are our sons today?
- What has been the hardest thing about this so far?
- PEOPLE ARE ASKING...What we wish we’d known earlier
- Each close with message:
- Mimi - Joy is still possible
- Mindy - advocate!
- Randye - It is what it is - savor every good moment but lower expectations
- How to get in touch with us
- Please share! And send questions you want us to talk real about
- Join us again for next Episode: Sharing what has helped us - tips through the trenches