Guest Post by Marjie Ruth: Memorize and Repeat - Be Consistent and Persistent

[This post seemed especially pertinent to me this week.  I often fail in my efforts to establish and maintain healthy boundaries.  Practice, practice, practice.]

Let us not look back in anger or forward in fear,

but around in awareness.

~ James Thurber

 The other week I was communicating with one of our mom's who is currently going through a challenging time of growth with her daughter. "Time of growth" might sound like something of a euphemism when used in reference to dealing with a loved one who is in a serious (sometimes life or death) struggle with their disorder and things don't seem to be going very well. How can a relapse or regression be termed anything so trivial or pleasant sounding as a "time of growth"? Shall we call living on the edge of Hell just a period of "cozying up to the fireplace"? Nope, I'm not underestimating the amount of pain that families go through (lived there, felt it) when the things get rough. Periods of growth, or struggling to grow, are challenging and difficult. Remember the common term growing pains? Yes, now you know why the word pain is used. Growth can be very, very painful and generally the level of pain correlates directly to the level of dysfunction involved. So what might be a less painful though perhaps still somewhat stressful step for a more highly functioning person, is a real crisis with an uncertain outcome for someone battling a serious addiction or personality dysfunction or other mental illness. 

At all times and especially during the challenging moments with our loved ones, it's especially important for each of us to be consistent and persistent in the establishment and maintenance of healthy boundaries. Be consistent: be clear to yourself and your loved one as to what your boundaries are and say the same thing over and over if necessary (see: persistent) to stay on point and to get the point across that you mean what you say; be on the same page with your spouse, or partner, or other involved family members so that the message is consistent among all; avoid second guessing yourself--especially under pressure--and retreating back to your old comfort zone of enabling behaviors. Be persistent: stay the course as growth and change generally take much longer than we would like, hope, or expect. So often we give up and give in without realizing that we just veered off the path of the goal we so wanted (growth and change) and have derailed recovery because it was simply too uncomfortable for us.  Frankly, it's no fun being a border control guard, but that's the role that we pretty much must assume in order to protect and enforce the boundaries that we establish with our loved ones. It's difficult because their addiction will constantly want to test those boundaries to find the weak chink and attempt to break through. That's what desperate disorders/addictions do. They fight for survival through exerting control over their host--your loved one. Sound like an invasion of aliens? That's what it often feels like to us, but to them it just feels like trying to make it through another tough, tough day.  

And it can be tough on us to feel as though we're being harsh and mean and cold by enforcing the "rules", but I guess that is simply the way it feels when we have to stick with healthy boundaries against the onslaught of a very ugly disease. Addicts retreat repeatedly to the "comfort" of their addiction because it feels good/safe in the moment. And then when that brings negative consequences down the road, guess what they do to deal with those bad feelings? Yup, it's back to the addiction for another comfort fix. The struggle for recovery can be very painful for everyone involved or affected by the addict. What we need to constantly remember is that one good result does not a cure make. In other words, the lure of the addiction is so strong, it takes a lot of new learning and growing to get to a place of being able to resist it. So that means we must continue to stay grounded in our enforcement of boundaries for a long long time...for always. 

Wishing for you strength, courage, peace, and hope.

Marjie Ruth

727-244-9011 (c)

sruth1@tampabay.rr.com

Part 3 of 3 of the F.E.A.S.T. Conference, January 31 through February 1, 2014 - Connecting the Dots: Expanding the Knowledge Base and Extending the Circle of Care to Fight Eating Disorders

As an advocate mostly through my blog but also through other activities including sharing experience, strength and hope on two websites, my trip to my State Capital to provide legislators with my and my family member's abbreviated story after presenting the same 20-minute story to a group of local therapists, as well as low-keyed (well, maybe some don't think it is/was so low-keyed) coaching of key members of my family member's team, I was curious to hear Laura Collins Lyster-Mensh's presentation as well as Colleen Wise's the following day.

Laura is the Founder and Policy Director of F.E.A.S.T. and much, much more as can be learned if you read her bio.  I find it difficult to address her as Lyster-Mensh or even Collins (the name she used for years) because she has become my and many people's amazing hero and citizen scientist and I am startled at times to realize that I, like many others, are on a first-name basis with this incredible woman.

Her talk was titled, "An Advocate's Vision for a Complete Spectrum of Care," and her vision, I believe, is not just for those who are ravaged by eating disorders (and here I am talking about all of the people affected when a family member develops one) but anyone who needs health care.

Rather than to report the details of her multi-faceted vision, which will be available at the F.E.A.S.T. site, I found it ironic to recognize and reflect, as I listened to Laura's presentation, that my family member's care has been anything but a continuum.   Rather, it has been a patchwork of a dysfunctional mental health system; of laws well-intentioned but at times interfering and discriminatory; protocols that have been standard or above average to substandard or not standard at all that vary from institution to institution; of communication -- partial or even miscommunication between and among caregivers that has at best prolonged her illness to actually has endangered her life; of at times a piecemeal approach to diagnoses and treatment independent of comprehensive records; and of people/organizations who ranged from incredibly devoted to bringing a person into recovery to interested in treating only one aspect of the illness to a few who were downright sadistic and uncaring.

We have met and been helped by individuals and institutions who/that have bent over backwards in an attempt to identify possible effective courses of action, who have offered reduced cost of treatment given our extended family's increasing burgeoning expense, who served pro bono in a variety of capacities, who have stretched their institution's capacity to work with our family member, who have answered a telephone call from an absolute stranger (Kitty Westin did this for me several years ago after I was given her private number by a friend in a medical setting who observed the dire circumstances my family member was in), and who have listened when I have presented information that could not possibly be comprehended in a weekly one hour session. And, so much more.

There have been several times over these many years if you'd asked me if I thought my family member would be alive in one, two, seven and now twelve years in this second go-around, I would have retained hope of the possibility but uncertainty that her body and mind could survive what has happened to her.  I know that others have experienced equally challenging situations and others have lost the fight.  In fact, at the beginning of her relapse, a friend and therapist told me more than ten years ago to "hope for the best and prepare for the worst."

Yet on the plus side, as I expressed in Part 1, advances have been made in the knowledge and treatment of eating disorders that have made survival and even a productive life more of a possibility for the boys and girls, and young men and women who have been undermined by eating disorders.  Much needs to be done.  It seems the bottom line is the absolute necessity of getting information from doctors, clinicians, psychiatrists, scientists and other researchers to those who actually are diagnosing and treating individuals far faster than happens now (at the 2010 NEDA Conference I heard the remark that it can take twenty years for research to reach those who practice; this marker has certainly been reduced thanks to the internet, devoted scientists, and determined advocates) combined with the requirement that all in this field -- in fact in any aspect of the mental health field -- be recertified to demonstrate that they are current with findings and implement them for those in their care.

Dr. Thomas Insel, Director of the National Institutes of Mental Health, suggested a recertification requirement in his presentation to those attending the F.E.A.S.T. 2011 conference.  By the way, he also keeps a blog and recently revealed that his daughter struggled with an eating disorder.  You can find more about him here.  Also, here (NYT article).  He's been a wonderful advocate to many.
I will close this personal response to Laura's concept of the ideal Complete Spectrum of Care by describing (since the image disappeared) five concentric circles, the innermost one being the patient .... or actually in an ideal situation I would call them human cells, as it were, with permeable membranes so that information flows freely between and among all components, the components (from outer to inner) being the law, the community, the professionals, the family, and the patient.

So, how does a person determine whether or not the information that appears in research documents, published papers, reports at conferences,  the media and so on is valid?  Why treatment at one facility might correctly be characterized as more effective than at another?   What conditions must be met to assure us that the data are correct so we know, for example, that x protocol is better than y, or that Family-Based Therapy is effective?

To better understand these and other questions, I looked forward to attending Siobhan McGurk's presentation, augmented by informational slides including this checklist

(Siobhan McGurk, 2014, used with permission.)

of what to look for when reading a paper as well as a hilarious example (you'll need to view the video to get the full effect of the laughter that followed) of how an unsuspecting individual could reach a preposterous conclusion about the cause of Global Warming.  I think the expression is, "correlation does not equal causation."  If anyone was asleep at the beginning of her talk, certainly that slide and the laughter woke them up.

McGurk's talk, "It's Elementary: Decoding the Evidence in Evidence-Based Medicine, a How To Guide" was designed to show us how to read and make sense of the literature.  She walked us through definitions, illustrations, examples of abstracts as well as papers, and explained contents, language and symbols used such as p value.  She explained levels of evidence; the differences between types of studies (for example cohort studies) and clinical trials including what she termed the gold standard, which is a randomized control trial and why the RCT is the gold standard.  I encourage readers to access her talk when it appears on the F.E.A.S.T. website.  The information in her presentation will certainly help me to distinguish between results of works in progress as well as anecdotal evidence and valid conclusions that can be implemented to make a difference in treatment and outcome.

A helpful but nowhere near as detailed as McGurk's presentation is this one published by the University of Minnesota - "Understanding Research Study Designs."

I was also surprised and pleased to learn that all medical studies published in this country must be submitted to the United States National Library of Medicine so they can be accessed and read.  The NIH maintains this website.  What a resource and certainly worth a visit.     The Wikipedia description provides extensive information about the purpose of the Library.

Although I did not list this presentation in my initial piece about the conference, I recommend Dr. Kerri Boutelle's overview of Family-Based Medicine, that followed.  Incorporated in FBT is the principle that there are three phases of recovery.  I regularly read Dr. Sarah Ravin's blog and I referred this outline to my family member's treatment team.   Dr. Ravin discussed Phase II here and, in fact, there's a link to Phase III, as well.  Again Dr. Boutelle's presentation was taped and will be available on the F.E.A.S.T. website.  I do want to note there was considerable discussion around the re-feeding topic and the "how" and "what" of it.  Several participants of the conference pointed out that one of the most "popular" discussions on the Around the Dinner Table site is what, how much, and how to refeed.

I've been a frequent visitor to and reader of Dr. Julie O'Toole's blog.  She is the Founder and Medical Director of the Kartini Clinic in Portland, Oregon.  Her talk, "Towards a Definition of State not Weight" provided us with additional information she believes is valuable to understand where a young person is on the road to recovery.

As I've found, often insurance companies evaluate a candidate for treatment (and therefore financial support) based on their weight and/or BMI.  As I've also observed over the years and read in published research papers, not much can be accomplished during therapy sessions without weight restoration so weight has become a key indicator not only for progress on the road to recovery but also payment for and release from the care of a residential facility.  However, what I've also observed, just because weight has been restored does not necessarily mean that the person is recovered or perhaps better worded, in recovery.

Dr. O'Toole believes and is collecting evidence that markers for State are also important and their clinic uses blood tests to determine how the child's or adolescent's biology is doing.  I extracted the following paragraph from her blog of  November 27, 2013 titled "Eating for Life" to explain accurately what the Clinic does and why.

We currently do metabolic testing on all children on admission to our program as part of our effort to understand and work with their individual biology.  Typically, in the case of AN and disorders involving weight loss, we see low levels of leptin, low thyroid hormones (TSH, T3, T4), very low female and male sex hormones (LH, FSH, estradiol, testosterone), low zinc levels, low nutritional markers (C3 and total T3) -- all at levels consistent with starvation.  And typically, as we track them through weight restoration, these levels come up to normal and the child -- if a girl --  either initiates or resumes menstruation. Boys get their testosterone back and with it their energy.  That is, some boys and some girls.  Others however, depending no doubt on their genetics, go off the rails in a couple of ways.  Some develop insulin resistance and post-prandial hypoglycemia, others develop apparent leptin resistance.  Some have stubbornly low leptin levels that act as a “stop!” signal for return of female hormones (no LH surge, low estradiol).

As Dr. O'Toole continues to make a case for the necessity of these markers, perhaps doctors and medical personnel involved in the treatment of those with anorexia and other eating disorders will also include these tests and eventually a study can be conducted to evaluate the necessity of adding these and perhaps other markers to the list of what could be considered a medical description of a return to a nourished state.

My aside scribble in my notes is a suggestion that an endocrinologist be added to the team of an individual receiving FBT or to the team of an adult receiving outpatient therapy as well as to the staff of facilities that treat eating disorders.

After another wonderful lunch, this time of salmon, we returned to hear Colleen Wise, a Parent Advocate, discuss "How to advocate/educate while telling your story."  As an aside, I've struggled in the past with what to include in any presentation I make as an advocate about the effect of an eating disorder not only on our family member but also on our extended family.  I've considered that my family member's story is really her story, not mine.  Yet none of us in the family can truly extricate ourselves from the effects of the eating disorder on a person who we all have known since birth, who we love dearly, and about whom we have wonderful and funny as well as now in fact terrifying and sad memories.

So often we must advocate for another stay in a hospital or in a residential facility or in a facility that offers outpatient care.  I remember responding to a friend that the cost for residential averaged (this was several years ago) $1,000-2000 a day!! and watching her jaw sag in disbelief.

Thanks to organizations like The Eating Disorders Coalition in Washington, DC, there are now organized opportunities to advocate for our loved ones before members of Congress as well as at the State level thanks to the National Eating Disorders Star Program that brought me to Phoenix.

There are opportunities for us to speak out when we see an advertisement in the media or hear someone convey misinformation or repeat tired phrases that insinuate blame on the family.

Colleen presented a humorous and also very emotional account of her family's story accompanied by photos.  In Part 1, I concluded with some thoughts on the heartbreak that can occur in families when the eating disorder interferes with the relationship between mother and daughter or mother and son.  This is not uncommon; I've heard this far too many times and from families that were loving and intact until the disorder made its appearance.

Some of Colleen's points included the very important notion of removing anger out of your presentation, to be succinct, take brochures and other informational material (like the F.E.A.S.T. publications), try to find common ground and common goals, and present relevant facts.   I particularly appreciated her suggestions on how to phrase the introduction of information that hopefully would change, for example, a doctor's approach when working with your family member.  I loved her comment that you don't have to be an expert.  I know I can become cowed by authority and fail to make simple informational points that could change the point of view of the leader of a treatment team.  Watching Colleen's presentation and hearing her suggestions was very empowering and very helpful.  I encourage readers to watch her talk when it's uploaded to the F.E.A.S.T. website.

In closing, I again want to thank the conference organizers and presenters, the parents and those in recovery who attended and whose comments enriched our experience, the representatives of treatment facilities who attended, as well as the ever-present moderators on the F.E.A.S.T. Around the Dinner Table website/forum.

Part 2 of 3 of The F.E.A.S.T. Conference, January 31 through February 1, 2014 - Connecting the Dots: Expanding the Knowledge Base and Extending the Circle of Care to Fight Eating Disorders

Before starting Part 2  I again want to emphasize that I attended all the presentations and took copious notes.  I've selected those to comment on here that provided subject matter I specifically wanted to learn more about.

Looking at the subtitle of the conference -- Expanding the Knowledge Base and Extending the Circle of Care to Fight Eating Disorders -- I decided to start with the last session of the conference first and focus on one of the messages I gleaned from a wide-ranging discussion during "A Family's Recovery Story" presented by Julia and Sonja Kranz and moderated by Sarah K. Ravin, PhD.  I acknowledge here the tremendous courage and willingness of this family, especially of Julia, to share her recovery story.  I was privileged to sit with them during a meal and to listen to more of their story - of a mother and her daughter.

The message I received and that Laura Collins Lyster-Mensh also highlighted  (Laura's was much more comprehensive) in her presentation titled "An Advocate's Vision for a Complete Spectrum of Care" jumped out at me [the following kind of thing has stood out for me often while reading a variety of works during my family member's journey] when I was  reading Walter Isaacson's outstanding biography of Steve Jobs.  Chapter Forty-One Round Three - The Twilight Struggle includes the story of Jobs' revelation of "....facing a problem that he never permitted at Apple.  His treatment was fragmented rather than integrated.  Each of his myriad maladies was being treated by different specialists -- oncologists, pain specialists, nutritionists, hepatologists, and hematologists -- but they were not being coordinated in a cohesive approach....  'One of the big issues in the health care industry is the lack of caseworkers or advocates that are the quarterback of each team,' Powell [a member of his team] said."  [Steve Jobs by Walter Isaacson, Simon and Schuster, New York, NY 2011, pp. 549-550.

Julia's experience included the work of an ever-present and apparently expanding team of people at the Mayo Clinic where her mother, Sonja, is a staff Occupational Therapist.  Starting with Julia's pediatrician who followed her from birth, Julia with her mother's loving persistent advocacy, received the continuum of care that was necessary in her recovery from what her doctor observed to be the most severe case of anorexia reportedly he'd ever seen.  Julia described how her team would meet weekly to review all aspects of her illness.  The team also considered other aspects and brought others on board as needed.  Fortunately for her,  each team member had the additional option -- and used it -- of accessing her file and bringing themselves up to date on what was happening in each discipline at every step.

Julia and Sonja chose not to focus on Julia's behaviors while she was ill during their presentation but rather to discuss the high and low points of her treatment, her co-morbidity of OCD and her progress.  Ultimately, though, I was struck by the importance and presence of a rather incredible team approach and its willingness to completely involve Julia and her mother.  This is the concept of a continuum of care and Family Based Therapy, I believe, should look like for anyone in treatment with an eating disorder.

I posted about the need for a team on my blog and repeat here the observation that all members of the team, if not united in the fashion of Sonja's or my family member's teams were, must agree to communicate with one another on a frequent basis.  If the individual being treated is an adult, the family/advocate needs to obtain signed releases of information so that all team members can communicate.  More often than not I have found myself, as I know other parents and family members have found themselves to be, that quarterback.  It's exhausting but can also be quite rewarding.

Now I'll turn to Friday morning, the first day of the conference, and to Laura Hill, PhD, FAED, President/CEO/CCO, Center for Balanced Living, Worthington, OH, who presented the keynote following Executive Director of Feast Leah Dean's welcome.  As her bio for the conference notes, Dr. Hill together with Dr. Kaye at UCSD are "....working to transform clinical interventions into biologically based tools for patients and their families at all levels of care."

Before I share more, I ask that readers watch her TEDx Columbus presentation of 2012 because the 18 minute video provides the majority of what she said.   I'm going to talk about/reflect upon those aspects most significant to me.

Hill's presentation was a revelation to me and the continuing long breakfast conversation among those of us at her table the next morning reduced me to tears when I spotted Leah Dean shortly afterwards before Saturday's program began.  Tears, because I felt that another layer of the proverbial onion had been removed so I could better understand what my family member experiences and because part of me wishes that I and her team had known this information and the disease's probable affect on her from the get-go (25 years ago).  But we're here and it's now and I do hope that other parents will take the time to learn more about the disease from a neurological point of view.  I particularly liked the story about the dad who helped his daughter navigate dinner out.  I know that my family member appreciates having a copy of the menu before walking into a place.

We were reminded that responding to an eating disorder as one would, for example, to diabetes helps one to step back and understand this as an illness/disorder and not a choice.   The brain pathways of one with this disease do not communicate in the same way as those who do not have the disease.  The bottom line is your loved one cannot "just eat" or "listen to your gut" because her signals aren't using the same pathway as yours and/or they're different and perhaps even aren't felt. When s/he eats s/he has a different reaction to food.  One might also say, as do those who have the disease of alcoholism, that the person is "allergic" to food.  However, as I posted recently in my blog, food is life.  One can quit alcohol and/or drugs because these aren't necessary for life; one cannot quit food and continue to live. 

S/he needs help through therapy (think of Cognitive Behavioral Therapy or CBT or Dialectical Behavioral Therapy and focus on the word behavioral for a moment).  S/he needs to learn to think in order to manage feelings.  For many of us, it's not natural for us to think first and then act; often, we act first and then think.  Again, s/he needs to learn to think in order to manage feelings.

However, until your loved one has become re-nourished and stabilized  her brain most likely isn't going to be able to utilize any kind of therapy so the first steps, as outlined in this new F.E.A.S.T. Family Guide to Eating Disorder Treatment - How to Choose a Treatment Team for a Loved One with an Eating Disorder in the U.S. , again are (p. 3)

1. the interruption of life-threatening behaviors
2. medical stabilization
3. normalizing nutrition and/or weight stabilization
4. development of a comprehensive, long-term treatment plan

Once these steps have been taken, then it's important to remember as revealed in the video linked above that her (and I'll stick to "her" from now on but emphasized s/he because boys and men get eating disorders, too) brain gives her different messages or even none at all (a weak or perhaps no signal from the gut) than you or I receive while eating.  Anorexia can flatten or even remove taste.  Those with bulimia often experience the first bite as tasting wonderful but subsequent bites not at all or vaguely similar so they start to "chase" after the taste sensation (and pleasure) of that first bite.  And, they often cannot sense that they are "full" until they've had practice focusing on what "full" feels like.  They need to learn how to compensate and more importantly they need to understand that it's not their fault.  And, parents, it's not your fault, either.

Dr. Hill also observed something that I lived during my early recovery and that was my discovery that I could maintain my recovery and progress by sticking to a very simple/few item meal plan.  I've never quite understood the practice of treatment centers laying out multiple choices in a buffet style and expect those in early recovery to be able to make choices.

What really shocked me was Hill's demonstration of the noise that can accompany eating.  I finally understood what my family member meant when she told me that as she returned to what had been determined to be a normal weight for her she could no longer read fiction because the chatter in her head got in the way.  I asked her, because it's been evident that she hasn't been psychotic, what she meant and she simply said she could not concentrate because of the noise.  I didn't understand what she meant; now I do.

Having watched the video, I suspect the reader has a greater appreciation for why not eating/staying hungry creates a much "easier" state for the person to remain in.  Being anxious is very difficult.  Eating has been found to vastly increase anxiety.   For those who are interested in another view on anxiety, I refer you to the revealing article titled "Surviving Anxiety" by Scott Stossel, the Editor of The Atlantic, a magazine I spotted on a rack at the airport before boarding my plane last Thursday.

The sequence of presentations clearly had been planned, for the next presentation of the morning was "Is there a role for DBT in the treatment of adolescent eating disorders? Who, When, How?" by Lucene Wisniewski, PhD, Clinical Director/Co-Founder Center for Eating Disorders, Cleveland, OH.

DBT is an acronym for Dialectical Behavioral Therapy.  There's a specific definition and protocol for this type of therapy that was first developed by Dr. Marsha Linehan for the treatment of suicidality and Borderline Personality Disorder (BPD) which she later revealed that she'd been diagnosed with herself.  If you want to learn more her and her revised view of the disorder of BPD, I recommend that you go this link.

My family member had been receiving a variation of DBT from an eating disorder specialist for many years but made little progress.  Last year her previous team leader found a therapist who is certified in DBT and adheres to the components of the therapy including - and this is very important because the person with Borderline Personality Disorder (BPD) can and will often overwhelm their therapist - having a therapist of her/his own to review progress with clients and the methodology.  I've written several posts on my blog about  BPD and read several books, as well.  Given that many of the behaviors that appear when one is in the thick of a battle with the ED resemble those of BPD, DBT is currently endorsed to be an effective therapy for those with eating disorders.

Dr. Wisniewski reviewed the basics of DBT and discussed its application for those with a diagnosis only of eating disorders including mild bulimia and binge eating disorder.  She also touched upon its use for those with more serious entrenched eating disorders who have also been diagnosed with multiple morbidities, for example Borderline Personality Disorder.

She explained that dialectical refers to thinking two things, often opposite, are true at the same time - for example, remembering what was described as noise above, "there's lots of noise and you still need to eat."  The therapy focuses on problem solving and skill building; it embraces both validation and change.  The goal is to think and behave differently.

Basically, as Dr. Wisniewski stated, BPD is a disorder of dysregulation and the dysregulation occurs in the person's emotions, interpersonal relationships, self - often the loss of sense of self, behavior, and cognition.  The person may often say "I don't think clearly."  Think about this and reflect upon what Dr. Hill said above and how much more difficult life must be for one with an ED and BPD.  This is relevant because many times those with ED also have BPD traits or even the full blown diagnosis and a careful analysis is a good idea if the thoughts/behaviors do not go away when weight has been restored and the person's state is determined to be in recovery.  [Incidentally, one of the best books I've read about BPD is Borderline Personality Disorder: New Reasons for Hope by Francis Mark Mondimore, MD and Patrick Kelly, MD published by the Johns Hopkins University Press, 2011.]

Wisniewsky asked us to remember that patients and parents are doing the best they can; all want to improve, all must learn new behaviors in all relevant contexts, and finally that one cannot fail at DBT.  The treatment team or therapist may fail a person who needs it, but the person  does not fail.

The protocol for DBT is important.  If a parent or family member is looking for someone to provide DBT, they must use these classical primary modes and in the case of someone with an eating disorder they must be able to meld the modes effectively with those for the treatment of eating disorders.  I might add here that add to this certification in Family Based Therapy, and everyone wins.

The modes used by the DBT therapist are:

1. individual therapy with family involvement in a safe environment
2. group (i.e. interpersonal) skills for the individual
3. telephone coaching aimed to decrease crisis behavior and sense of conflict
4. team consultation/therapy for the therapist
5. a six month commitment

In closing this section, Dr. Wisniewski presented a valuable argument for the use of DBT.  Frankly, I wish I'd known about DBT almost forty years ago when I was recovering from bulimia.  I often use tools that my family member has learned and passed along to me when things seem to get out of control and they work!

Part 1: The F.E.A.S.T. Conference, January 30-February 1, 2014: Connecting the Dots - Expanding the Knowledge Base and Extending the Circle of Care to Fight Eating Disorders

Now living my 70th year, I am less enthusiastic about traveling given the increasingly unpleasant conditions one needs to contend with including less space, more fees, and fewer amenities.  However there are several things that will get me on-line to make travel reservations, among them visits to see my four grandsons (and their parents!); vacation trips, particularly those that give me some refuge from the summer heat where I live; and opportunities to learn - treks and conferences especially.  Included under the conference topic are offerings providing more up-to-date and family-based-therapy-oriented (the best kind IMHO) information about the treatment and understanding of eating disorders.

So, when F.E.A.S.T. (Families Empowered and Supporting Treatment of Eating Disorders) identified Dallas as the location of the 2014 Conference scheduled at the end of January/early February, I  allocated accumulated miles towards a round trip (one hop) ticket, reserved my space at the early bird registration rate, booked a ride at a reduced rate on a shuttle that promptly picked me up and dropped me off going to and returning from the conference and booked a room at the Crown Plaza Hotel (for me 5 stars) located outside Dallas in Addison in what turned out to be a lovely neighborhood for walking at the end of the day.

Startling advances have been made in knowledge about and treatment of eating disorders from the time of my family member's first residential treatment in 1991 following at least two years of group therapy (I was told one month IP would do it, she could go on to begin college in the fall, and amazingly enough the cost at that time was $30,000) through her second relapse beginning in 2002 up to the present day as she continues to deal with the ED monster plus co-morbidities.  Although some therapists -- and organizations -- have continued to advocate for parentectomies and/or the sidelining of families where the individual's life takes place for a sizeable portion of the day, Family Based  Eating Disorder Therapy is gaining traction among psychiatrists, medical personnel, therapists, dietitians as well as treatment teams at major and well-known treatment centers coast to coast in the United States.

Laura Collins' book Eating with Your Anorexic (2005) was my first encounter with a variation of the FBT approach and although I learned much from it, we were not able to implement Laura's or later Harriet Brown's in her book Brave Girl Eating (2010) experiences because our family member's first encounter with psychiatrists at a local hospital and four months later therapists at a well-known residential treatment center told her that we were the problem.  Following treatment she refused to even consider living with us or our assistance in spite of our willingness to drop everything and provide her with a structured transition.  Fast-forward through more diagnoses, well-meaning but uneducated moves by those within her mental health provider to force her to choose to change her behaviors and "just eat" despite a severely malnourished state, many more residential treatment stays ranging from three to six (the longest) months that overlapped more recently with four years of a coordinated team approach to somehow find a way to help her change her behavior and here we are today with an exhausted and  discouraged woman who has pretty much given up on any hope of recovery from her eating disorder or a productive life unless she can find a solution to "the food thing."  The "food thing" and DBT appears to be her way "out" of several behaviors and she has an excellent local therapist.  Getting her to therapists and her dietitian and later getting herself there are major goals once she again is on her way to being re-nourished sufficiently.

As is noted and endorsed by top people in the field in the new F.E.A.S.T. Family Guide (January 2014) titled A Feast Guide to Eating Disorder Treatment:  How to Choose a Treatment Team for a Loved One with an Eating Disorder in the U.S., (p. 3):  "The immediate goals of ANY [emphasis theirs] treatment approach should include:

1. interruption of life-threatening behaviors
2. medical stabilization
3. normalizing nutrition and/or weight stabilization
4. development of a comprehensive, long-term treatment plan"

Yet/meanwhile, advances in understanding have continued.   A clearer definition of Evidence-Based Treatment and its application in the field is causing therapists and psychiatrists to re-think and even profoundly alter their treatment approaches.  I wish more professionals would at least listen to and perhaps get away from stubborn denial that another approach could work.  Neurological studies such as fMRI studies conducted by Dr. Walter Kaye, Program Director of UCSD based Eating Disorder Research andTreatment Program, and interpreted for parents and families by psychologist like Dr. Laura Hill in her 2012 TED talk have revealed that the malnourished brains of those with eating disorders do not process information in ways scientists and therapists might expect.  Others like Dr. Julia O'Toole of the Kartini Clinic have begun to provide, through blood/endocrine studies of their patients, what she terms a "Definition of State not Weight."

The fastest way for me to learn about and understand and hopefully introduce to my daughter's treatment team (who are overwhelmingly busy as are most providers with multiple clients and limited time) is to either attend conferences or study published research papers which often need to be interpreted for a reasonably well educated person (me)  by people like Carrie Arnold who recently published Decoding Anorexia (2012).  When I hear about eating disorder conferences, I look for those that will provide me and others with updates and understanding.  The F.E.A.S.T. conference offered potential.  I grabbed the opportunity.

Although all the offerings were important to and well-attended by the conference go-ers, mainly caregivers, seven sessions were of specific interest to me to address the issues I've listed above.  I've attached a link to the bio's of all the speakers.  Here's a link to the full two-day program.     We were told that videos of the entire conference sessions and the powerpoints of presenters will be uploaded at a later date so I will not go into the detail I provided when I blogged about the first F.E.A.S.T. conference in 2011 (also in two parts and here are link one and link two for those - note that these are available via video on line) but rather quickly, in Part 2 to be published in a couple of days, describe some of the highlights for me.

Laura Hill's keynote, "Eating Disorders from the Inside Out"
Lucene Wisniewski's "Is There a role for DBT in the treatment of adolescent eating disorders"
Laura Collins Lyster-Mensh's "An Advocate's Vision for a Complete Spectrum of Care"
Siobhan McGurk's "It's Elementary:  Decoding the Evidence in Evidence Based Medicine, a How-To Guide"
Kerri Boutelle's "Family-based therapy; What parents should know"
Julia O'Toole's "Towards a Definition of State Not Weight"
Colleen Wise's "How to advocate/educate while telling your story"

I attended all the offerings except when two were offered at once.  I'm always interested in improving self-care -- needs to be extreme at times -- and learning about recovery stories so I attended those sessions offered the first day by Becky Henry and the second day by Julia and Sonja Kranz, moderated by a remarkable therapist (who blogs) Sarah K. Ravin. Two grandparents of another young woman who is in recovery offered "how can extended family support a loved-one with an eating disorder."  I enjoyed meals twice with the grandmother.  There were at least four young women in recovery at the conference. These conferences also offer opportunities for renewed and new connections.  I want to mention here that I am grateful to Claire S. for her warmth and companionship during the conference when I struggled at times.  We met each other on the van ride to the hotel and reconnected several times during the conference.  Claire runs two support groups in Santa Fe, New Mexico.

Before going into specifics in my next post (Part 2), I want to applaud the conference committee not only for an outstanding conference but also for selecting a wonderful hotel (food, service, areas to socialize, meeting and dining rooms, and my wonderfully quiet clean well-appointed room) that provided a map of a safe 2 mile walk through a neighborhood and around a small lake.  The schedule, while packed each day, was do-able and time was allotted for discussion.  When discussions carried over, flexibility helped those attending to gain more information.  Several speakers attended the meals and willingly shared more information and answered questions.  For example, I was bowled over by Laura Hill's willingness to enthusiastically share what she has learned by interviewing people while they are getting MRI's.  Several of us spent our entire Saturday morning breakfast plying her with questions which she expansively answered.  I entered the meeting room in grateful tears and profusely thanked Leah for such a great conference.  As usual, we all  laughed as well as cried during  sessions and all seemed to thoroughly enjoy the casual, western-themed dinner party on Friday night.

Finally, in this introduction to the conference, I want to comment on what seems to be a universal component for families and that is the sadness in the recognition of how perilous and tragic the assignment of guilt/blame is when families (both sides of the equation) are battling eating disorders. 
We can never know both sides of each family's and their unique beloved family member's story without living the experience with them.  Nor can we possibly fathom the anger that comes from involvement with the invader that takes a family member away from their family and often turns them into someone we don't recognize and sometimes who turns completely away from his/her family to the point of long-term estrangement.   Harriet Brown, in her book Brave Girl Eating, referred to that "person" as not-Kitty as a way of separating her beloved daughter from the eating disorder.  Colleen Wise described the loving effort she took to reunite with her precious daughter by arranging retreats for the two of them.  One cannot describe the agony of being a parent separated from the love of one's child by this wretched disorder.

I really do hope that someday each family member affected by an eating disorder can recognize that everyone was doing the best they could at the time with what they were told by people they believed knew what they were talking about.  A saying I learned (and have mentioned on this blog before) while attending a NAMI Family-to-Family course is "you don't know what you don't know."  We parents are forever learning how to learn while dealing with this awful brain disorder and its aftermath.  

A sincere thank you to everyone who participated in this year's F.E.A.S.T. conference.