Schizophrenia: Three Moms in the Trenches

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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: [email protected]

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/

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: 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/

Want to know more?
Join our facebook page
Our websites:
Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman

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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 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

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

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/

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!

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/

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!

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/

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 : 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)

1. Oppose legalization of recreational cannabis use
2. Pair any legalization effort with stringent, practical harm-reduction practices.
3. Hold the cannabis industry financially accountable.
4. Implement public health initiatives that educate about the risks of cannabis use.
5. Conduct research into the effects of cannabis use.
6. 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-triggered-son-extreme-psyhosis-awaiting-trial-i-1915792

https://www.psychiatrictimes.com/view/thc-and-adolescents-an-overlooked-issue-in-youth-mental-health

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 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. (she was also with us for Episode 25, with Bob Kolker who wrote Hidden Valley Road)

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.

Speakers:
Sabrina Berretta, MD
Raquel E. Gur, MD, PhD
Brandon Staglin, MS
T. Scott Stroup, MD, MPH
John Torous, MD

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

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

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/

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: 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

Listen on: Apple Podcasts   Spotify

Listen on: Apple Podcasts   Spotify

Want to know more?
Join our facebook page
Our websites:
Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman