Let’s Talk about the Law - Mental Illness and Legal Matters, Part One

Show Notes

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 illness)  be legally required? Enforced? In what circumstances/places?  By whom (who has the authority)? 

• Hospitalization/ Involuntary commitment in mental illness

• Hearings re disability, etc.

• What’s it like on your side of the bench? What goes into the judgments you make regarding mental illness and conservatorship? What do you look for when you meet someone who may need to be conserved?

• Who make the best conservators? Family members or professional conservators?

• What is the “black robe effect?” Does it work?

Much more to come in Part Two, episode 13

https://schizophrenia3momsinthetrenches.buzzsprout.com/1604296/8290479

Marijuana and Schizophrenia - Friends or Foes? (Episode 11)

Show Notes

 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 later cause schizophrenia, could marijuana use still cause psychosis and later schizophrenia? 

3 How are the stronger new strains of pot different from the old stuff? 

4. What is the chemistry of THC that is so bad for people with schizophrenia.

 5. For those who use marijuana and then develop schizophrenia, is their schizophrenia worse than if they had not used marijuana? Examples? 

6. Since you are a child psychiatrist, what things can families and schools do to prevent young people from using drugs and later developing mental illness? What are early indicators that such prevention is needed? 

7. Once a person is using drugs and has schizophrenia, what can best help them? Is there any progress in MICD (Mental Illness with Chemical Dependency)  treatments? 

8. What do you have to say about parents who are told they are "enabling?" 

9. Does the media (movies, TV, etc) glamourize marijuana use and what should we teach our kids?

 10. Where have we made the most progress so we can have some hope for the future?

https://schizophrenia3momsinthetrenches.buzzsprout.com/1604296/8248769

Rebuilding Life When you Have Schizophrenia: Rebecca’s Story, Part 2

Show Notes

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 dyskinesia, and it’s so..frustrating.” -Rebecca 

“When I take my meds, it’s not just for me. It’s for my family, my friends. Not just for me. That was a real big turning point.” -Rebecca

“The same types of thoughts haunt me when (the meds) start wearing off.” Rebecca 

“Four pillars of recovery (treatment, structure, purpose, love/community): these are not ‘mental illness needs’ - these are human needs.” -Randye

“When you have a mental illness such as schizophrenia, there are a lot of secrets...or shame...it’s hard to understand, and I think we need to give each other grace.”

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.

LINKS:

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

Randye and her book: https://benbehindhisvoices.com/

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

Rebecca’s book, Heart to Heart:

https://www.amazon.com/gp/product/0840792190/ref=dbs_a_def_rwt_hsch_vapi_taft_p1_i0

“Living with Schizophrenia” Documentary: 

https://youtu.be/48YJMOcykvc

LEAP Foundation (Dr. Xavier Amador):

LEAP® (Listen-Empathize-Agree-Partner) is an evidence-based approach that shows you how to quickly gain the trust of someone you are at odds with.

https://lfrp.org/home

Dr Harriet Lerner :

https://www.harrietlerner.com/

https://schizophrenia3momsinthetrenches.buzzsprout.com/1604296/8122245

Rebuilding Life When you Have Schizophrenia: Rebecca’s Story

Show Notes

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 what you were going through?

• Lowest point, and turning point: when things turned around - what clicked? the right doctor? the right medication? Your own awareness? The right words at the right time?

LINKS:

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

Randye and her book: https://benbehindhisvoices.com/

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

Rebecca’s book, Heart to Heart:

https://www.amazon.com/gp/product/0840792190/ref=dbs_a_def_rwt_hsch_vapi_taft_p1_i0

“Living with Schizophrenia” Documentary: https://youtu.be/48YJMOcykvc

Quotes:

“When I was 17, I started sleeping in my closet...it was like I was trying to escape my mind” - Rebecca

“When I was 18, I was sleeping in the bathroom in the art building because I thought I was in danger.” - Rebecca

“I was so scared that I’d have to be in a group home for the rest of my life...and I’d die there” - Rebecca

“The psychiatrist sat across from me and he said ‘I know your family member can accept your illness, but can you accept your illness?’...and something in my psyche shifted..and I thought ‘I actually have a choice here.’” - Rebecca

“I accept (and I don’t always do it with joy) -I accept that I have an illness. It’s a daily thing, and it’s taken years and years of struggle.” -Rebecca

“The voices  - the thoughts - were saying to me ‘flush all your medication down the toilet’” - Rebecca

https://schizophrenia3momsinthetrenches.buzzsprout.com/1604296/8121284

Beyond our Borders: Mental Illness in Romania

Show Notes

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:

1. Deinstitutionalization, esp. After break from communism in 1989, then joining European Union in 2007 - where do patients go once discharged?

2. Disparities between the urban and rural area in terms of services provided

3. Stigma/secrecy - people diagnosed, and their families

4. Employment for those with SMI -importance, availability

5. Awareness in the field, who are the main actors, and what is the families and members involvement

6. 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 Association from Scotland and Romanian League of Mental Health and it is the first Romanian organization created for adults with mental health challenges. It's a network of day community care centers and accommodation services that were certified and recognized at local and national level.

They work with:

• Families and friends of people with mental

• health problems

• Community membres

• Adults with mental health problems

• Representatives of local and central authorities

• Adults with temporary problems of adjustment

• and communication

• Mental health specialists

About our guest:

A passionate professional, focused on achieving results, with eighteen years activity in serving communities and vulnerable groups. Ten years as director of social services provider NGO. Experience in organizational and project management, mental health services development, national and international partnerships development, human rights, and advocacy in mental health field.

EDUCATION in US (current) 2020-21

Humphrey School of Public Affairs, University of Minnesota

Humphrey International Fellow, Affiliated with Fulbright Program

https://schizophrenia3momsinthetrenches.buzzsprout.com/1604296/8067904

"They Die with their Rights On” - Our Broken System of Emergency Psychiatry

Show Notes

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 antipsychiatry movement - harmful or helpful?

IMD exclusion

HIPAA

https://schizophrenia3momsinthetrenches.buzzsprout.com/1604296/7990354

Conservatorship for Schizophrenia: Who Needs it? Why? and How?

Show Notes

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

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 make..” - Randye

“They burglarized our home for drug money. It was going from bad to worse. And all of his mental health workers said there’s nothing that we can do. He’s his own person.” - Mindy

“Society does recognize schizophrenia or any of its versions as vulnerable.” - Mindy

https://schizophrenia3momsinthetrenches.buzzsprout.com/1604296/7900045

Family Stories and Top Five Grassroots Changes in Serious Mental Illness: Dede Ranahan, part 2

Show Notes

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

https://schizophrenia3momsinthetrenches.buzzsprout.com/1604296/7744891

64+ Family Stories and Grassroots Change: Dede Ranahan and 64 More Moms, Part 1

Show Notes

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

https://schizophrenia3momsinthetrenches.buzzsprout.com/1604296/7673758

Let's talk about the voices - What the heck is schizophrenia ?

Show Notes

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 my mom’ which makes me think ‘what are the voices telling him about me?’”- Randye 

“Sometimes he’ll do a reality check on the ‘voices.’  He’ll say ‘Mom, did you just say you don’t like me?’ And I assure him I would never say that” - Mindy

https://schizophrenia3momsinthetrenches.buzzsprout.com/1604296/7516468

Getting Help:Low Points, Wild Goose Chases and Lifelines

Show Notes

• 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 

https://schizophrenia3momsinthetrenches.buzzsprout.com/1604296/7392658

Who we are, what we know, how to cope

Show Notes

• 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

https://schizophrenia3momsinthetrenches.buzzsprout.com/1604296/7282747