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?
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Our websites:
Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman
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Navigating Psychosis & Behavioral Health Systems: Against All Odds: Dr. Gary Tsai (ep. 52)
Schizophrenia: Three Moms in the Trenches
09/15/22 • 42 min
Send a Text to the Moms - please include your contact info if you want a response. thanks!
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.”
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Our websites:
Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman
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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:
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Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman
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Purpose and Community on Recovery Road - Clubhouse Int’l - Episode 30
Schizophrenia: Three Moms in the Trenches
11/18/21 • 54 min
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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/Mindy talks about efforts to create a clubhouse in her state:
https://my.nicheacademy.com/rcladult/course/59353/lesson/169660
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
SMI and the Challenge of Dental Care: Let’s Talk Teeth (Ep. 87)
Schizophrenia: Three Moms in the Trenches
03/28/24 • 55 min
Send a Text to the Moms - please include your contact info if you want a response. thanks!
Guest:
Lauren Yasuda Rainey , DDS
We ask about getting people with schizophrenia to care for their teeth, if/how medications affect teeth, the effect of Medicaid only paying for annual cleanings and check ups, compared to private insurance that pays for twice a year. Many of our listeners have asked for a show on dental issues and of course we are interested too!
Dr. Lauren Yasuda Rainey completed a General Practice Residency at Tufts University School of Dental Medicine.
At Tufts, a majority of her time was treating persons with medically complex needs and managing patients with her co-residents that came through Tufts Medical Center Emergency Department.
Currently she teaches dentists in the US & Canada minimally invasive restorative techniques.
We ask:
1. What do you recommend to patients and/or their families for getting people with schizophrenia and other serious mental illnesses (SMI) to care for their teeth?
2. Do medications, especially psych meds, affect teeth? If so, how?
3. What is the effect of Medicaid only paying for annual cleanings and checkups, compared to private insurance that usually pays for twice a year?
4. What challenges have you encountered in caring for people with SMI?
Links:
@raineydds
https://www.catapulteducation.com/blog/laurenyasudaraineyRandye on Lisa Wexler show re incarceration and SMI:
https://shows.acast.com/6398bb70ee249200127c1182/episodes/randye-kayes-personal
Products:
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.de
Want to know more?
Join our facebook page
Our websites:
Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman
Schizophrenia in Entertainment - Film, TV, Novels: Accurate or Insulting?
Schizophrenia: Three Moms in the Trenches
07/07/21 • 44 min
Send a Text to the Moms - please include your contact info if you want a response. thanks!
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.
Want to know more?
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Our websites:
Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman
Ambiguous Loss - Living with grief caused by SMI (guest: Jerri Clark) (Ep. 85)
Schizophrenia: Three Moms in the Trenches
02/28/24 • 49 min
Send a Text to the Moms - please include your contact info if you want a response. thanks!
We’re delighted to welcome a return guest, Jerri Clark.
Jerri first joined us on Episode 32, “Channeling Grief and Anger into Advocacy and Acceptance”, and is now working with TAC (Treatment Advocacy Center-, see Episode 71 with Kathy Day. Episode 31 with Lisa Dailey, Episode 35 with Sabah Muhammad ), ) as Family Resource and Advocacy Manager. She has a fellowship as TAC’s DJ Jaffe Advocate this year. Jerri is a family member whose son with SMI died from suicide.
The six coping strategies (not linear)
- 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/
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
Channeling Grief and Anger into Advocacy and Acceptance - guest Jerri Clark
Schizophrenia: Three Moms in the Trenches
12/17/21 • 50 min
Send a Text to the Moms - please include your contact info if you want a response. thanks!
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:
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:
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“)
Want to know more?
Join our facebook page
Our websites:
Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman
The Other S-Word: Let’s Talk About Suicide (Ep.86)
Schizophrenia: Three Moms in the Trenches
03/20/24 • 55 min
Send a Text to the Moms - please include your contact info if you want a response. thanks!
Guests are: Karlyn Nelson and Michelle Post
Karlyn Nelson
Survivor of Suicide Loss | Breast Cancer Warrior | Realtor
Michelle Post, M.A., is a Licensed Marriage and Family Therapist (MFC 40198) with nearly 20 years of experience providing counseling and psychotherapy to clients in the greater Los Angeles area
According to the NIMH, People with schizophrenia have a much higher rate of suicide than the larger population: People with schizophrenia have a 10% rate of suicide compared with the larger population’s 1.3%rate of suicide.
Suicide is the biggest reason for the decreased life expectancy of people with schizophrenia.
A larger number of people with schizophrenia contemplate suicide. Around 40–79% of people with schizophrenia have reported having suicidal thoughts.
Saddest fact is that it is at the time of improved insight that most attempts are made. ie. when the person has finally moved past anosognosia and realizes his plight it is with improved understanding that this decision is made.
We Ask:
- 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_Suppor
Want to know more?
Join our facebook page
Our websites:
Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman
Pete Earley: A Father’s (and son’s) Search Through America’s Mental Health Madness
Schizophrenia: Three Moms in the Trenches
07/16/22 • 52 min
Send a Text to the Moms - please include your contact info if you want a response. thanks!
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“)
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 114 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 51 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 10 days, 1 hour.
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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