Schizophrenia: Three Moms in the Trenches
Randye Kaye
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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.
Available episodes
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Oldest first
Sep 30, 2021
Better Mental Illness Outcomes through Community Collaboration: CIT
*“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*
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Sep 20, 2021
Schizophrenia and the Family: Is There Hope Beyond Hidden Valley Road?
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
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Aug 28, 2021
From Politics to Providers: Advocating for System Change in Serious Mental Illness -
*“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/*
* *
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Aug 12, 2021
Episode 23- You Are not Alone - Stories of Family emotional Journey with SZ
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**“)*
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Aug 5, 2021
From Schizophrenia / Addiction, through Treatment, to Success: Carson's Story
*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**“)*
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Jul 14, 2021
Tools of Hope: Family Empowerment and Care Coordination in Mental Illness
*
**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*
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Jul 7, 2021
Schizophrenia in Entertainment - Film, TV, Novels: Accurate or Insulting?
*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.*
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Jun 9, 2021
Siblings: My Brother or Sister has Schizophrenia - What About Me?
*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*
* *
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Jun 2, 2021
Rethinking Clozapine: Should it be the First Resort to Treat Schizophrenia? - with Dr. Robert Laitman
*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,*
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May 13, 2021
What Schizophrenia Steals - Emotions Deeper in the Trenches
*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**“)*
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May 4, 2021
AfterWords - Stopping the Revolving Door - Assisted Outpatient Treatment
S*ometimes 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*
*
*
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May 4, 2021
Stopping the Revolving Door - A Powerful AOT Success Story
*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 in** **Bedlam**, **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 Outpati…
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Apr 15, 2021
NAMI’s Family to Family Program - Mental Illness Education, Support, Strategies and More
*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…
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Apr 7, 2021
Let’s Talk about the Law - Mental Illness and Legal Matters, Part Two
*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…
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Apr 7, 2021
Let’s Talk about the Law - Mental Illness and Legal Matters, Part One
*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 i…
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Mar 31, 2021
Episode 11 - Marijuana and Schizophrenia - Friends or Foes?
* 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 lat…
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Mar 11, 2021
Rebuilding Life When you Have Schizophrenia: Rebecca’s Story, Part 2
*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 dyskinesi…
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Mar 11, 2021
Rebuilding Life When you Have Schizophrenia: Rebecca’s Story
*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…
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Mar 3, 2021
Beyond our Borders: Mental Illness in Romania
*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 A…
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Feb 21, 2021
"They Die with their Rights On” - Our Broken System of Emergency Psychiatry
*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 an…
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Feb 16, 2021
Conservatorship for Schizophrenia: Who Needs it? Why? and How?
*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*
*
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*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 m…
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Feb 8, 2021
Family Stories and Top Five Grassroots Changes in Serious Mental Illness: Dede Ranahan, part 2
* 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*
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Feb 4, 2021
64+ Family Stories and Grassroots Change: Dede Ranahan and 64 More Moms, Part 1
*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*
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Jan 27, 2021
Let's talk about the voices - What the heck is schizophrenia ?
* *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…
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Jan 20, 2021
Getting Help:Low Points, Wild Goose Chases and Lifelines
* *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 *
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Jan 13, 2021
Who we are, what we know, how to cope
* *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*
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