More from NAMI National Convention

DAY TWO:  NAMI Convention Opening Session

Speakers:

  • Lupe Morin, family advocate, NAMI San Antonio, Tx
  • Rev. Sam Hargrove, CPSS-V, GCDF, U.S. Army (Ret), Raleigh, NC
  • Stacy Hollingsworth, founder, NAMI on Campus Rutger’s, Austin, Tx.
  • Royce White, player, Houston Rockets, NBA, Houston, Tx.
  • Michael Fitzpatrick, M.S.W., executive director, NAMI, Arlington, Va.

The opening session was very inspirational and set the tone for a day packed with special topic sessions and seminars. There are 1,660 people attending the convention.

One comment that stuck with me was “NAMI is a family, a life line of individuals who lift up those who can’t lift up themselves.” That rings so true to me. People turn to NAMI often when they need the support and care that they can’t even give to themselves. NAMI is there with education, support groups and resources.

The Rev. Sam Hargrove spoke about the brave veterans in our country who risk their lives and are returning home with drug addictions, PTSD and other mental health illnesses. He lit a candle and asked the audience to count to 22 in unison…..take a minute right now yourself to count out loud to 22…..

Then he blew out the candle. That symbolized 22 lives being extinguished. Did you know that every day 22 veterans die due to suicide? Sam has a blog and works to further mental health services for persons in our armed forces.

Stacy Hollingsworth is a young adult who was awarded the NAMI Young Leader Award for her groundbreaking work on college campuses through Campus Rutger’s. She produced a PSA titled Labels Hurt.

NAMI has a new initiative called NAMI on Campus Club. They partnered with 2 National Sororities and Fraternities to develop Mental Health Awareness campaign. Often first episodes of psychosis, depression, anxiety, bi-polar disorder and other brain disorders surface during those early adult years while young people are at college. It is important that as an organization we reach out to young adults, college campuses and families to offer the support and education that can be accessed through NAMI.

Royce White of the Houston Rockets shared his struggles with anxiety disorder and his battle to get the NBA to pay attention and provide support and accommodations for NBA players dealing with a brain disorder. He is an inspiration and I loved his quote:

“There’s no running from their ignorance and there is no running from my mental illness.”

Good news….that those of us who have experienced Family to Family….it really works!!!

The Family to Family program has been included in the SAMHSA’s Registry of Evidence-based Programs. This is a huge step for NAMI and helps get the information out to more people about the effectiveness of this family psycho-education program.

There is a National Dialog as the result of the mental health conference in Washington. This National Dialog has brought new organizations in our communities into the discussion of mental health and they want to partner with NAMI. The goal is to create virtual communities at the local level.

NAMI has partnered with the National Association of Broadcasters and you should be on the look out for a PSA to come out in July. Other community partners that have stepped forward are such organizations as the Boys & Girls Club of America, the United Way and the YMCA. This is an opportunity for local affiliates to approach these organizations and begin some community outreach activities.

NAMI has also done research on social media. There are over 65 million users and more people now find things like NAMI through Facebook vs the traditional search engine of Google. The younger generation are more frequent users of Twitter than Facebook. Local affiliates should pay attention to this research and establish Facebook pages to get the information out there to the younger generation.

NAMI is still waiting for clarification on the Affordable Care Act and how it will enhance mental health care.

In conclusion, there are a lot of exciting initiatives and opportunities to share mental health information with more people in our community. Be sure to go to www.nami.org and check out all the news.

Neitcha Thomsen
NAMI Northside Atlanta

DAY TWO: Out of Crisis & Into Treatment: Key Partnerships for Success

Bexar County (pronounced “bear”), Tx, has long been a national model of service integration and collaboration among key agencies serving children and adults with mental illness. This session provided an overview of Bexar County’s model for building a strong infrastructure of community-based services and supports, with particular emphasis on services for youth, transition-age young adults and diverse cultural populations.

  • Leon Evans, The Center for Health Care Services, San Antonio, Tx
  • Gilberto Rendon Gonzales, director, Communications and Diversion Initiatives

The focus of this model was to reduce inappropriate incarceration and hospitalization of persons with a mental illness. They developed a Crisis Care Center and the Restoration center which currently serves over 1000 people a month.  To read about all the services they offer please visit their website at www.chcsbc.org.

They provided CIT training to the police force and worked with them to bring persons who were intoxicated or showing signs of mental illness directly to their Crisis Center. This helps avoid the criminalization of the mentally ill. It also helped the police officers get back onto their patrols faster. In the past their choices were take the person to jail, which they did not want to do since they were not criminals, or take them to the hospital ER which turned into long waits for a psych evaluation. The police department recognized the great benefit to such a degree that they made a video that is shown to police officers during roll call in order to give them the information. The police are able to drop off someone in less than 15 minutes.

Haven for Hope is another program that has a homeless campus and in house recovery programs for men and women. It provides education, treatment, job training, housing, medical care and peer support. They have combined their mental health treatment and substance abuse treatment in order to provide the services for those with a dual diagnosis after they saw such a great need. They also have a program for serial inebriants that is staffed with nurses and peer support specialists. It gives them a safe place to detox while exposing them to peer support specialist who try to get them into treatment. They have seen great success in using motivational interviewing techniques. They believe their key to success is having both crisis mental heal and substance abuse treatment services available in the same location. They provide wrap around services including such things as transportation, medical care, child care and more. They used their data and outcome information to get funding. They were able to show the state and city government how much money they were saving in jail and hospital services and loss of hours for the police department.

You can learn more about all of their programs at www.havenforhope.org/new .

It was amazing to see what could be achieved when community conversations took place and organizations with different goals were able to set a common objective. The presenter promised to post his data slides later on the NAMI National Convention Website.

Neitcha Thomsen
NAMI Northside Atlanta

DAY TWO: Major Depressive Disorder workshop

Putting It All Together:  A Postmodern Model of Major Depressive Disorder

    • W. Clay Jackson, M.D., assistant professor of Clinical Psychiatry, University of Tennessee College of Medicine, Arlington, Tenn.
    • Contact info: mydocjackson@live.com

This workshop covered traditional approaches to the treatment of major depressive disorder which emphasized genetic and biochemical etiologies. This speaker wanted to make a point that the individual’s experience is richer than that and we need to look at the areas of personal, spiritual, nutritional and social constructs.

Dr. Jackson outlined the approaches to the treatment of depression over the years of treatment of the brain disorder.
He proposed that 3 major mistakes have been made:
1. Stigmatization of Mental Illness
2. Separate treatment of Mental Illness from that of medical treatment.
3. The focus on the absence of symptoms as being the goal.

There are genetic and environmental factors that interact. People can have a genetic marker that can then get triggered under certain environmental situations.
Depression is an inflammatory disease. In depression the Amygdala acts like a car alarm that will not turn off.
Currently we are not succeeding in the treatment of depression.

    • 50% of person with depression get treatment
    • 50% of those get inadequate treatment
    • 22% get adequate treatment
    • 2/3 of patients with adequate treatment reach remission

There is a mismatch of patient and clinician expectations. We are attacking the disease phenomenon in contrast to the patients wanting to focus on other things like feeling like themselves again; returning to work, etc. The clinician considers cessation of symptoms of the brain disorder as the most important. When you speak to clients their list of important things put cessation of symptoms lower on the scale of importance. The client values the ability to participate in a meaningful life, return to work or school and deriving a feeling of pleasure from activities as more important.

The focus on depression as an inflammatory disease is being studies more closely. It has been noted that patients with obesity do not respond as well to the anti-depressants being prescribed such as Prozac and Zoloft due to weight gain. There is a lot of stress and inflammation in mental disorders.
Depression drives inflammation. It is described as having “the mother of influenza” all the time. Abdominal fat, where we are seeing the weight gain in persons with brain disorders, is raising their mortality rate. It causes changes all through out the body.

Clinicians are beginning to recognize other forms of treatment besides pharmaceuticals which can have a great impact on biochemical changes in the body which can be helpful in the treatment of major depressive disorder such as:

    • Yoga nidra increases dopamine by 65%
    • Yoga asana increases gabapentin by 27%
    • Prayer and meditation increases frontal lobe activity, thalamus, decreases parietal lobe and the limbic system.
    • Spirituality has an impact on depression in that there is greater emotional stability.

Dr Jackson spoke about the power of relationships and how it can impact a person. Social consecutiveness matters. Being around a happy person has an impact. It has a positive impact on lowering cortisol. Low affect raises the levels of cortisol. Let’s move beyond a better pill and incorporate other important things such as meditation, exercise, spirituality and diet. Depression has been described as the inability to construct a future.

For more information on some interesting research look at Chuck Raison who has conducted interesting research on depression.

This is a link about depression as an inflammatory disorder by Chuck Raison:
http://www.ncbi.nlm.nih.gov/pubmed/21927805

You can also read more about Dr Raison’s research at:
http://psychiatry.arizona.edu/faculty/charles-raison-md

Also check “Beyond the Resistance: Novel Neurobiological Understandings of Depression”:
http://www.psychiatrist.com/webcast/

In conclusion, Dr Jackson proposed that be move beyond the postmodern model of Major Depressive Disorder
to look beyond “the better pill” and to include other forms of treatment in conjunction with pharmaceutical treatments for a better outcome of remission in persons with major depression. He also encouraged clinicians to take into account their client’s idea of remission as being more than the cessation of the clinical symptoms of this disorder.

Neitcha Thomsen
NAMI Northside Atlanta

DAY TWO: Special Presentation: “I’m Not Sick; I Don’t Need Help”

Understanding Anosognosia:  Xavier Amador, PH.D, founder, LEAP Institute, New York, N.Y.

  • The Rona and Ken Purdy Award to End Discrimination was presented to the Vancouver Canucks of the National Hockey League (NHL) at this session.

Relationships: Where treatment and recovery begin.

Isolation is the one common denominator in all mental illnesses.

People commit suicide in isolation. It is crucial to have relationships.

One out of 10 persons die as a consequence of their mental illness. There is a higher mortality rate for those with a mental illness than cancer.

It makes common sense for someone to refuse treatment for an illness they do not believe they have. Would you take an injection of insulin if you did not believe you had diabetes? Anosognosia is a symptom of some forms of mental illness especially in schizophrenia. It should be viewed as a symptom of the disorder and not denial or a coping skill on the part of the person. They are truely unaware that they have an illness. They are unaware of the symptoms that we see in them.

The problem with antipsychotic medications:

  • People don’t take them
  • One out of 4 stop taking them with in the first week.
  • 50% stop taking anti-psychotics after a year
  • 75% stop taking anti-psychotic medications after 2 years.

Things that contribute to adherence to medications:

  • Social support/relationships
  • Awareness of illness

This is why it is so important for persons with anosognosia to have relationships. Relationships are powerful. People will take medications for their disorders because someone with whom they have a close, valued relationship wants them to. We win on the strength of our relationsip. The quality of the relationship with the clinician during the acute phase of the illness also impacts adherence to treatment.

Long acting treatments and medications are indicated. It has been noted that 50% stop oral medications while only 17% stop long acting injections. It has also been reported that motivational interviewing techniques work better for adhearance such as the technique of LEAP:

  • Listen (reflectively)
  • Empathize
  • Agree
  • Partner

Dr. Amador led a demonstration of reflective listening. He also had a demonstration of anosognosia that had quite an impact. He asked for a volunteer from the audience who had never attended any of his lectures. He asked the gentleman who his spouse was. He then proceeded to tell him that actually this was an intervention that had been set up on her behalf during the NAMI Convention and that there was a restraining order against him and he wasn’t really married to her but she and her husband realized he had a mental illness and instead of jail time for stalking were trying to get him into treatment at a hospital. Dr Amador asked him how long he thought he had been married, did they have children, did he remember their wedding, etc. Then he told him there were officers and EMT at the back of the lecture hall to take him to a hospital for treatment and would he accept the help.

It was a great demonstration to help others try to understand what it is like to have this symptom of an illness where things you believe are not reality. I found it very effective in eliciting empathy and understanding about anosognosia. It also demonstrated the difference between it and denial.

If you would like to learn more about LEAP and Dr. Amador you can go to:
www.leapinstitute.org

Dr. Amador had a brother diagnosed with schizophrenia as a young adult who also suffered from the symptom of anosognosia. He was successful in working with his brother to take medications and receive treatment in order to have a more meaningful and fullfilling like through his relationship and the use of LEAP techniques.

Neitcha Thomsen
Nami Northside Atlanta

Interesting PowerPoint presentation on Mentalization from the Nami convention website:
http://www.nami.org/ContentManagement/ContentDisplay.cfm?ContentFileID=200349

DAY THREE: Research Updates—First Episode of Psychosis
  • Ken Duckworth, M.D., medical director, NAMI, Arlington, Va.
  • ModeratorL Kym Bolado, member, NAMI Board of Directors, San Antonio, Texas

Psychosis is a symptom not a diagnosis. We still do not know what causes psychosis.

Over time people do well with schizophrenia. The major long term impairment that is seen is in deterioration in congition. It is very useful to use cognitive enhancement programs. There is currently the discovery of brain plasticity. Brain plasticity (from the Greek word ‘plastos’ meaning molded) refers to the extraordinary ability of the brain to modify its own structure and function following changes within the body or in the external environment. The large outer layer of the brain, known as the cortex is especially able to make such modifications.

Cognitive Enhancement Therapy used early on at the start of psychosis is a hopeful recovery oriented idea. This therapy can actually build capacity. We as local affiliates of NAMI should be looking into how to get Cognitive Enhancement Therapy into our towns. It is extremely valuable to those with schizophrenia and has no negative side effects.

It used to be thought that persons with psychosis would have a steady slow decline. This is now known not to be true. NAMI is very interested in early intervention.

It is important to get early treatment for psychosis. Those with a longer duration of untreated psychosis do worse. Those with 5-10 years of untreated psychosis make it more difficult to gain aspects of recovery.

You can read about research at www.nami.org/psychosis .

There is now more interest in early intervention. Nami is working on how we can help earlier as an organization .

There has been research into the early use of marijuana and the impact on increasing the chances of psychosis if there is the vulnerability in the family of having a mental illness. The literature is quite clear on the impact of marijuana and psychosis especially under the age of 25.

Some other hot reasearch is around fish oil. It has been debunked as a treatment for depression and bi-polar disorder. The newest study has been on the use of fish oil, 2mg a day, and the impact on psychosis. Researchers are seeing less chance of full blown psychosis for people taking fish oil during their 1st episode of psychosis. The is no downside or side effects from taking fish oil and it is good for heart health. If used early it could be helpful.

They also spoke about the relationship of trauma to the development of psychosis. There is a study called the ACE Study (Adverse Childhood Experience Study). They looked at a comparison to later use of psychiatric services. Trauma has an impact on people and the development of psychiatric disorders. Most people have 1-2 adverse childhood experiences such as divorce, a parent with a mental illness or a parent away for a year or more.  For more information on the ACE Study and the impact on trauma and mental illness go to  www.cdc.gov/ace.

The speaker spoke about the impact of psychiatric medications on 1st episodes of psychosis. Medications often help but not always. They should not be given alone but should be accompanied by family psycho-eduction and therapy. The new NAMI on Campus program is very important. The college years bring on a lot of stress and it is during these years that often disorders such as depression, anxiety and bi-polar are first seen in young adults. The goal is to get young people to learn how to use psychiatric medications for their own selves through education and psychotherapy.

As a side note, someone in the audience raised the question about nicotine and the impact on psychosis. The speaker stated that there has been some subtle cognitive improvement impact from nicotine in those with psychosis but the nicotine is toxic and cigarettes lead to heart disease and death. He stated that NAMI is going to have a free 2 hour peer led webinar to help with quitting the nicotine addiction.

In conclusion, these are the important  ideas I took away from this lecture:

  • The importance of early treatment and identification of psychosis
  • Psychosis is a symptom, not a diagnosis
  • The idea of brain plasticity and the benefits of Cognitive Enhancement Therapy
  • The impact that early trauma can have in serving as an environmental trigger of brain disorders
  • The importance to get the resources that NAMI has to offer out to the young adult community and their families.

Please visit the following websites for information:

http://www.brainfacts.org/about-neuroscience/ask-an-expert/articles/2012/what-is-brain-plasticity

and

http://schizophreniabulletin.oxfordjournals.org/content/25/4/693.full.pdf

and

http://www.nami.org/Template.cfm?Section=Starting_Your_Own_NAMI_Affiliate&Template=/ContentManagement/ContentDisplay.cfm&ContentID=146724

Neitcha Thomsen
Nami Northside Atlanta

DAY THREE: New Research on Borderline Personality Disorder
  • Dr John Oldham, M.D. senior Vice President and Chief of Staff, The Menninger Clinic, and professor and executive vice chair, Menninger Department of Psychiatry and Behavior Sciences, Baylor College of Medicine, Houston, Texas
  • Moderator: Jim Payne, J.D., member, NAMI Board of Directors, Falls Church, VA.
  • Diane Hall, president NEA BPD

The Menninger Clinic has a website that includes a podcast series that covers psycho-educational topics for families:

http://www.menningerclinic.com/education/patient-family-videos-books

Borderline Personality Disorder used to be thought of as a disorder somewhere between psychosis and neurosis. We now know that it is not a psychosis disorder. It is a mood disorder. We talk about BPD as one single thing but really it is made up of a mix of traits and disorders. 84% of clients with Borderline Personality Disorder met criteria for an Axis I disorder. The most common co-occurring disorders are mood disorders, anxiety and substance abuse.

Suicide with these clients is of a high level of concern. Also we have seen a high incidence of sleep disturbance in clients with BPD. They have a significant level of sleep disturbance in both REM and non-REM. There are also alterations in their inflammatory system.

We also see prefrontal disconnection in BPD. An example of this would be in a person with out BPD if you have an impulse you can over ride the impulse. A non BPD person has feelings and emotions emerge and they are registered and then you can regulate them. This does not happen in BPD. It is as if  “the engine is running hot but it gets a double hit because the brakes don’t work”.

Social Baseline Theory:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3269568/

BPD has a moderate degree of heritability of 20-40% which is the same as depression and anxiety disorder.

There are common shared risk factors of BPD and AntiSocial Personality Disorder. We see a disregulation of Opiads. There is an increase in response to negative emotions. This suggests that there is a pain increase capacity of the cortex and it helps to regulate emotions. An example of this is in the cutting behavior that is often seen with persons with BPD. Cutting feels like relief for them. It allows their brain to turn off the relentless emotions. We also see that there is a deficit in Oxytocin which is also known at the trust or attachment hormone in persons with BPD. Oxytocin improves “mind reading” or recognition of emotions on faces. There is a disturbed attachment style.

There are many treatments that have been studied for the treatment of BPD:

MBT, DBT, SBT, TFT, STEPPS and GPM. The core treatment has been Psychotherapy and medications.

This is adjunctive and symptom targeted. It has been noted that 3 month inpatient DBT treatment shows significant improvement in BPD. It should also be noted that the improvements persisted over 21 months after treatment.

CLPS Study by NIMHA:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3289284/

This was the Collaborative Longitudinal Personality Disorders Study. 85% of patients showed remission in 10 years with 2 or less symptoms but their level of functioning did not improve as quickly.

In conclusion, think of personality disorders as an extreme on a range of personality traits. It was also interesting to me that Dr. Oldham spoke of BPD as a mood disorder.  There was a new proposed DSM-V diagnostic model that was proposed and it was included in the DSM-V as an alternative model.

There is a new BPD journal that is available at www.bpded.com . Check it out along with the podcasts at

www.menningerclinic.com/education/patient-family-videos-books

Neitcha Thomsen
Nami Northside Atlanta

DAY THREE: Special Presentation: Neuroscience Supports The Recovery Model
  • Jill Bolte Taylor, Ph.D., author, My Stroke of Insight, and spokesperson, Harvard Brain tissue Resource Center, Bloomington, Ind.
  • Moderator: Clarise Raichel, M.Ed., member, NAMI Board of Directors, Lake Charles, La.

Over the last few years, neuroscientists have learned that our brains are capable of growing some neurons (neurogenesis) and that our brain cells are capable of rearranging which ones they are communicating with (neuroplasticity). As a result, we now understand that the brain is in a constant state of growth and adaptation and that when we work with the brain–rather than against it–it is often capable of considerable recovery from trauma. Although mental illness is not defined as a trauma to the brain, neurons are neurons, and when we pay attention to their needs and we set them up for success, the brain will function at its highest capacity. When we treat people as though they will recover, they tend to recover more than if we treat them as though they will not recover, and what we now understand about the brain supports the recovery model.

Dr Taylor is a very energetic and engaging speaker who made the information about neurons, neuroplasticity and how the brain works much more understandable to the average person. She has a brother diagnosed with schizophrenia. She is a neuroanatomist, a brain scientist who studies the anatomy of the brain. Her training is in the postmortem investigation of the human brain as it relates to schizophrenia and the severe mental illnesses. She wrote a book called My Stroke of Insight after suffering an aneurism.

You can watch one of her videos at Ted Talk:

http://www.ted.com/talks/jill_bolte_taylor_s_powerful_stroke_of_insight.html

She shared so much information in such a fast-past energetic manner that it was difficult to take sufficient notes, but I will try to summarize what I learned from her presentation.

The GABA cell is the powerhouse of the brain. People with schizophrenia have too much coming in. Everything is processed through something called the Amygdala. The Amygdala’s job is to always be checking “Am I  safe?”  If it concludes “yes”, then we have the ability to learn and memorize. We are feeling creatures who think. Mental illness is all about what is going on in the limbic system.

Scientists know we can grow new cells in response to any type of trauma. This is called neurogenesis. We also have what is called neuroplasticity which is the ability to rearrange functions in the brain. Everything we believed just a few years ago about the brain has changed.

Scientist are also looking at Mindfulness and our ability to pick and choose our thoughts. It can change the underlying anatomy of the brain. This is demonstrated by the saying “Fake it till you make it”. New medications now integrate with techniques such as acupuncture, massage therapy and more.

She spoke about the lack of brains for research. Twenty years ago they were able to get 3 brains a year for research. When you sign up as an organ donor this does not include the donation of your brain.

The Harvard Psychiatric Collection Brain Bank is trying to make people aware of the need for brain donors. If you are interested in learning more about this go to:

http://www.brainbank.mclean.org/Define.html

She was an amazing speaker and I would encourage you to search out her on-line videos and to read her book. You can learn more about her and her work at:

http://drjilltaylor.com/

Dr. Taylor also expressed her devotion and love of the NAMI organization and families.

When she had her stroke, her brother had moved to California and was symptomatic and not doing well. Her mother was torn between going to care for him and caring for Jill. Her mom contacted NAMI and they contacted an affiliate where her brother was. Volunteers from the affiliate located her brother and took care of getting him to the resources and treatment he needed so her mother could be with her. She said she can never fully express how NAMI is like a family and how the members are there for you in crisis….even when they don’t really know you.

Neitcha Thomsen
NAMI Northside Atlanta

From the Treatment Advocacy Center, an amazing FREE app for your smartphone to help families during a crisis situation.

View the convention’s Full Program.

Return to blog of DAY ONE.

NAMI 2013 National Convention Site.

Print Friendly, PDF & Email