Schizophrenia: Three Moms in the Trenches
Randye Kaye
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A Plan of Action for COD (co-occurring disorders): The Harris Project (Episode 53)
Schizophrenia: Three Moms in the Trenches
09/29/22 • 54 min
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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/
Want to know more?
Join our facebook page
Our websites:
Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman
1 Listener
Navigating Psychosis & Behavioral Health Systems: Against All Odds: Dr. Gary Tsai (ep. 52)
Schizophrenia: Three Moms in the Trenches
09/15/22 • 42 min
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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/
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.”
Want to know more?
Join our facebook page
Our websites:
Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman
1 Listener
Siblings: My Brother or Sister has Schizophrenia - What About Me?
Schizophrenia: Three Moms in the Trenches
06/09/21 • 58 min
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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:
Want to know more?
Join our facebook page
Our websites:
Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman
1 Listener
Cannabis and Mental Illness - Is Marijuana to Blame for Psychosis?-Ep. 97
Schizophrenia: Three Moms in the Trenches
07/02/24 • 60 min
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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:
SPAN:
SAM -
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#
Laura’s story in Newsweek:
https://www.newsweek.com/cannabis-triggered-son-ext
Brilliant Beaver Guidebook - Audio VersionEngage kids aged 6-9 with fun, screen-free activities from the world of scouting
Want to know more?
Join our facebook page
Our websites:
Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman
Ask the Moms: We Answer Listener Questions in Our First Live Episode!
Schizophrenia: Three Moms in the Trenches
03/18/22 • 65 min
Send a Text to the Moms - please include your contact info if you want a response. thanks!
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“)
Want to know more?
Join our facebook page
Our websites:
Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman
Money and Mental Illness: The Effect of Finances on Family Mental Health
Schizophrenia: Three Moms in the Trenches
02/23/22 • 49 min
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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 [email protected], 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”,
Want to know more?
Join our facebook page
Our websites:
Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman
Never Truly Out of the Woods - “Long-Haul” Schizophrenia and the Family (Ep. 51)
Schizophrenia: Three Moms in the Trenches
09/08/22 • 46 min
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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.”
Want to know more?
Join our facebook page
Our websites:
Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman
I Am Not Sick, I Don’t Need Help! How to Help Someone Accept Treatment
Schizophrenia: Three Moms in the Trenches
10/22/21 • 43 min
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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“)
Want to know more?
Join our facebook page
Our websites:
Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman
Better Mental Illness Outcomes through Community Collaboration: CIT
Schizophrenia: Three Moms in the Trenches
09/30/21 • 47 min
Send a Text to the Moms - please include your contact info if you want a response. thanks!
“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?
HBO Documentary “Ernie and Joe” - https://www.hbo.com/documentaries/ernie-and-joe
Want to know more?
Join our facebook page
Our websites:
Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman
Not Like the Others: Katie's Story of Mental Illness and Recovery
Schizophrenia: Three Moms in the Trenches
10/29/21 • 45 min
Send a Text to the Moms - please include your contact info if you want a response. thanks!
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:
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“)
Want to know more?
Join our facebook page
Our websites:
Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman
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FAQ
How many episodes does Schizophrenia: Three Moms in the Trenches have?
Schizophrenia: Three Moms in the Trenches currently has 107 episodes available.
What topics does Schizophrenia: Three Moms in the Trenches cover?
The podcast is about Suicide, Health & Fitness, Stress, Parenting, Kids & Family, Mental Health, Family, Podcasts, Trauma and Mental Illness.
What is the most popular episode on Schizophrenia: Three Moms in the Trenches?
The episode title 'Navigating Psychosis & Behavioral Health Systems: Against All Odds: Dr. Gary Tsai (ep. 52)' is the most popular.
What is the average episode length on Schizophrenia: Three Moms in the Trenches?
The average episode length on Schizophrenia: Three Moms in the Trenches is 50 minutes.
How often are episodes of Schizophrenia: Three Moms in the Trenches released?
Episodes of Schizophrenia: Three Moms in the Trenches are typically released every 9 days, 23 hours.
When was the first episode of Schizophrenia: Three Moms in the Trenches?
The first episode of Schizophrenia: Three Moms in the Trenches was released on Jan 14, 2021.
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