November 30, 2008

Join me for lunch on Monday?

In the first of what will, I hope, be a series of online radio shows, I invite you to join me online tomorrow** for:

Lunch with F.E.A.S.T. on BlogTalkRadio.

Tune in at noon, New York Time, to help us test run this format. We'll take questions, talk about FEAST, and eat our lunch (or breakfast or dinner or snack depending on where you are). It is "potluck" so bring something yummy.

Future shows will feature some of F.E.A.S.T.'s Advisory Panel, Parent Council, and experts in the ED world. We also hope to offer support chats at various times of day so families around the world can join us at convenient times.

This is Internet radio, so you can listen online in real time. It will also be archived for download later to listen at your leisure. If you would like to call in to join the conversation, use the number on the website. It is a toll call to the New York region - but you can also call using your computer: follow the instructions on the site. My advice: use a microphone and earphones if you have them - your audio and voice will be clearer.

**Monday my time will already be Tuesday for my friends on the other side of the earth.

November 25, 2008

Refrigerator Mothers, Warrior Mothers: One and the Same?

One of my favorite bloggers, Autism Vox, has written a post that will resonate, I believe, with any parent in the modern world.

It will have special meaning for those parenting children with illnesses misunderstood by society and invisible to society in all the important ways.

For parents who live with the "anorexigenic" stigma every day, I'm sure Kristina won't mind if you read it twice: once as she's written it, and second replacing "autism" with eating disorders.

The links are excellent, the topic is timely, and the analysis: fearless:

Refrigerator Mothers, Warrior Mothers: One and the Same?

November 24, 2008

health takes a holiday

I understand why PATIENTS ask for a "free day" when holidays come around: a break from the pressure from family to eat normally, when standards for recovery are set aside in hope of harmony and tradition. That request is in character for a person under the control of an illness seeking to kill and disable its victim.

What I don't understand is why professionals would go along with it, or encourage parents to do so. It is particularly galling to me when the "don't be the food police" phrase get a whole new life during the holidays - after I've spent all year trying to empower parents to take control of eating to save a child's life.

Is eating less important during the holidays? Is the relentless need to restore the body less critical because it might freak out Aunt Somebody who is on a diet and the cousins may feel awkward if you refuse to carry on the 'not eat until 2pm and then gorge' family custom?

The eating disordered mind is always looking for a "free day," a "break," and a higher priority. It seeks data on what mom thinks is more important than that mid-morning snack. For what embarrasses dad in front of his brothers so much that he'd compromise on making sure dinner is on time.

I say don't give ED a holiday. Don't withdraw the safety you provide. ED is asking you "What does it take to make you back off? How much, exactly, do you really care?" And he is taking notes.

The gift you give to ED during the holidays in front of Grandmother and wrapped in keeping peace will keep on giving all year long.

November 23, 2008

What's wrong with this picture?

What is missing here?

Probably: your treatment provider!**

The F.E.A.S.T. Treatment Provider list (now available in map form) is open to all eating disorder specialists and clinics who agree with F.E.A.S.T.'s principles.

Why another list? Unfortunately, parents seeking treatment for a loved one usually choose providers from a list based on proximity, or marketing dollars. Some lists are paid advertisements, and the more a provider has to spend the higher their placement on the list.

I think proximity and marketing budgets are a poor indicator of a provider's ability to help our families. While much of what a clinician offers patients defies description, there are some helpful clues. Not blaming parents or patients for the illness, and agreeing this is a biologically based illness is a good one. A commitment to evidence based practice is another.
The F.E.A.S.T. list needs parents to help. We need you to ask your treatment providers to go to this page: HERE and fill out their information for inclusion on the list. Help other parents find the family-friendly, progressive, and evidence-based care you value.

Too shy or busy? Send us their contact information (form at the bottom).

With your help, we can help families AND let the treatment world what is important to families!

**If you live in the UK or other on national health system, of course, your provider won't be on the list: because it's 'pot luck' on providers. Which is at least as horrible as the $300us/hour or $1Kus+/day we get to choose!

November 22, 2008

Things I learned at UNC

I promised to share some of the things I learned about while at UNC earlier this month. The 4th Annual UNC Eating Disorders Conference was an optimistic event - it has clearly been a year of progress and creativity in the ED research world in North Carolina.

UCAN (Uniting Couples in the Treatment of AN) addresses an area I think is even more neglected than getting parents involved in the treatment. And while the dynamics between parent and child is fraught - imagine between two adults, and how the issues of body image and eating together and finances and trust get mangled. I applaud this work, which extends some of the CBT work being done with couples coping with other illnesses (brain and otherwise).

NURTURE is also interesting: Intervention for moms with a history of ED. It should not be surprising with a genetically transmitted illness that parents would be worried about their children suffering in the same way they did. Add to that the real practical difficulties of a mother who has recovered trying to get things 'right' with their own child, and the lingering effects on the mother in terms of what/when/how much to feed a constantly changing young person. Oy! This program takes a nurturing, educational, and practical approach to this issue.

CBT4BN is another of several initiatives out there seeking to use the Internet to bring helpful care to those who need it. In a time of financial worry and increasing comfort with electronic communication this type of work could change the way we look at therapy.

Chromium for BED - it will be interesting to see how this research pans out. Chromium is easy to access, inexpensive, and if it helps... will be one of the few therapies to help with an issue gaining well-deserved attention.

November 21, 2008

Mom bloggers

I follow 135 blogs. That is easier than it sounds, because most blogs don't post all that often, and because I use a news reader (Google Reader) which in one click lists all new posts for any of the "feeds" I subscribe to. It is kind of like a personalized newspaper for me: when I have a spare moment I go to the Reader web page and I see the headlines/titles for any new posts. I can read the posts or drop them off my queue. I also use it to search the Internet for issues of interest - no more wondering whether I've missed a news story or a new website on a topic I care about.

If I had to go to the web page of every blog I follow I would go too often for some, and miss time sensitive others - using a reader keeps me organized and gives me an ear to many topics of interest (in my case: eating disorders, tap dance, my local community, psychiatry, filmmaking, parenting, the Kindle, but especially: the blogs of other parents.

I enjoy mother and father bloggers, especially those coping in real time with eating disorders. Sometimes the updates are joyous, and some are grueling. One parent often brings up religion and healthcare, another brings in art and heart, and one mom offers information and resources.

I'd like to see more parents join the blog world. It is free, as anonymous as you like, doesn't require technical skills, and there are no rules. Two websites: www.blogger.com and www.wordpress.com can get you started in ten minutes. Join the blogosphere!

November 20, 2008

Anosognosia means never having to say "help"

Everyone who knows me well knows my favorite word: anosognosia.

It means the loss of ability to perceive the nature or severity of one's medical condition. And it applies to eating disorders in a special way: because friends and family and even many eating disorder professionals can share that lack of awareness.

Are you shocked that I use a term more associated with head injury and schizophrenia? You shouldn't be.

Eating disorders are more disabling and kill more people than any other mental illness. They destroy families, ruin careers, isolate loved ones, and waste the lives of precious loved ones. The issue needs to be treated with the seriousness it deserves, not pitied or shamed. And EDs are arguably no more a conscious choice than other brain disease.

The difference is that eating disorders can be successfully treated. But it requires seeing them for what they are: a real biological condition. Reparable brain damage which compels patients to behave and think in such a similar manner to one another while ill that it could come out of a playbook (one we can read in the Minnesota Semi-Starvation Study). A temporary set of thoughts and behaviors IF we recognize it and stop it.

And by "we" I mean parents and friends and clinicians and the media and the public - not the patients. Our job is: safety, nutrition, understanding, skills, love, time - listening to the needs of our loved ones, and not their words.

November 19, 2008

A personality classification system

As we suss out the personality types vulnerable to eating disorders, scientists have identified a personality classification system for eating disorders which may help (and will most certainly annoy those who eschew these depersonalizing labels. But at one time I'm sure some people objected to identifying blood types, though it turned out to be helpful and indeed completely lacking in moral judgements).
  • high-functioning
  • behaviorally dysregulated
  • emotionally dysregulated
  • avoidant-insecure
  • obsessional-sensitive types

Most interestingly, these classifications may provide information about outcomes as well.

November 18, 2008

If it is changing your bones, imagine what it is doing to your frontal lobe...

The lack of alarm about malnutrition during an eating disorder really frustrates me. While we wave our arms and worry and wait for a patient to "want" to get well, they suffer brain damage. While we settle for mild malnutrition because we think they "can't tolerate" full restoration and "at least he/she isn't starving any more," we risk permanent bone changes.

The best way to treat osteopenia and osteoporosis in anorexia?
"early detection and weight restoration are of utmost importance"

The same treatment all people with anorexia need!

We need to redefine "medical danger." Right now, the standard is based on how bad it has to be to require hospitalization. We need to set the standard at FULL HEALTH. That means full weight restoration to optimal functioning, not just out of life-threatening range.

Just as bone changes are not visible, so are brain changes - it requires many months of nutritional stability for the brain damage of anorexia and bulimia to repair and allow healthy learning and development. No level of eating disorder behavior is safe.

November 17, 2008

You may want to sit down for this...

The good news about the past few weeks is that I've been channeling my frustrations into learning a new tap move - don't laugh - I'm making progress:

video

And now I will share an experience I had last night. I went to a house of a family I do not know. In that home were gathered a dozen people, most of them people I do know - and including several with whom I no longer spend time, having fallen out over matters of race and social issues. Under normal circumstances, I find it hard to be with some of them - and if we were to talk it would probably be to disagree.

But we were there to gather the traditional minyan of ten Jewish people so this family could say the Mourner's Kaddish for the daughter of that house, a 24-year old who died this week. Our disagreements on politics, our past hurts and offenses, our hopes to convince each other of our own rightness - these were meaningless. Last night, and tonight when we gather again, we are members of a community, fellow humans, fellow mothers and fathers offering what solace we can to a grieving family.

I wish the mutual respect and state of common purpose applied more widely.

I am a pretty loud and dogged activist for family-centered care, for nutrition as the first line of treatment, against blaming families or patients, for seeing EDs as a brain disease, and for getting rid of tired ideas about eating disorders. My record is pretty clear on this, and I've never softened or muted those messages. I leave quite a paper trail - and cyber trail!

But my enemy is ideas and institutions, not people. I do not equate people with their ideas. I do not reject people who hold ideas I don't share. I do not exclude people from my life for sharing most of my beliefs but failing others. We are all a community, all seeking the same goals, and none of us with perfect knowledge. There are bad ideas, old ideas, damaging ideas - but people are people in their glorious individuality and dignity. If ED has taught me anything, it is the imperative of humility.

When I disagree with someone I discuss it. I engage. I respect that person enough to be able to hear my point of view, ask the same of them, and I believe that if I am right on something that I have a chance of convincing that person of my point of view by engaging. I cannot control whether they do come to my thinking on a topic, but my responsibility is to speak up and say it - not to make them agree. I need to listen, and hear, and ask good questions.

It is inevitable that by taking a stand, one gets criticized. And unless your stand is the absolute furthest end of polarity then you will get arrows from both directions. I'm proud to say that I am, today, nursing wounds on both sides. There is something to be said for being in the line of fire.

In tap dancing, as in the rest of my life, I'm learning. And frustrations get channeled into progress. With more weeks like these, I will be Donald O'Connor in no time.

For the patient, not just to make mom stop crying

I advocate lifting the burden of blame from families. This isn't to make mom feel better or to get dad to re-engage. This isn't just because blaming is unjustified. And it isn't just me:

"A clinician's articulation of theories that imply blame or permit family members to blame one another or themselves can alienate family members from involvement in the treatment and therefore be detrimental to the patient's care and recovery." (APA's Psychiatry Online)

November 16, 2008

EDparentSupport.net

I love the Internet for the opportunity it provides isolated parents to find support and information.

I applaud this: EDparentSupport.net

November 15, 2008

Help my friend Kathleen -

My friend, Kathleen, sends this query for the parents here. Kathleen is a wonderful activist and tireless volunteer for eating disorders awareness!

"My name is Kathleen MacDonald and I am a survivor of a 16 year battle with various eating disorders, all along the continuum. In 2002 I had a major turning point in my life and I (finally) realized that I was going to die from my eating disorders if I didn't take my recovery seriously. I spent from 2002-2004 working on nothing but recovery, putting into practice all the things my doctor and therapists told me throughout the years, and I challenged every trigger --and then some. After a year of working my recovery, I began to take recovery further than I had ever imagined possible. I began to believe that there was life beyond being in recovery. I dreamed it, and then I began to live in the possibility that complete recovery was possible. I now live beyond recovered. I live beyond all of the years with my disorders, all the years prior to my eating disorders, and I live my Life not as a survivor, or someone recovered, I simply (and gratefully) Live, Always Becoming. ~

I am now in the process of finishing a book detailing how I finally recovered. The book does not focus on how sick I was, rather the focus is on HOW I overcame the complexity and hell of ED. I know that when I was sick with ED, and during my recovery, I alienated my family and friends for many reasons, but especially because that was easier than trying to teach them how to deal with me and my eating disorder. I know it left my family (especially my parents) feeling helpless, angry, and afraid...and it left our family full of tension, and me feeling more of a burden.

Therefore, part of my book is dedicated to the carers of those with ED --and I need your input to make that part of my book a success. I am dedicating the focus of a chapter to answering questions from you, the carers.

This is your turn to ask and have answered questions about ED, how to help, the mindset of someone suffering...anything you wish to better understand, support your loved one/yourself, and to help you get through the insidious battle of eating disorders. (I am also dedicating the focus of a chapter to the sufferers of ED...they have provided insight such as answering the following (and more) :

I need you to understand _________, I wish you understood ________, I am trying to recover, but __________, This is so hard because ______________, It is helpful when you ___________, It is not helpful when you ______________) ~

Thank you, Laura, for sharing this with FEAST members...I know their questions will provide great insight to others via the book. I can be reached at: kathleen@freedfoundation.org "

November 14, 2008

Choose a picture for this story

It cracks me up that to illustrate a story on science you show a glamorous picture of a scientist... thinking!

But with this story - Parents’ Genes Are in Competition - the alternative was probably a graphic of two parents scowling at one another and there's plenty enough of THAT when a mental health crisis hits the family.

Interesting theory on brain disorders. We need lots of new ideas, throwing out of old, testing of theory.
When my daughter was a kid we used to quote Mrs. Frizzle from Magic Schoolbus: "Take chances, make mistakes, and get messy!" Actually, we still do. Little did I know we were practicing CBT for anxiety.

November 13, 2008

What makes psychotherapy work? It's the client!

Despite my reputation for being "only about the food," the truth is that I'm a huge fan of therapy. And skilled therapists. I'm intolerant of poorly conceived therapy and undertrained therapists.

The biggest problem with eating disorder therapy to my mind is this: What makes psychotherapy work? It's the client!

But eating disorder patients are anosognosic: they aren't able to grasp their own state of mind and emotion and cognition UNTIL THE BRAIN IS REPAIRED.

Engaging in therapy requires a functioning brain. It requires motivation and engagement and cognitive flexibility. It requires self-awareness - and eating disorders rob the brain of that while the body is still undernourished. And by nourished I don't just mean weight restored - I mean the brain damage is repaired. I mean you need full weight restoration, behavioral stability, and then a few months of healing FIRST.

I think therapy while a person is still brain damaged or acting on ED compulsions by binging or purging is like therapy while drunk.

If you showed up for your appointment drunk or high, I don't think it would be ethical to sit and explore your issues or review your week. But people routinely show up for therapy while underweight, having recently binged or purged or over-exercised.

It is time for a zero tolerance for continuing brain damage during eating disorder treatment. An end to minimum weight goals, of "out of medical danger" as a standard for recovery, and of "improving" as a measure of success.

For all patients, from the day of diagnosis, period.

November 10, 2008

I really don't want her to wind up fighting the same battle

A mom recently asked: How Can A Mom in Recovery Set a Good Example?

I told her I 'd ask the question of my readers:

"I've been dealing with body image and eating issues for the past 2 decades including a bout with bulimia when I was 17 (I'm now almost 32). Although it's been 14 years since I was able to break free from the worst of the unhealthy behavior, it's remained a struggle for me and I still consider myself "in recovery" rather than "cured". The times when I've felt most vulnerable to a relapse have been during the post-partum period when I'm trying to lose the pregnancy weight without crossing the line into unhealthy behavior.

I'm currently 8 mos pregnant with my 3rd and am really worried about how I can set a good example for my 6 year old DD. She's now aware enough to pick up on any negative messages I might send about food and weight. I really don't want her to wind up fighting the same battle I have.

Does anybody have suggestions for resources (aside from therapy which unfortunately isn't an option for me right now) to help me with this issue?"

November 9, 2008

Back from Chapel Hill

I was at the University of North Carolina over the weekend, invited to speak from the parent perspective at their 4th Annual Eating Disorders Conference. A brief overview:
  • Rented a snappy little car on Friday morning, and with the liberal use of GPS and XM Radio, enjoyed a gorgeous 4 hour drive south through the fall foliage.
  • Gas price range observed: from $1.99USD to $3.70USD standard unleaded.
  • Arrived to the hotel only to find a wonderful someone at the desk writing me a note and bringing me a cupcake and sweet potato scone by way of welcome: THANK YOU, DOREEN!
  • Went over my slides for the next day while waiting for my friend, Nancy Zucker (of Duke and "Off the CUFF" fame) who picked me up for dinner in her zippy little car.
  • Enjoyed a fantastic dinner and conversation with Nancy, trading ideas and collaborations, then we got terribly lost trying to find the hotel again - as I remember I was going on and on about the word "anosognosia" and we took it a bit too seriously!
  • Bright and early to check in with tech staff at the Friday Center who went above and beyond to solve my PowerPoint issues.
  • Recognized T.J. Raney purely by voice after only knowing him from AED conference calls this past year.
  • Learned loads from Dr. Cynthia Bulik's presentation updating the audience on research. I will post on this later.
  • Fascinating work being done to adapt CBT couples therapy when a partner has an ED.
  • My bit was scheduled for after lunch, giving me the advantage of a well-nourished audience.
  • I enjoyed doing the presentation. My title: The Secret Life of Parents: The other 10,050 minutes of the week. (In other words - what goes on outside the 50 minutes we're there at a clinician's office)
  • Had to wing it when my presentation notes got swallowed into the viewer halfway through...
  • Doreen made a pivotal guest appearance during the Q&A. Did I mention what fun it was to meet her in person and have her as part of the weekend?
  • Met lots of really interesting and interested people - will be talking about some of them in later posts.
  • Out to dinner with T.J. and Doreen. A full circle of topics around pizza - and a dissertation by the waiter on the group dynamics of dessert.
  • Left the hotel this morning at dawn to be home in time for my husband to leave on HIS business trip.
  • Said goodbye to the cute car, and to husband.
  • Made lunch.
  • Blogged.

November 8, 2008

Am I making you uncomfortable?

I forgot.

I forgot how odd and scary and weird I used to find the topic of eating disorders. I stopped realizing how tweaked out people feel when I talk about it. Oh, and I stopped caring.

I'm reminded of all this, recently, as I count up how few people in my non-ED-related life have ever actually engaged in a conversation on this with me. How many of even my family and friends haven't found time (interest) in reading my book. And how many of those who have read it shy away from talking about it with me.

Last night a member of my family called the topic "depressing." My book club (together for over a decade) finally read my book recently and (of the few who showed up that night) only one among them actually discussed any content in it.** One confessed that the group may have felt it was a "no win" situation to read it, and that the topic was so personal that it was like being a "voyeur."

I don't find the topic too personal, depressing, or off-putting. I find it interesting, cathartic, educational, and helpful to talk and listen and learn. I suspect those who are uncomfortable with it are still in the mindset of the illness as a shameful secret, an embarrassing vanity, a sign of troubling past.

I also suspect this is what the topic of breast cancer once did to people. Now people wear their pink ribbons with pride and in mixed company, there are marches and walks and survivor celebrations. There is also now, with breast cancer, a fierce network of fundraising and research funding and information sharing. No coincidence there.

I'm sick of the squeamishness over eating disorders and of mental illnesses in general. I'm sick of people being wary of the topic and very tired of feeling as if I am imposing when I bring it up. It's a brain. It gets bruised and broken. Most families have some people touched by it. There is treatment, and hope for improvement and full recovery. Get over it.

If you have a friend whose child has an eating disorder, I have advice for you. Ask. Read about it. Talk about it. Bring it up. Listen. Keep asking, reading, talking, bringing it up, and listening.

And if you have a friend who wrote a book, a tip: buy it. Read it. Talk about it. It's okay.

**P.S. I quit. (Book club)

November 7, 2008

The slippery slope

Weight restoration during eating disorder treatment isn't everything. It is, however, the fundamental first step. Want to have a better chance of full recovery?

The slippery slope: prediction of successful weight maintenance

"CONCLUSIONS: This study found that the best predictors of weight maintenance in weight-restored AN patients over 6 and 12 months were the level of weight restoration at the conclusion of acute treatment and the avoidance of weight loss immediately following intensive treatment. These results suggest that outcome might be improved by achieving a higher BMI during structured treatment programs and on preventing weight loss immediately following discharge from such programs."

November 4, 2008

CNS Response

A company called CNS Response has entered the ED treatment world, rationalizing medical treatment with the use of EEG:

CNS Response Provides Review of an Eating Disorder Poster

I've long hoped for better biomarkers and rationalization of all mental health care, and I'm glad to see it happening. As Sharon Begley said last year in "Putting Brains on the Couch" in Newsweek:

"psychiatry could stand to be dragged into … well, let’s start with the 20th century."

November 3, 2008

I'd vote for these kids!

My husband sent me this and then followed me around until I watched it:
Kids 'rap' the vote



How can one not feel optimistic about childhood after viewing that?

November 2, 2008

Readers read, now write!

What book should parents read first to understand eating disorders and support a loved one's recovery?

The F.E.A.S.T. site now offers a book review section, and a way for you to rate books you've read with just a click. It's anonymous (if you wish) and quick.

The book you got the most out of isn't listed? Submit it! There's a form for that on the page as well.

And yes, my book is on that list - my mother recommends it highly! (And I'd be honored if you read it, but my top vote is always for the "Help Your Teenager Beat an Eating Disorder" - it is the one book I think all parents need first and most, for patients of all ages.)