Schizophrenia: Three Moms in the Trenches

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What Will Happen When We’re Gone? Trusts, Pooled Trusts and More-Ep. 99

Guest: Megan Brand,  Colorado Fund for People with Disabilities Executive Director

Dani Page, JD (her other episodes with us are Episodes 50 and 70)

In its simplest form, a Trust is a relationship, in which one person holds title to property, subject to an obligation to keep or use the property for the benefit of another..

We ask:

• Can we use Trusts to help our loved ones with SMI - now, and after we are gone?
• Some of the differences between Pooled Trusts and Individual Trusts?
• How to evaluate Pooled Trust Organizations or other Trustees when considering who to name as trustee

• How does the Secure Act impact the ability to provide support through inherited IRA's
• Language in trust documents to cloak our loved ones from creditors getting ahold of trust money needed to support their lives after we are dead.
• What can we set up now so that our loved ones will be okay after we are gone….and not to put a huge burden on their siblings?

Links:

https://www.cfpdtrust.org/

www.cfpdtrust.org

https://nationalplanalliance.org/programs/

https://aptrusts.org/

Elder Law Attorneys:

https://www.naela.org/

Certified Elder Law Attorneys (CELA):

https://www.americanbar.org/groups/senior_lawyers/resources/voice-of-experience/2010-2022/what-cela/

Mindy and her book: https://mindygreiling.com/

Randye and her book: https://www.randyekaye.com/

Miriam and her book: https://www.miriam-feldman.com/

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Our websites:
Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman

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Purpose, Belonging, Community: Starting and Opening an International Clubhouse for People with MI -Ep. 98

A New International Clubhouse in Minnesota, USA!

Guests:

Karina Forrest Perkins , Chad Bolstrom, Vail Place 

Nishi and Margaret, Members

Vail Ramsey County Clubhouse in MN, USA had a huge turnout for its Grand Opening event and ribbon cutting ceremony. Vail Communities in Minneapolis is spearheading the Clubhouse expansion.

The Clubhouse is a "One-Stop Shop", functioning as a community-based hub, a single point for people to access, integrate, and coordinate a range of services to work toward mental health recovery.

How Can YOU start one?

The Vail Communities Clubhouses are just two of over 300 programs that follow the Clubhouse Model. A Clubhouse is a place where members and staff work together side-by-side to operate all aspects of the Clubhouse. The Clubhouse can also help with housing, employment, education, health and wellness and so much more. The Clubhouses also offers a wide variety of social, recreational, and cultural events and activities.

Links:

https://vailcommunities.org/clubhouses

• https://clubhouse-intl.org/what-we-do/what-clubhouses-do/
• https://clubhouse-intl.org/our-impact/clubhouse-outcomes/
• https://www.vailplace.org/join/clubhouse-program/
• https://edition.pagesuite.com/popovers/dynamic_article_popover.aspx?guid=bf1bddf3-b973-4d4d-a523-1d62aa732684&v=sdk&appcode=STP731&eguid=3368cea9-0776-4c6c-86cd-7d731136318b&pnum=1
• https://www.minnpost.com/mental-health-addiction/2024/02/vail-place-poised-to-open-mental-health-clubhouse-in-st-paul/
• https://www.youtube.com/watch?v=YLzfYUQ76gc

Mindy and her book: https://mindygreiling.com/

Randye and her book: https://www.randyekaye.com/

Miriam and her book: https://www.miriam-feldman.com/

Support the show

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Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman

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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)

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

https://johnnysambassadors.org/conference/

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Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman

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“Guest Mom” Laura Pogliano

The Johns Hopkins Schizophrenia Symposium brings together world-renowned experts in psychiatry, mental health, and neuroscience in order to present diverse aspects of the disorder, discuss their findings with colleagues, and be available to answer attendees’ questions.

 This year, the speakers presented their cutting-edge and multidisciplinary approaches, including those that interfere among molecular pathology, digital science, public outreach, and clinical psychiatry.

Families were invited to attend - for FREE - and could attend a panel discussion the night before, plus the chance to participate in  round-table lunch discussions with the speakers.

Through this symposium, they hope to translate the efforts of the lab bench to the bedside, and eventually to society by discussing and addressing schizophrenia and other mental illnesses from both clinical and scientific standpoints.

The symposium was open to all: researchers, clinicians, and family members of those diagnosed with schizophrenia.

It was amazing. Here Mimi and I review what we learned, along with friend of the podcast, Laura Pogliano. (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/

Support the show

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

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No One Cares About Crazy People is a feature documentary film-in-progress about the tragedy, crisis and chaos of severe mental illness in America – and a burgeoning national crusade to do something about it

NO ONE CARES ABOUT CRAZY PEOPLE takes us inside the tragedy, chaos, and crisis of severe mental illness in America. It derives in part from Ron Powers’ acclaimed book of the same name, a hybrid narrative of tragic family memoir and searing social history.

Guest: Gail Freedman, Director & Producer

Your support is critical to help us complete this film and tell the powerful stories that can be a catalyst for new understanding and action. All gifts, grants and donations are fully tax-deductible.

Links:

https://noonecaresfilm.com/

Congrats Aiden Keltner, friend of the podcast! @amazinggraceshortfilm received 3 of the 4 Emmys we were nominated for including, Arts Entertainment Program, best director and best performer!

Amazing Grace Film 

An aging single mother fights to hold onto the only life she’s ever known as her son with schizophrenia begins to lose his sanity.

Mindy and her book: https://mindygreiling.com/

Randye and her book: https://www.randyekaye.com/

Miriam and her book: https://www.miriam-feldman.com/

Support the show

Please share and support the podcast so we can reach more people who need the info and support.

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

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“Chris had a "tumultuous" time several years ago, dealing with the onset of schizoaffective disorder, but has overcome addiction and homelessness and established stability for himself, while also being an extremely productive artist.

His artist name, as well as his social media handle, is xoradmagical.

He's done one film for the National Film Board of Canada and is working on another.

He's prolific on TikTok, where he describes his posts as "a personal virtual diary that everybody is allowed to look at."

Chris was diagnosed with schizoaffective disorder in 2017 at the age of 20. It's a mental health condition that includes hallucinations or delusions and mood disorder symptoms such as depression or mania.”

(source: cbc.ca)

Ever wonder what psychosis feels like. From someone who has experienced it and now has the insight so many of our loved ones do not have?

We’re lucky to have permission instead to repost this recording from The Schizophrenia Society of York University in Canada.

SSY collaborated with the Schizophrenia Society of Canada (SSC) for this - their 4th annual panel event, "Duality of the Reality: Living with Psychosis." 

The purpose of this event is to hear real-life lived experiences and stories of success, hope, struggles and coping from individuals diagnosed with schizophrenia and psychosis.

LINKS:

cbc.ca story on Chris:

https://www.cbc.ca/news/canada/new-brunswick/twins-pabineau-first-nation-tristan-grant-chris-1.6883003?fbclid=IwAR0fNDPFLO1ZQvP_iJb4PNFHuOEMpTDGOPD_c04nZ0bM9ZiE_U9KaI76--o_aem_th_AbJBg2jdgv7pP_Wze-PqjOWv_HtBzAM-gkYz3_qYXcLrl7TayaWPV6HkGS2XyPy4wes

Schizophrenia Society of Canada:

https://schizophrenia.ca/

Schizophrenia Society of York Instagram:

https://www.instagram.com/ssyyorku/?hl=en

Christopher Grant linktree:

https://linktr.ee/xoradmagical

Matthew Dickson Mind Aid:

https://www.mindaid.ca/

Mindy and her book: https://mindygreiling.com/

Randye and her book: https://www.randyekaye.com/

Miriam and her book: https://www.miriam-feldman.com/

Support the show

Please share and support the podcast so we can reach more people who need the info and support.

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

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

This is Part 2 - Matthew’s Story. Here is his bio:

“Hi, I'm Matthew Dickson! I'm a Canadian who helps people in developing countries get access to basic mental health care. I've suffered from mental health problems myself (schizophrenia).

I bicycled across Canada when I was 20 in the middle of getting an engineering degree. 

But at 22 I was diagnosed with schizophrenia.  

It took awhile, but I successfully recovered from schizophrenia, and in 2023 I bicycled across Canada again, becoming the first person with schizophrenia to do so!

 Recovery is possible! Now I'm trying to help others going through mental illness, primarily in developing countries, as they have it worse than we do in developed countries.”

Ever wonder what psychosis feels like. From someone who has experienced it and now has the insight so many of our loved ones do not have?

We’re lucky to have permission instead to repost this recording from The Schizophrenia Society of York University in Canada.

SSY collaborated with the Schizophrenia Society of Canada (SSC) for this - their 4th annual panel event, "Duality of the Reality: Living with Psychosis." 

The purpose of this event is to hear real-life lived experiences and stories of success, hope, struggles and coping from individuals diagnosed with schizophrenia and psychosis.

LINKS:

Schizophrenia Society of Canada:

https://schizophrenia.ca/

Schizophrenia Society of York Instagram:

https://www.instagram.com/ssyyorku/?hl=en

Christopher Grant linktree:

https://linktr.ee/xoradmagical

Matthew Dickson Mind Aid:

https://www.mindaid.ca/

Mindy and her book: https://mindygreiling.com/

Randye and her book: https://www.randyekaye.com/

Miriam and her book: https://www.miriam-feldman.com/

Support the show

Please share and support the podcast so we can reach more people who need the info and support.

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

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

Ever wonder what psychosis feels like. From someone who has experienced it and now has the insight so many of our loved ones do not have?

We’re lucky to have permission instead to repost this recording from The Schizophrenia Society of York University in Canada.

 SSY  is the first and only schizophrenia awareness club organization at York University. 

It  raises awareness and humanizes individuals diagnosed with schizophrenia. They provide a voice for people with schizophrenia and other mental illnesses, and create an atmosphere of de-stigmatization at York University.

SSY collaborated with the Schizophrenia Society of Canada (SSC) for this - their 4th annual panel event, "Duality of the Reality: Living with Psychosis." 

The purpose of this event is to hear real-life lived experiences and stories of success, hope, struggles and coping from individuals diagnosed with schizophrenia and psychosis.

I was delighted to join Christopher Grant (artist known as xoradmagical on social media), and Matthew Dickson (bicycled across Canada to raise funds for mental health services).

You’ll hear the panel in three parts - First,  my story of the family POV when psychosis occurs, then Matthew, then Christopher - who reminded me so much of my son Ben’s experience, it almost felt like I was having the conversation with him I wish I could have - if there were insight.

LINKS:

Schizophrenia Society of Canada:

https://schizophrenia.ca/

Schizophrenia Society of York Instagram:

https://www.instagram.com/ssyyorku/?hl=en

Christopher Grant linktree:

https://linktr.ee/xoradmagical

Matthew Dickson Mind Aid:

https://www.mindaid.ca/

Mindy and her book: https://mindygreiling.com/

Randye and her book: https://www.randyekaye.com/

Miriam and her book: https://www.miriam-feldman.com/

Support the show

Please share and support the podcast so we can reach more people who need the info and support.

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Our websites:
Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman

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

In this episode, listeners tell us what's on their minds and we answer as best we can.  We talk about anosognosia, incarceration, psychotic delusions, what we would have done differently if we'd known then what we know now, and lots more.

We open with a poem by a listener who is diagnosed with SZ:
Dale Walsh Poem - “I am a recovered reaching out help lessen the challenges encountered by family caregivers”

Source Of My Unique Thinking

Seeing laughter from challenged kid

Reminds me of all things I hid

About everything I did

And Joke I made was big mistake

As claim "I'm GOD" I did make

Which at last turned out to be fake

Though reason I sought out Godhead

Was due to a great sense of dread

I felt knowing I will be dead

At least physically one day

And so I found alternative way

To fight my body's slow decay

By saying I shall live forever

And pass into next life never

Not ready Earth ties to sever

So now I am guided by Lord

Who's my integrity restored

The ONE Whom I always adored.

4/28/24

National Poetry Month

Mindy and her book: https://mindygreiling.com/

Randye and her book: https://www.randyekaye.com/

Miriam and her book: https://www.miriam-feldman.com/

Support the show

Please share and support the podcast so we can reach more people who need the info and support.

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

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

A new book, Awakenings, has just been released. It describes the journeys of 28 remarkable people who are now thriving despite being diagnosed with SZ. The authors and contributors hope to show that with newer treatments, and also social support and therapy, recovery is possible.

Guests: 

Bethany Yeiser, President of CURESZ Foundation (https://curesz.org/) and co-author of the book. The CURESZ Foundation offers advocacy, information, advice, as well as educational and supportive resources to enhance the understanding of schizophrenia as a treatable neuropsychiatric illness 

Leif Gregersen, from patient to hospital faculty 

Lesley McCuaig, athlete and mental health counselor 

J Peters, author and social worker

Each guest will share their stories, and the moms will ask questions.

Links:

Awakenings Book:

https://a.co/d/9fMt9oz

CURESZ:

https://curesz.org/

Bethany TEDx Talk:

https://youtu.be/iPGd6l76l9A?si=ZZI42ecdh24MxZkS

CURESZ YouTube channel:

https://www.youtube.com/@cureszfoundation7671

Here is Lesley's website:

www.lesleymccuaig.com

Leif's blog:

www.edmontonwriter.com

J Peters' blog

https://mentalhealthaffairs.blog/

Mindy and her book: https://mindygreiling.com/

Randye and her book: https://www.randyekaye.com/

Miriam and her book: https://www.miriam-feldman.com/

Support the show

Please share and support the podcast so we can reach more people who need the info and support.

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