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.

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:

1. What was it like for you growing up, as your sibling’s illness began?
2. When did you start suspecting something was wrong? 
3. Did you second guess any things your parents were doing for him?
4. 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:

1. What is hardest for you about your brother's illness?
2. How do your friends feel about him? How do they best support you?
3. Has your life changed in any positive ways because of your brother?
4. Do you see yourself as a mental health advocate? If so, how?
5. What is it like now? Where are you on the “graph of emotions?
6. Do you feel cheated that your mom spends more time with sick sibling? (Cindy Grossman asked - fb)
7. Do you fear that you could also become schizophrenic at any given time? Or your kids? (Kathy Burchett, fb)
8. 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

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:

[email protected]

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,

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“)

Sometimes 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

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 inBedlam, 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 Outpatient Treatmen) and how can it help with SMI (Serious Mental Illness)?

We ask Eric :

• Please tell us a bit about your story and how AOT played into it.
• As mothers, we're happy to see that your parents have participated with you to help educate professionals. If they were here today, what would they say in support of AOT? 
• Did you appreciate their role in you receiving AOT care at the time? If not, how did you heal over time?
• Which people benefit from AOT and why do you include yourself in that group?
• Please describe what AOT services you received? What helped you the most?
• Where do you believe you'd be now if you hadn't benefited from it?
• Do you see any future hope that patient's rights groups will come to see AOT as targeted to just the very severely ill people and that it helps them? Have you received blow back from them?

Quotes:

“I was difficult, I was rude...I was basically “fired” (as a patient) for all the things I needed treatment  for.” - Eric

“The AOT Team recognized that I was being held hostage by my own mind. And they freed me from all of that through a combined effort: psychiatry, social work, a nurse, even an attorney - and a civil court order. ” - Eric Smith

“The most involuntary and coercive and forceful thing I have ever experienced is: my own untreated, undertreated mind”. - Eric

“Fifteen years of failed medication trial and error. Fifteen years of my parents trying to get me the help I needed. Everything had failed.,,AOT is a lifeline, a miracle.”   - Eric

“I was too sick to engage in voluntary care,  and that’s why I’m advocating for something in addition to what you’re advocating for. You’re right...but I’m also right.” - Eric”

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 illness?

Our stories: some increase in awareness of symptoms? Maybe.

Randye’s son Ben: “When I’m not on my meds, I wrestle with symptoms” - First time ever saying that - did he mean it?

Mimi and her son Nick (!)  on ABC news talking about his schizophrenia.

Suzanne’s story as a sibling   and child of someone with mental illness. We aren’t all parents.

What makes NAMI programs different?  -  Peer education approach (lived experience)

What is F2F? (Family-to-Family)? How did it begin? What is covered? How many have been helped?

The rapport   and support that happens and grows in the course of the 8 weeks. 

What changed with the new version (6th edition) released in early 2020

Is it now available online? - COVID and pivot to programs offered online

What other resources does NAMI have for families and people experiencing mental health?

Quotes:

“The lightbulbs went off for me in Family-to-Family...that moment when I really learned ‘oh my god, it’s not my son’s fault’ was so powerful.” - Randye

“My golden nugget was to learn what (my son) Jim still could do. “ - Mindy

“Some people want to talk about how they feel...others are like: give me the information so I can take action. Teach me something so that I have the background, the understanding and the growing empathy.” - Suzanne

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 Schizophrenia and their families? Do you ever wish for more power, or less? 

How much does/should the average Judge know about mental illness before making decisions like these? 

What state laws would you change if you could?  

Issues of Dangerousness, Gun Control , Access 

“Right of Notice” vs “Right to Appear” re hearings for families

Probable Cause hearings 

CIT (Crisis Intervention Training) for Police 

For the 3 moms: What would you most want judges to know?

Judge Lisa: What would you most want family members to know ?

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

 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?