Our son, Matt, was diagnosed with schizophrenia in February 2017 and died in May 2017. In those three months, I was a researching fiend. I was determined to find a way to help our son, but to my everlasting sorrow, we ran out of time.
I have a lot of information on research and ideas for how to help someone with serious mental health issues that I was never able to try with Matt. I’m posting it with the hope that it might help someone else. I continue to add resources from the readers of MKRO. Note that some of it is traditional and some of it goes into very woo-woo theories. It’s information gathered in one place for you to evaluate and decide for yourself if it can help you in some way.
If you or your family member is struggling with a serious mental health issue, I am so sorry. I wish, with all my heart, that something in my research resonates and helps you find a way to recover or at least a way to live and thrive with this illness.
And yes, I used the word recover. In spite of what the mental health professionals told us, people can and do recover from serious mental health illnesses and others find ways to live with their illness while living full productive lives.
If you know of anything that should be added to this list, please email me with the information so we can make this list the go-to resource guide built by people with lived experience.
If this is something of interest to you, please read on. If this does not affect you, first, thank your lucky stars, then share it with others who may not be so fortunate.
I think the most important thing you can do is to work with people who believe in recovery. Hope is very important for everyone involved, while hopelessness will suck the life out of you. There is a “recovery movement”, “peer mentors” and “peer respites” all run by people who have recovered from psychosis or other severe mental illnesses, many of whom went through years of struggle, in and out of hospitals and crisis. These people, with lived experience, are reaching out and trying to help others to recover and offering hope and strategies that the medical community has not offered.
There is no one solution for any serious mental health illness. Every person has different symptoms and reactions and each responds differently to the medications and treatment strategies. For that reason, you will need to evaluate all of the information and decide what works best for you. Note: This is in no way a comprehensive list, just the start of information I’ve gathered.
TREATMENT/THERAPY
Homes for Recovery: A directory of places for people in crisis to go to for 1-7 days. It’s run completely by people with lived experience from psychosis and everyone affiliated (including board members) must be in recovery. (peer respite)
Still Waters Peer Respite Program – (Grand Rapids, Michigan) – Peer respite program offers alternative to in-patient care.
Open Dialog Therapy in the US – Open Dialog Therapy has shown great promise as a treatment for serious mental illness. It’s a program that started in Finland, that is a client-centered form of psychotherapy that aims to be responsive to the needs of the whole person – rather than simply treating his or her symptoms. There are now places in the US that are working with the open dialogue program. – Mary Olson, founder
Dialogic Practice -The only North American teaching facility that specializes in providing world-class training in Open Dialogue and Dialogic Practice delivered by the field’s leading experts and developers. This site has good resources, maybe can direct you to a therapist that uses Open Dialog, and they offer an Open Dialog skills course for parents of teenagers/young adults.
Therapist, Will Hall (lived experience) – one of the original members of the recovery movement, now does therapy, including via skype sessions.
Therapist, Dr. Jed Bopp, Boulder, CO, believes in recovery. He is a psychologist who specializes in thought disorders and practices Cognitive Behavioral Therapy. I’ve included him because he’s the first therapist who gave me hope. He said, people can recover from severe mental illness – and after so many told me they won’t even bother with patients like this it was a rare moment of hope. I don’t know if he does skype therapy but throwing it out there.
Therapist, Paul Levy, Portland, OR, believes in recovery. Works with spiritual emergence.
Depression, Bipolar Support Alliance – this is a site that offers support to the person suffering but also their family. It has support groups both in-person and online and many (if not all) of the group leaders have lived experience.
Families Healing Together – an online course with other struggling families.
The Hearing Voices Network – It’s believed that 5% of the population hears voices and continue to lead productive lives after they learn how to control and work with their voices.
MIA Online Parent Support Group – A space where parents can exchange information and share experiences to foster a dialogue that goes beyond the predominant mainstream medical treatment model.
BOOKS/MOVIES/YouTubes
Anatomy of an Epidemic – book by Robert Whitaker (see also Mad In America website below)
How to Change Your Mind – book by Michael Pollan. (note this is not for people who suffer from any psychosis but is for people suffering from severe depression and anxiety. It’s thought-provoking about the use of hallucinogenic drugs and the government-supported clinical trials going on today at Johns Hopkins among other places.
Dr. Xavier Amador – I am Not Sick, I Don’t Need Help, a two-part series. I’m Not Sick, Part 1 and I’m Not Sick, Part 2, YouTube videos well worth watching. Dr. Amador does a good job of helping us understand that people experiencing psychosis are not in denial, that part of their illness is “anosognosia” – which is the inability for rational thinking. What they see/hear/believe is 100% real to them. When Dr. Amador was in college, his older brother was diagnosed with schizophrenia.
Below are a couple of movies that really hit home for us. Note that they scared the hell out of us and are heartbreaking but they also gave us hope.
- Crazywise movie compares the way people are treated in third world countries vs developed countries. A spokesperson for the UN said if you suffer psychosis you have a much greater chance of recovery if you live in a third world country. This movie promotes the idea of “spiritual emergence”.
- Be Vocal movie, follows 3 survivors who are peer support mentors. (Be Vocal Speak Up Documentary)
- Dr. Rufus May – the doctor who hears voices documentary
- Take These Broken Wings interview with the man on the street and two women with severe SZ who have recovered and live productive lives
- Eleanor Langden ted talk where she talks about her experience of hearing voices.
- Beyond Possible: How the Hearing Voices Approach Transforms Lives – This short film offers a few first-hand accounts of the life-changing power of this profoundly human approach to the often frightening experience of hearing voices, seeing visions and other unusual experiences.
WEBSITES
Many of these offer “alternative thinking”
Mad In America – founded by Robert Whitaker, author of Anatomy of an Epidemic
Foundation for Excellence in Mental Health Care
Spiritual Emergence Website – gives referrals to therapists who work with spiritual emergence
Center For Spiritual Emergence
Chris Hancock, Therapist. Support for Extraordinary Experiences – I’ve got him down here because I really don’t have enough information about him but from what I’ve read so far, he looks promising. I’d recommend doing more research, getting recommendations, etc.
INTAR – the international network toward alternatives and recovery, director Dr. Peter Stastny.
International Bipolar Foundation – a place to find resources, share your lived experience, and connect with others.
Mind Freedom International / Iaacm- International Association for the advancement of creative maladjustment – David Oaks (survivor) Oregon, fight for human rights for people labeled mentally ill, challenge psychiatric drug industry, promote effective options in mental health.
Freedom Center – Massachusetts, a peer-run organization run totally by volunteers, was the first in MA and many holistic options, against psychiatric abuse and med abuse, etc. because of them, MA now offers a peer-run organization, The Western Mass Recovery Learning Center.
Western Mass Recovery Learning Center – supports healing and growth for individuals and the community as a whole through learning opportunities, advocacy, peer-to-peer support and the development of regional and national networks.
I Got Better – aims to challenge the dominant narrative of hopelessness in mental health care by making stories of hope and mental wellness widely available through a variety of media.
NAMI – National Alliance on Mental Illness
I hope with all my heart that something here gives you hope and can truly help you. Good luck. Kindness always. Jackie
Please, please, if you have anything to add to this list, put it in the comments below. I want to hear from people who can share from their own experiences what has helped them or their loved ones. This list will continue to grow as suggestions come in.
RESOURCES RECOMMENDED BY READERS OF MKRO
(Email me if you have suggestions to add to this list. Thank you.)
TREATMENT/THERAPY
Ron Unger – a clinical social worker in Eugene, OR who works with people diagnosed with schizophrenia and other psychotic disorders. He doesn’t do skype sessions, only in person.
Paris Williams – a psychologist in New Zealand, who works with serious mental illness and wrote a book called Rethinking Madness
Michelle Glass – a spiritual emergence coach and Integrative Interfaith and Esoteric Minister, works with the IFS method (internal family systems) of therapy. “She is not a licensed professional, but probably has better training than many who are!”
Dominic Candido – a clinical psychologist who practices in Lebanon, NH
Kermit Cole (works with Louisa Putnam) – clinical psychologist, uses Open Dialog and practices in Santa Fe, NM
Louisa Putnam (works with Kermit Cole) – A licensed family therapist, I work with families in crisis, using a process inspired by Tornio, Finland’s Open Dialogue approach. Her current practice is in Santa Fe, NM. She can be reached via phone at (505) 814-1460
Nazlim Hagmann, MD is a leading psychiatrist and trauma specialist in New York City. Open dialogue practice. Holds a certificate in trauma studies from New York University. Throughout her career, Nazlim has had a particular interest in understanding and finding alternative and more humane ways to work with people in extreme states. She maintains a private practice in New York City.
Rebecca Hatton is a clinical psychologist in independent practice in Ann Arbor, MI specializing in psychotherapy with people experiencing psychosis. She uses Open Dialog in her practice. She started and facilitated the Ann Arbor chapter of Hearing Voices Network.
Nolan Robinson Foundation – they raise funds for mental health treatment for young people (under 21) who have been diagnosed with depression, anxiety or attention deficit disorder regardless of their ability to pay.
Now I See a Person Institute (NISAPI) is a non-profit teaching and clinical institute (California) devoted to helping people achieve complete and sustainable recovery by pairing the normalcy of a horse ranch and the nurturance of horses with a philosophy of postmodern collaborative practice. Here, people are seen as who they are as persons rather than their diagnoses, and we identify and nurture the inherent positive strengths and self-agency of each client and family member to facilitate their journey of healing. All of our clients are “high risk” individuals who have lost hope after previous therapy, medication, or hospitalization and/or who have been considered unchangeable by previous mental health providers. There’s a wonderful article about them at Mad In America.
Dwayne R. Stone, LMHC,MS – Dwayne was interviewed in Crazywise. He is passionate about working with those with the worst DSM labels.
Julie Kipp – is a Clinical Social Worker/Therapist who works with people who have been given challenging diagnoses including psychotic disorders. She practices in New York, NY. (I could not find a website but was given her email.). Email: julie_kipp@me.com
Inner Fire in Brookline, VT. Inner Fire is a proactive healing community offering striving individuals the choice to recover from debilitating and traumatic life challenges and strengthen themselves on a physical and deeper soul-spiritual level with minimal use of the mind-altering psychotropic medications.
Spring Lake Ranch in Cuttingsville, VT. For nearly a century, work therapy has been at the center of our residential treatment program. Daily tasks of feeding and caring for animals, planting seeds and harvesting vegetables, building barns and constructing furniture, or tapping trees and splitting firewood all provide structure and routine through meaningful work. Participation in the Work Program also allows residents to build and foster confidence and self-efficacy by seeing projects through from start to finish while having therapeutic conversations with staff and other residents during the entire process.
Melissa Elliott – She has been using methods of treatment very similar to open dialog for years. She is a clinical nurse practitioner and very good at what she does. You will have to look up her contact information but she is at the University of Virginia, Department of Psychiatry and Neurobehavioral Sciences.
Aaron Carter – a therapist who practices in Summerville, MA and uses Open Dialog.
Hallucinogenic drugs show promising results for a number of mental health issues including severe depression, PTSD, and anxiety. These include psychedelics (LSD/Mushrooms), Ketamine, and MDMA.
Dialectical Behavioral Therapy (DBT) is a type of talk therapy for people who experience emotions very intensely. It’s a common therapy for people with borderline personality disorder, but therapists provide it for other mental health conditions as well.
Books/Movies/YouTubes/Podcasts
Rethinking Madness book written by Paris Williams (psychologist listed above)
The Soul In Depression – Christa Tippet, from On Being – she and her 3 guests all discuss their experience with severe depression.
WEBSITES
Active Minds is a national leader for young adult mental health advocacy and suicide prevention. Active Minds brings to mental health what no other organization can — the voice of young people who are disproportionately affected by mental illnesses and the way mental health is addressed on campuses and in society at large. Our programs and services empower young adults to reduce the stigma surrounding mental health, create communities of support, and ultimately save lives.
To Write Love on Her Arms is a nonprofit movement dedicated to presenting hope and finding help for people struggling with depression, addiction, self-injury, and suicide. TWLOHA exists to encourage, inform, inspire, and invest directly into treatment and recovery.
Find Your Anchor – the goal of the Find Your Anchor movement is suicide prevention, awareness, and education. They will send a small blue box packed with various materials designed to inspire, soothe and offer support to those suffering and to people who want to help by placing the boxes in public places (the library, the Vegas strip, etc.) to be found by those in need; specifically those close to suicide in one way or another. The boxes are intended to be organic in the sense that each person can add to the box their own inspiration and anchors before passing it along.
Warfighters ADVANCE – changes the trajectory of the warfighter’s post-deployment life, so that rather than an existence characterized by an endless cycle of mental illness diagnoses, medications, medical appointments, and disappointments, the warfighter has a life characterized by pride, productivity, healthy relationships, continued service, and advocacy for the same outcomes for their fellow service members.
Recovery From Schizophrenia – Ron Ungers (therapist listed above) site has a lot of good information.
The International Society for Psychological and Social Approaches to Psychosis (ISPS) – They promote treatments for people with psychosis. They are committed to advancing education, training, and knowledge of mental health professionals in the treatment and prevention of psychotic mental disorders.