BPD and ED - a view from the trenches by Evelyn Sharnov in Psychology Today

Warning:  as I write below, this links to a very powerful and potentially triggering article.  The thing is, it's real.

Powerful and very real is this story - In Extremis Part One - by Evelyn Sharnov that was just posted on  the Psychology Today website blog.

Here's the link if the above highlighted title link doesn't work.
http://www.psychologytoday.com/blog/notes-the-frontline/201206/in-extremis-part-one

I want to highlight two very important points:

First, that she acknowledges what so many baffled parents have struggled with:

"A borderline personality disorder sometimes forms in response to triggers like abuse or abandonment, real or perceived—but not always. The origins of the disorder are a mystery at its core."

And, second, that this illness is treatable and must be addressed as soon as possible for the person affected.

An excellent book just out is by Francis Mark Mondimore, M.D. and Patrick Kelly, M.D. titled Borderline Personality Disorder:  New Reasons for Hope (A Johns Hopkins Press Health Book, 2011).

I reviewed this extremely informative book here.

I know it's hard to hang in there with someone who is fighting this what I believe at its basis is a  biological brain disorder.  And, as illustrated in the story, Annie also has an eating disorder - a common combination.  But as Laura Collins relates in her talk  - powerful with terrific visuals to accompany the text - she presented at the International Conference on Eating Disorders in Austin this past May 2012, we must not forget that, again, these are biologically based illnesses of the brain and not willful behaviors and for that reason the people who are overwhelmed by these illnesses need our help, not our abandonment nor our disdain.

NBC News segments - Boys and Men Get Eating Disorders, too

These links will introduce the idea that boys and men get eating disorders, too.

http://video.msnbc.msn.com/nightly-news/46480643/#46480643

http://video.msnbc.msn.com/nightly-news/46480643/#46495231

http://video.msnbc.msn.com/nightly-news/46480643/#46489113
 

Eating disorders do not discriminate.  The eating disorder is like a deadly virus, intent on overwhelming and killing anyone it infects.  An eating disorder, however, is a serious mental illness - a biological brain disorder -  and is, in fact, the deadliest of all mental illnesses.

If you suspect that your son or daughter has an eating disorder, run - do not walk - to your family doctor.  Take this booklet published by the Academy of Eating Disorders with you. You can download it and print it.  Insist that the examination of your child include what is written here.

If the tentative diagnosis is an eating disorder, know that this is a medical emergency requiring emergency attention.  If your family doctor does not know how to treat it, then find one who does. 

Too much dopamine? not enough oxytocin? SSRI's? Autism Spectrum?

In earlier posts, after a detailed discussion with Martha Fankhauser, a pharmacologist whose interest extends to working with local behavioral health providers, I wrote about the balance of SSRI's and dopamine, and mentioned the problems that occur when dopamine is in excess.  A simple explanation along with symptoms can be found at this site, too.     I  also thought out loud about the significance of oxytocin.

These neurotransmitters and this hormone are on my mind again today because I just read a fascinating article in today's New York Times (December 26, 2011) titled "Navigating Love and Autism" in which the young man mentioned, who has been diagnosed with a form of autism (others describe the symptoms as being along the autism spectrum) known as Asperger syndrome, is also thinking about these things.

The article is an insightful piece, looking at the problems that people -- children, young adults, and adults -- must deal with.  The article is also illuminating for those who do not understand the syndrome or haven't needed to not only because it reviews articulately the behaviors that many find rude or hard to understand but also opens doors of possibility for those reading it to recognize behaviors of a family member or client (as in the case of a psychologist or psychiatrist).

I am among many who believe that many of the behaviors we see connected with the autism syndrome, eating disorders, "personality disorders"  such as borderline personality disorder (which research is showing is also a disorder of the brain rather than of the personality) and other brain disorders such as schizophrenia  are all linked in the sense that they rise from imbalances in neurochemicals or in the endocrine system.  Until the cause is found that might be treated, the current approach is to treat with meds.  Finding the right one, or multiples, and the balancing of those is critical.  So is teaching those with these disorders to learn how to cope and therefore develop new and improved ways of interacting with  and responding to their environment.  

A significant interest of the young man written about -- Jack Robison -- is on the biochemical/neurological issues that are in the background of his syndrome and he has been investigating those.  I hope he and others continue the investigation.

Has the Tipping Point Been Reached? - Drs. Bulik and Ravin

This week two different internet news items caught my attention.

The first was a 56-minute presentation by Dr. Cynthia Bulik of the University of North Carolina at Chapel Hill at a Stockholm Psychiatry Lecture held at Karolinska Institutet, November 15, 2011.  The title of her talk is The Complex Dance of Genes and Environment in Eating Disorders and can be found here, thanks to You Tube!  Some of the slides she presents are graphic and can be triggering or very upsetting to those with either anorexia or bulimia.  They were important, I believe, for the thrust of her talk.  Dr. Bulik's lecture is hugely important not only for the scientific information she presents  but also because she has taken a step further and looked at the potential for possibly preventing the occurrence of eating disorders in the offspring of those with either eating disorders or the family propensity for those illnesses.  Those of us who attended the F.E.A.S.T. conference in early November in Alexandria, Virginia heard some of her points; this lecture is far more extensive. 

I was also excited to hear her state there is a genetic consortium of scientists to further the study of anorexia nervosa known as GCAN.  The website that is part of the Department of Psychiatry Eating Disorders Program at UNC Chapel Hill states, 

Since 2007, the University of North Carolina Eating Disorders Program has led a world effort to unite clinicians and researchers around the world in an effort to identify genes that may influence risk for eating disorders. This has resulted in the Genetic Consortium for Anorexia Nervosa (GCAN) which currently consists of researchers and clinicians from 16 countries around the world. Together with researcher from Kings College London, the UNC program has been honored to receive a grant from the Wellcome Trust (WTCCC3) to conduct genomewide association on over 4000 DNA samples from individuals with anorexia nervosa. All members of the consortium are gathering information about eating disorders course and genetic material (DNA) from any individual who currently has or has had an eating disorder in the past. This world-wide effort is inviting every person with current or past anorexia nervosa to take the time to roll up their sleeves and help us figure out the cause of eating disorders.

We are currently gathering information and genetic material (DNA from a blood sample) from women who have had anorexia nervosa at any time in their life. Information from this study will advance our understanding of the causes of anorexia nervosa and further our ability to develop more effective treatments and prevention strategies.
If you are female and have had anorexia nervosa at any time in your life, you are invited to participate in this study. Participation only takes 30 minutes and includes a blood draw.

Call Jessica Baker today at 919-966-1217 or her at jessica_baker@med.unc.edu if you are interested in donating your blood to help us unlock the genetic code of eating disorders.

Note that they are looking for participants for this study.   

The word consortium is what especially caught my attention because this concept - consortium - is spreading throughout the scientific world to bring research results forward faster, to obtain grants and donations to expedite that research, and to collect meaningful data that is understandable across fields.

So is consensus science.

The second item was Dr. Sarah Ravin's recent post titled, "Active Ingredients"  Dr. Ravin's post is extraordinary because she not only takes a firm, public stand on the approach to be taken when treating those with eating disorders, she also provides a flow chart for how one must treat a person with an eating disorder.  This post is important for scientific researchers, psychiatrists, medical doctors, therapists, nutritionists and families.  I would call it a "recommendation for best practices in the treatment of an eating disorder."

Her introduction is so very important -

To the patient’s detriment, many clinicians do not add the right ingredients at the right times in the right doses. For example, many individual therapy approaches focus initially on helping the patient develop insight and motivation to recover. Full nutrition is not required, or even encouraged, until the patient has lost a significant amount of weight. 

Many clinicians are simply using the wrong recipe.

Dr. Ravin goes on to list the essentials at each step as well as the issues that can wait.  The flow chart isn't for a month or even three months (the typical length of time paid for by insurance companies in this country, the latter figure of three months rather unusual).  Her chart covers a period of 12-18 months (!) and in closing  incorporates a list of must haves  before a parent sends a young person off to college or to live independently.  

Dr. Ravin highlights the importance of investigating the possibility of other factors such as brain disorders like anxiety, OCD, and depression and their treatment, something I've been pushing for for a long time in comments on Something Fishy and other websites because of my loved one's experience.  Too often families and therapists think a person will be "well" once they are re-nourished and in some cases that is true or seems to be true.  The symptoms seem to disappear.  Yet, the propensity is still there.  In many cases  this myth of "only an eating disorder" must be dispelled on behalf of those who fall back into the abyss and cannot seem to climb out because these and other illnesses have not been diagnosed, have not been treated, and the individuals have not been provided with the tools (also mentioned in Dr. Ravin's chart) to quell their anxiety or to "regulate emotions and tolerate distress."  This is where CBT (Cognitive Behavioral Therapy) and DBT (Dialectical Behavioral Therapy)  and other modalities are introduced.

I was so thrilled to see and read  Dr. Ravin's post as well as watch Dr. Bulik.  I know we've reached the tipping point.  Now with films like Someday Melissa and Miss Representation getting nationwide attention (the latter has already been screened here in Tucson by The Arizona List) and organizations like F.E.A.S.T., NEDA and its affiliates, and NAMI along with the attention of the National Institutes of Health's National Institute of Mental Health (thank you Dr. Insel!) we need to keep raising our voices and spreading the word.

"Mental Illness Defined as Disruption in Neural Circuits" - Dr. Thomas Insel

Dr. Thomas Insel, director of the National Institutes of Mental Health, keeps a blog.  

On August 12, 2011 he wrote an article with the above title and I've linked it here.  I've also linked his blog on my blog site and now intend to review his previous posts.  I'm so excited to have found another important source thanks to one of the F.E.A.S.T. folks!!!

What is ADHD?  What is schizophrenia? What is depression?  OCD?  BPD?  Bipolar Disorder?  Can these be prevented?  can these brain disorders be treated before symptoms arise?  Can the brain's cortex be kept on track or put back on track to develop normally?  Other questions lurk excitedly in the background.

Dr. Insel closes by writing, "While the neuroscience discoveries are coming fast and furious, one thing we can say already is that earlier notions of mental disorders as chemical imbalances or as social constructs are beginning to look antiquated.  Much of what we are learning about the neural basis of mental illness is not yet ready for the clinic, but there can be little doubt that clinical neuroscience will soon be helping people with mental disorders to recover."

Is your child leaving for college?

Several of us who have posted regularly to the parent's bulletin board on Something Fishy advocate for the delay of going away from home to college when a soon to be adult child is in the throes of an eating disorder.

Dr. Sarah Ravin wrote an important piece about this on her blog on August 25, 2011.

Http://www.blog.drsarahravin.com

Dr. Ravin's blog is a terrific resource!

Walking in Lock Step - The Parent Trap

I'm reading Bitter Pills: Inside the Hazardous World of Legal Drugs by Stephen Fried.  Fried turned to this subject because his wife, Diane, was prescribed and took one pill of a new [at that time] quinolone called Floxin.  I repeat, one pill.  Quinolones can get past the blood brain barrier, and it did.  Diane's response included the development of bipolar disorder.  Her brain was biologically primed through genetics.  Others who took this drug experienced terrible side effects, as well.  Those who were affected created the expression that they had been "floxed."

Fried went on to investigate just how the FDA worked (and still does) to screen drugs coming to market.  He also delves into the workings of the drug industry and its relationship with the medical professionals who prescribe the drugs as well as the process by which the drug makers do an end run to potential patients and therefore users (something that has continued at much higher levels these days, especially with medications for brain disorders) using, for example, advertisements in newspapers and magazines.

I bring this up because Stephen walked the walk (lived the walk) that so many of us do who care for loved ones with an eating disorder.  I know this following passage will sound familiar and perhaps it will help loved ones understand the process in which they've become entwined.  More importantly, I think this passage illustrates why it's critically important for a family to work with a therapist not only to learn how to deal with the illness but also to learn how to get out of the way of their loved one's efforts to get and stay on the path to recovery as fully functioning as possible.

From page 106:

"I realized it was very easy for me to shift into "emergency mode," but terribly difficult to shift out.  How did you treat a chronic illness if not by declaring a permanent emergency?  I didn't know.  In my family [many of his family members were struggling with illnesses or death of a family member at this time] we just left the siren running and adjusted to the noise.  We're basically loud people: we never really liked the quiet much anyway....

"It seemed that Diane and I were experiencing what my friend Barry Jacobs - a clinical psychologist specializing in medical family therapy with people dealing with traumatic or chronic illnesses - has called the 'locked embrace.'  He describes it as 'a rigid pattern of interaction in which the patient is stuck in an underfunctioning role as other family members overfunction in an effort to protect [her].  It allows the family as a whole to avoid difficult feelings such as anger or overwhelming sadness, but can prevent the patient from recovering to the maximum extent possible.'  I understood that Barry was describing a sort of loving dysfunction, born more of fear than hope, that should be treated with psychotherapy...."

This is a shocking, not easy to read book that is well written and chock full of information.  I am hoping to find a more recent book that will continue this conversation.  The book includes a  chapter titled "Psychopharm" because of the brain disorder his wife developed and what he learned about this aspect of pharmacology while working with folks from NAMI, for example.

As I said in my last post, I am finding myself inadvertently drawn into literature I never dreamed I'd be reading six years ago.  I've always been interested in the medical field and now more so in the workings of the brain and medications.   Fascinating.

Reward Seeking Behaviors: Part II

Shortly after I blogged about reward seeking behaviors, Dr. James Lock published a study linking bulimia to impulse control.  He also is beginning a study of bulimia in adolescents and is recruiting patients to participate:

I think this published study is hugely important because one of the symptoms of a person diagnosed with what's [incorrectly, in my opinion] called Borderline Personality Disorder is also faulty impulse control and emotional disregulation.  Twenty-five to 28 percent of those diagnosed with BPD are also battling eating disorders.  Faulty brain function appears to be involved.

So back to my earlier post re Ameliorating Reward Seeking Behavior.

Hopefully more research will uncover ways for a person to overcome this behavior that so undermines one's ability to live well.  

You Don't Know What You Don't Know

Let me repeat that:  You don't know what you don't know.

The first time I heard someone say this, I was attending a class offered by the National Alliance on Mental Illness, otherwise known as NAMI.  The local Tucson chapter is NAMISA.   The class, Family to Family, is still offered and I will be forever grateful to a friend of mine who not only told me about NAMI but also about this class.  I gained a tremendous amount of knowledge and also insight not only about the workings of the brain but also an inkling of what it must be like to have illnesses like OCD and Schizophrenia (through intensive class exercises) and more importantly resources in Tucson.

The point is, we aren't omniscient.  I know many of us whose children/loved ones are embroiled in an eating disorder or addiction or have been diagnosed with another brain disorder wish we had seen this coming, or understood what the early signs were, or somehow wish we could turn back the clock with the knowledge we have now.  But, we can't.

My goal and the goal I encourage others to have is to move forward from now, become the best advocate you can be for your loved one by learning as much as you can to change his/her ship's direction, and help your loved one get onto the path to recovery.  Spinning your wheels about could have's and should have's is a tremendous waste of energy.

You don't know what you don't know.

Dr. Marsha Linehan reveals her own battle with Borderline Personality Disorder

A friend provided a link to this article that appeared in the New York Times last week in which Dr. Marsha Linehan, who developed the therapeutic technique Dialectical Behavioral Therapy, revealed that she, too, has battled Borderline Personality Disorder.

I particularly like this site - DBT Self-Help.

This piece is relevant for those with eating disorders for two reasons right off the top:  first, many who develop an eating disorder have a co-existing brain disorder diagnosis that also needs to be treated; and second, at least 25 percent of those with BPD also have an eating disorder.  I've blogged about BPD elsewhere here.

There are many parents who have spoken up about this disease and who firmly believe, like I do, that this is not a personality disorder but rather a brain disorder of biological origins.  As more and more research continues about the brain, I am convinced that this belief will gain more traction.

In the meantime, I'm reading a fascinating book by David Eagleman who is a neuroscientist at Baylor University.  The book - Incognito - is a must-read for those who are following the progress of understanding the brain.  I'll be writing something about the book once I'm finished with it.  So many dog-eared pages!  I am now in the section titled "Knowing Thyself."  The section on neurotransmitters and especially his thoughts on free will as well as free won't (applicable to the discussion about Borderline Personality Disorder) all add to a better understanding of the workings of the brain and ultimately who we are.

Sea Change Needed - All illnesses, even those resulting in brain disordered behavior like schizophrenia, OCD, eating disorders, depression, bipolar, etc. are biological

I follow the activities of the Eating Disorder Coalition for Research, Policy and Action whose mission is to increase awareness, educate policymakers, and promote understanding about the disabling and life-threatening effects of eating disorders.   Its members are advocating for passage of The Freed Act that would fund much needed research to better understand eating disorders and provides solutions for prevention, education, screening, diagnosis and treatment. Among other things, the legislation would fund grants to conduct research on treatment efficacy, train health professionals and school personnel to identify and respond to eating disorders, and build on existing reform efforts to ensure that treatment is available to those who need it.

In addition, since my husband now holds a position with the Critical Path Institute, I'm hearing about different initiatives across the country having to do with illnesses/conditions like Parkinson's Disease and Alzheimer's Disease that are categorized as physical ailments and therefore eligible for health insurance coverage that is not equitably available for those with brain disorders/mental illness.

A couple of days ago he told me about the International Mental Health Research Organization  founded by Garen Staglin that is committed to funding research and raising awareness to help people with brain disorders, and to finding cures for schizophrenia, depression and bipolar disorder within a generation.

This news is quite exciting as is the incredibly important initiative promoted by Patrick Kennedy called One Mind.  Kennedy was joined by Vice President Biden, Martin Sheen, other members of the Kennedy Family  at the One Mind Research Conference last month where Senator Biden spoke to 400 philanthropists, policy makers, scientists, and other academics at the John F. Kennedy Presidential Library and Museum during a fund-raising luncheon that launched a 10-year national plan to advance neuroscience research.

Co-chaired by Kennedy, this initiative has proposed a Ten Year Plan for Neuroscience:  From Molecules to Brain Health .  There are two immediate goals of this initiative:

to create the One Mind Brain Database, drawing together existing knowledge resources to offer a globally accessible online platform for sharing data on neuroscience discoveries, and to facilitate collaborative work.

 to complete the formation of a public-private partnership with government, academia, advocacy, and the pharmaceutical industry to allow for the acceleration of science to cures by sharing of “pre-competitive” intellectual property and to accelerate translational treatments and cures.

I've been mulling all of this over for the last few days.  Earlier this week, when focusing strictly on eating disorders, I began to speak about the importance of the need for a different perspective.  Why?  Because I believe that we are defeating ourselves and undermining the needs of people with brain disorders by continuing to place emphasis on a separate category titled mental illness for diseases like eating disorders, schizophrenia, obsessive-compulsive disorder, depression, and bipolar disorder rather than calling for the unification of all bodily health issues.

What would be the benefit of this?  For starters, there wouldn't be the current second class status of brain disorders/mental health care as defined by our ubiquitous Health Insurance Industry.  And, more to the point, consequently sufficient treatment - both in quality and time - would be devoted to treatment for these disorders.

Speaking just about eating disorders now, I continue to be dismayed by what is happening within the insurance industry since the passage of legislation championed by deceased Senator Edward Kennedy, specifically the Mental Health Parity Act passed into law in 2007.  Too many insurance companies are seeking ways to get out of paying for necessary treatment.  Thirty days and even ninety days just isn't long enough.  The first step is to normalize nutrition.  This can take at least 90 days and until someone with anorexia, for example, is weight-restored other forms of therapy as well as medications simply won't work. With the unification of all bodily health issues, this bifurcation would stop.  Treatment would be longer and therefore more effective.

Our country and our society must step up and help those with brain disorders. It's time that we all quit calling illnesses like eating disorders (5-HT disorders), depression, OCD, bipolar disorders, etc. mental illnesses. Those who have these illnesses all _do_ exhibit brain disordered behavior but they are all biologically based through genetic makeup.  It's time for a sea change.

Can Eating Disorders be Prevented?

I am reading a fascinating book. The title is terrific: The Emperor of All Maladies. The book is written by Siddhartha Mukherjee and was published by Scribner in 2010. I was listening to NPR one day, heard about it, and then listened to my own therapist tell me what a great book it is. So, I bought it.

Why do I write about it here? Because the book is a biography of cancer and about the very long journey the medical/science professions have endured to find a way to stop it or cure it or at least put it in remission.

I was recently reminded that whatever many of us parents are doing to help our loved one conquer ED, we are not using a cure necessarily, but rather a method. So, for example, I do not believe anyone has called Maudsley a "cure" but rather a "method." One goes "into residential treatment."   Eating disorders are complicated, not simple.

Keeping the word "method" in mind, and knowing that right now the very first step in treatment of an ED must be the cessation of the behavior that is driving the anorexia, the bulimia, the binge eating, EDNOS, exercising, etc, plus excellent nutrition,  there's still that elusive word "prevention" out there in the world of those researching these illnesses.

And preventive medicine in this country at least has taken a very long time to become acceptable.

I am about a little more than a third of my way through this terrifically written and engaging book. Drugs are being discussed, chemotherapy is on the rise, things like radical mastectomies are in decline, receptors have been found, and right now this reader has been taken into a philosophical discussion about mortality.

Mortality.... Here's a quote from the book:

 

"The only intervention ever known to reduce the aggregate mortality of a disease - any disease - at a population level was prevention."

And so far - understandably so - we parents are immersed in methods of treatment rather than of prevention in order to save our daughter's/son's life.

Meanwhile, I continue to be amazed at the numbers of teens who are being diagnosed with a brain disorder (I recently read 1 in 6). I continue to be amazed at the number of teens and younger children being diagnosed with the brain disorder anxiety.

Surely there is a link somewhere in here.  A recent study highlighted the possibility.

The brain of a growing individual keeps changing well into their twenties. So many things can go "right"; so many things can go "off path." Genetics plays an enormous part. Certain areas of the brain mature even more slowly than others. Nutrition is paramount. So is learning behaviors -- patterns if you will --  that keep one on the path to a productive life.

Suppose we all made a concerted effort to educate parents to take their children to the doctor for an assessment of their mental health as well as their physical health. "Teen Screen" is a start.

Perhaps this is one step towards prevention. There are others, too, like paying attention to family dynamics and communication for starters; like taking your child to the doctor when the child is having a difficult time coping. There's even talk now of being able to identify someone who might develop schizophrenia and treat them early enough so that potentially they don't go on to develop the disease.

Imagine if we could do that for those who are vulnerable to eating disorders??   I believe it's possible.

Thoughts about running and being....healthy

Reading a post by Carrie on her Ed Bites blog about mind vs body and then seeing a graphic portrait of a skeleton running on a treadmill published by CBS the other day (I am not going to link to it as I was shocked by it), reminded me of all the times one of my adult children admonished me for continuing to buy my loved one a pair of running shoes as one present for Christmas and another for birthday. I just didn't "get it."

My epiphany on this issue came one or two months ago when I realized that I was an enabler by providing the shoes.  After all, my loved one loves to run and go on long walk-abouts, as we call them.  I figured (incorrectly; see most recent post) that my loved one was running for the exact reasons that I love to run and now walk.  Actually, I am sure that part of her does for the very reasons I do -- incorporating what can be a healthy habit into one's day to get some fresh air and sunshine as well as to get the heart going, the lungs expanding, the hormonal systems moving, etc.

But running came into our lives differently. 

As I've written here on my blog, my parents always encouraged sports and outdoor activities.  We lived overseas in the tropics/subtropics for most of my growing up so outdoor sports happened year round.  Sports was a part of my life and part of my during school hours life, too.  I raised my children the same way.  Living in Tucson with its wonderful year round weather helps that. 

But I did not "discover" long distance running until I saw a friend of mine running around the neighborhood and asked her a few questions about it.  I learned that it was an activity I could pursue early in the morning before my children woke up and needed to get ready for school.  I came to love it very quickly for reasons I've also written about.  But, for me, most importantly I wanted to keep doing it and I realized that to do so, I needed to be smart about it.  Having a medical background (nursing student) and a keen interest in physiology helped me realize I needed to eat well.  I also had just begun my own recovery from bulimia and soon learned that putting a few more pounds on did wonders for me in terms of strength and in terms of fighting my frequent bouts with bronchitis.  In fact, I learned as time went on that as soon as I went under what was still a very healthy weight for me (this happened when I was stressed), I'd get sick with bronchitis or a cold.  It was my body's warning system going into action and I heeded it.  My doctor was very happy about the change, too, and encouraged me to aim for a weight that he felt was even healthier.  I did that. And, I felt even better.

My loved one, however, was introduced to running while very young - nine years old.  Running became a part of her life which I thought was a good thing.  However, as she reached her mid-teens, exercise became one of the ways she dealt with anxiety and later assisted her along into anorexia.  She continues to use it as a tool to keep herself there or get herself back there.  She also incorporated what we called the walk-abouts.  These were very long walks around town to avoid binging and purging and other behaviors.

Each time she has been released from a residential facility or hospital, she has returned to running/walking even when her electrolytes were horribly skewed and/or her weight was low enough that she reported people would yell out their car window at her to "gain some weight."  She would come home very upset by these remarks yet could not connect the dots to see why others were reacting to her physical looks.  She just didn't see it. 

Now I have gotten beyond my denial to understand that she is incapable, at this point, of using running for just a healthy purpose.  She still craves it.  One of her hurdles will be to understand the difference.  My role  is to set a boundary by not purchasing her running shoes and by standing firm with her team and asking her to not run and not walk long distances until she figures all of this out.

As a former runner (I walk now as I have arthritis in my neck), I do remember at times getting injured with tendonitis like symptoms and experiencing what is called "withdrawal" because, let's face it, running and or walking/hiking for those who love it, feels good.  I get out, away from cares for awhile, I can think things through without being disturbed by the phone, or I can just simply enjoy the sounds of nature. 

For those who find that exercise can undermine them, and are cognizant of it (like Carrie), stopping for awhile is necessary.

Helping Your Loved One Manage Change

In an earlier post about Borderline Personality Disorder (BPD), I tucked away a link to some very important guidelines that are especially helpful to families whose loved one has been diagnosed with BPD but also, I think, to any family that is trying to cope with the frightening development of an eating disorder or other brain disorder in their midst and wanting to help their loved one get well.   Note that these guidelines were originally developed to assist the family in the treatment of schizophrenia and many of these points are echoed in Dr. Xavier Amador's book, I Am Not Sick, I Don't Need Help.

These Guidelines were written by John G. Gunderson, M.D. and Cynthia Berkowitz, M.D. for the Multiple Family Group Program at McLean Hospital in Massachusetts.  The guidelines were published by The New England Personality Disorder Association and can be found at this link.  

The document indicates that the "Guidelines were adapted from a chapter by the authors,  "Family Psychoeducation and Multi-Family Groups in the Treatment of Schizophrenia," McFarlane A. and Dunne B., eds, Directions in Psychiatry 11:20:1991. "   Note that you can print these by clicking on specific options on your screen on the first page of the document.  This yields an easy to read print size and an 11-page terrific document.

The Table of Contents reveals five themes and 15 sections:

"Goals: Go Slowly

1) Change is Difficult

2) Lower Expectations

Family Environment

3) Keep things Cool and Calm

4) Maintain Family Routines

5) Find Time to Talk

Managing Crises (pay attention but stay calm)

6) Don't Get Defensive

7) Self-Destructive Acts...Require Attention

8) Listen

Addressing Problems (Collaborate and Be Consistent)

 9) Three "Musts" for Solving Family Problems

10) Family Members: Act in Concert

11) Communications with Therapist/Doctor

Limit Setting (Be Direct but Careful)

12) Set Limits...Limits of Your Tolerance

13) Don't Protect from Natural Consequences

14) Don't tolerate Abusive Treatment

15) Threats and Ultimatums"

All this on eleven pages!

Again, these themes and this document would seem useful for any family, particularly one with teens and especially for one with a family member diagnosed with a brain disorder/mental illness.

As Harriet Brown and others write of their loved one's recovery(ies) and the process of getting there, there are phases during which behaviors become totally unrecognizable and even frightening.  Habits die hard.  The eating disordered part of the personality becomes terribly threatened and proceeds to try to sabotage the entire process.  My loved one is at this place.   She needs to walk through it to get to the other side; something she has been unable to do during previous treatments.  Hopefully this time will be different.   These guidelines are an effective reminder.

Brain Disorders: Resources to Help Parents, Other Family members, Friends and Loved Ones

After writing the previous post, I decided to illustrate what resources can be made available when an organization -- in this case NEDA, the National Eating Disorders Association -- makes publications free and available to the public through a website.

There are three publications currently available and up-to-date (as of summer 2010) for family members and loved ones, for coaches/athletic trainers, and for educators.

If you'll scroll through, for example, the Parent's Toolkit, you will find references to many resources.  The same goes for educators and for coaches/trainers.  For first time visitors, just click on the highlighted words to go directly to the publication(s).

Imagine if these publications could be made available to all the elementary, junior, senior high, and college/universities here in Tucson.  To counseling offices, to athletic departments, to hospitals.

It's not that difficult.  I did it by downloading copies for the earlier mentioned terrific mental health provider team and for the hospitals involved.  I know these were used.   Others can do this, too!

Similar manuals could be constructed for those who encounter people with mental illness/brain disorders.  Making them free and available to the public via websites (therefore in the library, too), would help a lot.  The Family to Family course I attended through NAMI provided us with an enormous notebook of resources and educational materials.  Perhaps this could be synthesized in some areas and expanded in others, similar to the NEDA parent publication.

The Academy for Eating Disorders has created a flyer to be provided to doctors.  NEDA has found that the first source of information for parents of those with eating disorders is the family physician.  Dental offices can use this brochure, too, since dentists often can be the first to notice the ravages of eating disorders.  Currently the information can be found in the AED Report 2012, 2nd Edition, Eating Disorders - Critical Points for Early Recognition and Medical Risk Management in the Care of Individuals with Eating Disorders.

The same could be done for those who encounter people with signs of brain disorders/mental illness.  I have not researched this thoroughly and I do know that the local chapter of NAMI has brochures that walk people through a variety of mental illness as well as what to do.

When first confronted with illness, as mentioned above, most people turn to their family doctor.  I believe medical training must include a strong component on mental illness/brain disorders and on eating disorders.  I know this is beyond the scope of the forum, but it must be done.

In closing, one of the best resources in Tucson in my experience, other than NAMI,  is SAMHC - the Southern Arizona Mental Health Corporation.  I think it might be useful to include someone from SAMHC on the panel.

Addressing Mental Illness (including Eating Disorders which are brain disorders) in Tucson - what needs to change

I was published today.  Not a momentous occasion justifying champagne or anything like that since the item was a Letter to the Editor of the local paper.  But exciting just the same because I felt strongly about an item and was moved (literally) to go to my computer immediately and write a response to an editorial that announced an exciting event titled,  Time Has Come for Complete Talk on Mental Illness.

The event is a forum to specifically discuss "A Delicate Balance: Creating a better, post-January 8 system to protect the public and help the mentally ill" and is scheduled to be held on the afternoon of April 27 and sponsored by the Arizona Daily Star (our newspaper) with the Schorr Family.  The keynote speaker will be Dr. Thomas Insel who is the director of the National Institute of Mental Health.  The goal is to talk about serious crime and mental illness but beyond that, and an issue near and dear to my heart, is a discussion of "...whether or not Tucson has the tools, resources and system to help the seriously mentall ill and are they adequate.  If not, what changes are needed?"

Okay, let's go back a bit.  The forum is going to be held on the afternoon of a weekday. 

The more of the editorial I read, the more excited and at the same time dismayed I became because an hour will be spent following the panel discussion for Q&A by the public.  And that seemed untenable to me given the time of day this will be held.  So I wrote a letter.  (Scroll down until you see a letter about a forum.)

My concern is that few people who are truly affected by the tools, resources and system (or actually the paucity of the same) would be able to attend since they'll undoubtedly be working to try to make ends meet.

And, their voices need to be heard.

Why do I know this?  Because I attended a wonderful NAMI Family to Family educational series four years ago and learned so much not only about mental illness/brain disorders but also what to do and how to access the tools, resources and system here.  The knowledge I gained was amazing and the frustration I heard from other parents who attended was amazing, too.  And, I know not too much has changed.  If anything, because of the State of Arizona cutbacks, the situation is even worse because many people are now taking generics of medications that are critical for their state of mental health.  Often, these generics aren't the same.  I learned this, too, because my doctor explained that the drug companies that make the generics have the leeway of being anywhere between 85 percent and 125 percent of accuracy in the amount of the drug needed per pill.  Funding has been cut to the agencies that provide services, as well.

The above was one reason.  Reason two occurred later that year when of necessity I began to live in my car (so it seemed) for hours each day taking a person to therapy sessions, to meetings with a psychiatrist, to group sessions, to medical doctor appointment, to labs .... etc.  A chunk of many days was also spent in the waiting room of one of the mental health providers here learning, while I waited, about others' experiences.  There were times when I could have cried.  So many times, people would come to the facility having had to take at least two buses to get there, only to arrive later than their appointment was scheduled and told to reschedule.  Family members and/or friends would take precious time off to get their family member to the facility to avoid missing an appointment.  Others, because of their mental illness, would become confused and lacking an advocate would forget what it was they were to do next or forgot to have their prescription renewed and had to wait for an appointment to get more.  Sometimes they need to wait until the medication is approved by the carrier.  What then?  What about withdrawal symptoms from missed doses?  Some people who came in were belligerent and upset others who were waiting their turn.  I witnessed so much.

I also lived the frustration and sadness of trying to help navigate the system only to see someone I love fall through the cracks and almost die -- at least four times -- because no one was keeping tabs or because eating disorders are still totally misunderstood by many or because I did not have the right to learn of missed appointments (HIPAA) and no one from the agency followed up.

Thanks to my NAMI class I learned who to call and where to go.  I was present at meetings whenever I could be and was allowed to be and took voluminous notes.  I still am and still do.  I worry about those who do not have advocates.  I wonder about those who show up at emergency rooms and are thrown out because they are disruptive when in fact they desperately need help (I know this happens; I saw it happen).  I know there are hospitals here that simply do not understand eating disorders -- for you parents, can you imagine sitting in a locked down area in the ER and having a doctor ask a person with an ED about their "regularity", hearing them say they are constipated, and then hearing the doctor offer a laxative!!!??  or watching as nurses administer a large dose of a medication that was contraindicated only to send a person into an extreme panic attack that culminated in an escape from the ER with an IV still in the arm?  Can you imagine sleeping on the floor overnight of a section of the ER in order to ensure that your loved one will be seen by a doctor and will remain there long enough to be evaluated?  Without resorting to Title 36 procedures, I did that several times until I realized I'd run out of options and the doctors on staff just didn't "get it".

Can you imagine finally resorting to Title 36 only to be told the person, whose weight was incredibly in the danger zone, was not a danger to themselves so the case was dismissed?  and then to come upon the results of a desperate act that you knew was coming?

Imagine needing to call a lead person of the oversight organization personally to intervene and then finally obtain hospitalization only to experience the horror of learning they were treated incorrectly to the possible point of compete disability?  I could go on and on.  So much needs to change.

So, going back to why I wrote the letter, again a discussion about change MUST include the voices of the families who have experienced situations like this countless times for serious mental illnesses ranging from OCD to schizophrenia to depression to borderline personality disorder (a misnomer) to eating disorders. 

I know other families have similar stories and they need to be heard so those who are leading the forum discussion can get a better idea of what is lacking here.   Transportation needs to be part of the discussion, too, for I wonder just how many people can get to the forum anyway either because they cannot afford the fare or they cannot get home because of bus service cutbacks to their area or not even having bus service and they live withing the city limits! [and one of the candidates for Mayor wants to cut back city subsidization]

I'm not sorry about this rant.  It's been a long time coming.  What I am sorry about is that Tucson does not have enough tools, resources and services.

I know we can do better.

I know we can do better because there is one hospital here that stepped up to the situation and worked to understand what was needed.  The staff was wonderful.  There is a mental health provider team in action here that has gone to extraordinary lengths to understand eating disorders and to provide the best possible opportunities for recovery although residential treatment is unavailable through the system.  To be fair, I should note that residential treatment for adults and even minors is not covered by many, many insurance companies and states nationwide.  This needs to change, too.  There is an Eating Disorder Coalition working in Washington, DC, to effect that change.  NAMI is very active, as well, to obtain parity with coverage of other illnesses.

I know people care.  I know they are stretched.  I know they need help and ideas and solutions.  We all do.

If this hospital and this team can learn and change, so can others.  But, it takes resources.  It takes a forum during which a conversation can occur and other conversations follow to address what needs to be done.  These discussions need people who understand, who are in the trenches both in services or in experience.

We as a community could start by advocating for the publication of PSA's in the paper similar to the quarter-page advertisement I accidentally came upon in the Orem, Utah Daily Herald (in the lifestyle section -- a suggestion coming in a moment) earlier this year placed by the Utah County chapter of the National Alliance on Mental Illness.


The item first described what NAMI is and then listed the "FREE programs that NAMI, UTAH COUNTY runs.  I'll list their offerings in a moment.  I know that NAMI offers several things here, too, but not all free.  I believe a similar advertisement needs to appear monthly in all the sections of whatever publications we have here in Tucson, including for example the Arizona Daily Star, the Tucson Weekly, and Inside Tucson Business.  Mental illness is far more common than many realize and eating disorders which are brain disorders kill more people than any other mental illness.

Here's what's offered by NAMI and advertised in Utah County, Utah:
Family-to-Family: This is a 12-week class for family members who have a loved one with a mental illness.  All of these classes are taught by family members who have a loved one with mental illness.  For information on this class and to sign up, please call [name and number].
Bridges:  This is a 10-weeek class for individuals with mental illness.  All of these classes are taught by individuals who have mental illness and are in recovery.  For information on this class and to sign up please call [name and number].
Basics:  This is a 6-week class for parents of children ages 0-18 years who have mental illness.  All of these classses are taught by parents with children with mental illness.  For more information call....
IOOV:  In our own voice is a presentation where 2 guest speakers share their stories on living with a mental illness.  To find out more about thi sprogram or to schedule a presentation, call......
Support Group and Guest Speakers:  We have support group meetings on the 2nd and 4th Tuesdays of every month from 7-9 pm  The guest speakers fall on the 2nd Tuesday of each month and speak from 7-8 p.m.  All support group meetings are for both the individual with mental illness and their loved ones or anyone who is interested in learning more about NAMI.  If you have any questions, please call....
Family Connections is a 12-week research-based family program.  It was specifically designed to meet the needs of family members who have a relative with borderline personality disorder (BPD), or symptoms of the disorder.  For more information contact bpdutahcount@gmail.com

The local NAMI chapter here in Tucson provides similar offerings.  I think it would be great if the local newspapers would advertise NAMI's offerings frequently!

As an important postscript and indicative of the urgency of discussions and education, specifically regarding eating disorders, The International Association of Eating Disorder Professionals has started a chapter here in Tucson.  This is an important first step towards more awareness and education about eating disorders.  The IAEDP will be offering an open meeting featuring author Harriet Brown on Friday, March 11.  Harriet Brown will also be participating in the Tucson Festival of Books.  Her book, Brave Girl Eating, is a valuable addition to the field and provides a family's experience.

Further Reflections on Events Here and Care for Those with Brain Disorders/Psychiatric Illness

I'll start with noting that this morning there is a very thoughtful discussion on NPR on the Diane Rehm Show about psychiatric problems in young adults.  This can be accessed on line and listened to.  The conversation has ranged the gamut from symptoms, to the legal system, to insurance, to medications (and their cost as well as the availability of the original medication rather than a generic that may not work the same way), to treatment, to housing/care.

Often mentioned is the National Alliance on Mental Illness (NAMI) the website of which is extremely helpful to families who must start navigating the confusing maze that often brings loved ones right back to the start, to need to begin all over again figuring out what to do for their family member.   In fact, the NAMI website today provides a thoughtful statement on the situation here in Tucson.

The reason I feel this is relevant to a discussion about eating disorders is that eating disorders are brain disorders and in addition often there is an underlying psychiatric illness that precipitates a person to turn to coping mechanisms to deal with what they are thinking and feeling.

This is relevant because as those of us who have family members with eating disorders or other psychiatric disorders have discovered, it can be practically impossible still in many areas to get medical/psychiatric assistance for our loved ones, especially adults.  Fortunately, increasingly health insurance companies are recognizing that early treatment and follow up can be significantly less costly to them than repeated hospitalizations that only place a band-aid on the symptoms - meaning stabilization of the ED patient including their electrolytes before release again.

Further, in response to those who ask why more was not done (very well covered in the discussion this morning on the Diane Rehm show), I've provided in earlier posts some of the paths a loved one/parent can take to obtain treatment for their adult child but the bottom line truly is that your child, once an adult, has the legal right to refuse treatment, to be evaluated for treatment (unless s/he is petitioned legally and the petition is granted and acted upon), and even to take medications because many people with mental illnesses can experience what is called anosognosia which is a severe lack of insight, the belief is fixed in spite of overwhelming evidence provided to them, and illogical attempts to explain away the evidence (from p. 33 of Dr. Xavier Amador's terrific book, in paperback, titled I Am Not Sick I Don't Need Help (revised edition) published by Vida Press, New York).  Further, an adult can refuse to permit any member of the treatment team to reveal what is going on unless the person signs releases for specifically named people to know what is going on.

Much of this applies to the current situation because health records are sealed from place to place and incident to incident unless a law has been broken and/or if underage the record can be cleared if a diversion program is entered and completed.  I can personally attest to this lack of sharing records because only through careful record keeping, making copies of records released to me and then provided to new caregivers of others involved in additional situations, have I been able to serve as an advocate who provides critical information for ongoing care.

In other words, do not assume that the current caregiver (including hospital staffs) are at all aware of previous hospitalizations even at that location and the reasons for them,  medications taken, and recorded behavior of the individual.  Do not assume this provision of information even if you have petitioned an individual, as you can here, under what is known in this State as Title 36.  The past can be a blank slate unless this information is brought forward by means available including signed releases.

Further, do not assume that your loved one will be placed in a residential facility or hospital through Title 36 procedures  just because they are deemed to be ill.  Often, if the person is reasonably competent (as many of our loved ones can be even though desperately ill), the person and his/her attorney can persuade the judge and medical personnel that they can deal on the outside and are released, often to the parents who may be in no way capable of providing the care needed.

Here the client is usually still assigned to a mental health provider that is required to follow the person's progress and provide services.  However, with severe funding cut backs, it may take months to get appropriate care unless health insurance is available and even then getting in to see the appropriate person can be difficult.

Laws do vary from state to state.  As I noted in the post linked especially about care for an adult and further about what can one do to set up a team if treatment is denied or refused, other steps can be taken but I firmly believe laws need to be amended somehow to permit the release of records in case an advocate who has followed the person's life is not available.