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President Signs Mental Health Parity Legislation!

Thanks to the thousands of Advocacy Network members who lent tireless support to our years-long effort to win enactment of legislation to end discrimination in mental health coverage. Today we won! After House passage of the Emergency Economic Stabilization Act today, 263-171, President Bush has at last signed mental health/addiction parity into law.
Click here to learn more about the Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act of 2008.

-Fantastic news worth celebrating!

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I love fall!

I love our annual trip to the apple farm, the continued but slowing scramble to farmer’s markets until they close shop next month, the cool nights and the warmth of a wood-fed fire pit surrounded by the deep and intoxicating smells that this season brings along with it. The cornstalks soon to be put out along with the vibrantly hued pumpkins, the trees’ deciduous leaves now changing in accord… it’s a sensory orgasm!

Last week seemed a bit more hectic, balancing home, family and a personal work-life in conjunction with extended family and friends for our annual Late Summer-Fall Equinox potluck. But all the work and preparations reminded me how vital it is reconnecting with others whose lives are busy like ours, whose children are growing and/or grown, and gather for one evening to celebrate the change of season, share a bountiful meal, taste new creations, revisit old favorites and maintain some deeper meaning within our lives.

A couple of weeks ago I was inspired to see BANA (Bulimia Anorexia Nervosa Association) holding it’s Global Dinner Table Conference (wonderful titled theme!) and extending efforts to educate and connect within the Ontario region with spokeswoman, advocate and eTalk journalist Ms Sophie Gregoire-Trudeau presenting a powerful personal journey through recovery from bulimia. Now as a healthy mother, wife and proponent for eating disorders she stated quite beautifully: “healing means reconstructing your notion of self, and who you are, and your connection with the world”.

BANA is one of a handful of grassroots organizations that actually carries out valuable, useful support and services instead of only allocating funds-donations and collecting data, along with having a vital partnership with the Local Health Integration Networks (LHINs) that is broadly interconnected with hospitals, medical communities, local demographics, schools and universities to align more effectively with clinicians and the broader public to reach those in need and provide support for families.

Another organization of note that has recently joined earlier this month at the “global table” is BEDA (Binge Eating Disorder Association) which can be additionally pivotal towards connecting those whose diagnosis is either “undefined” “unspecified” or completely overlooked towards the resources they need, and continue providing the educational and preventative services as well as highlighting probably the most common form of eating disorder more broadly present.

It’s aspiring to see such organizations take root and develop, gathering together as a unified front to fight an illness that has left far too many for too long uninvited or unheard to now join at “the global table” to come together!

 

 

“O Autumn, laden with fruit, and stained
With the blood of the grape, pass not,but sit
Beneath my shady roof, there thou may’st rest,
And tune thy jolly voice to my fresh pipe;
And all the daughters of the year shall dance,
Sing now the lusty song of fruits and flowers. “
– William Blake

 

I have to admit that I’m clinging to each last bit of the end-of-summer like a fool, but with the rain and chill today, it’s a bit easier to keep the Bodum filled and not mind too much. September seemed to happen so quickly, where did the time go?

The shortening of daylight and coolness of the evenings suddenly has me lugging out the sweaters and rummaging for fleece to accompany our early night walks by the lake, while still savoring the seemingly endless supply of heirloom orbs I’m basically giving away at this point before they rot- and with the onslaught of fruit flies scurrying to hold on and survive as well, that is a nuisance that won’t be missed.

Like most families with school-aged children, last week marked the beginning of another school year, which brings with it much excitement, anticipation, and sometimes, as for our daughter, a bit of anxiety when recovering from an eating disorder.

But that’s okay.

This semester she’s surrounded by many who know about her eating disorder, and are behind her, beside her, in their hearts and also working with her on a regular basis, like her Art Therapist, Yoga “guru”, ED therapist, nutritionist, pediatrician as well as close loving family and countless friends (teens are such magnets for camaraderie and energetic spirit… it’s hard to resist and really has been such a blessing!)

It’s so important to have that “net” of support during and throughout the recovery process. And while it’s not always easy to find and coordinate this type of collaborative care, let alone pay for and/or get insurance coverage for this extensive care- it’s so well worth the effort to keep plugging away, advocating for your son or daughter, and getting the “right fit” for both your child and also for you as the parent(s), caregivers, and extended family.

Numerous studies are aplenty regarding the effects of stress in our lives- stress is part of life for both human and animal, there is no denying this. Stress also has an evolutionary and survival component, but too much and not enough “down time” to recoup and rest and we all know what happens. Many of us also know how stress also can play a role in exasperating and/or intensifying levels of eating disordered behaviours in our loved one’s lives.

Dr Esther Sternberg was speaking on public radio last night while I was driving home from a messy, but productive day- for once! at the studio. And the conversation really got me itching to reread her book The Balance Within once again after the past couple of weeks going to numerous Dr appointments, back-to-school-shopping, noticing some tensions in our daughter’s behavior(s); and getting things ready for the start of the school year. It has been stressful!

It was interesting to listen to Dr Sternberg talk. She’s incredibly intelligent, grounded, but also very human. She’s been called a “scientist’s scientist” as she’s a bit hesitant towards all the overkill-joy on the Self Help end minus a balanced critical and logical analysis of what we’ve been learning, and do know about human cells, the brain, genetics, neural circuitry, etc. currently. And how technology, continued research/study has opened up so much to illuminate on these previously charted as well as uncharted seas, so that we can begin to really delve deeper within a broader understanding behind why you might feel like shit, or are swimming endlessly in “the blues”, and just can’t deal with all that stress, dammit!

I think this past couple of weeks reminded me of how sometimes the simple things are really quite wonderful. Listening to the shared support of other parents, sufferers who really have climbed that mountain of ED-Himalayas and stuck a “Fug You ED” flag on the peak, then courageously climbed down to live full, healthy lives. Dr’s and clinicians who truly connect with you and your child and actually “get it”, both what your child is grappling with, yet not belittling their struggle, or as a parent/caregiver, your own; and continuing to make that commitment towards supporting your child’s recovery, even when things seem temporarily “stuck” week after week.

Our daughter had a wonderful half-week back rejoining with friends and classmates, she loves her classes, new level teachers and has taken on a couple of additional social-activity/clubs this semester to fill in for field hockey, cross-country and ballet. And while she’s very determined to get back to dance at some point, she’s also realizing what other talents she can nurture and cultivate while her body and mind continue to heal. A time for all things in good time.

shanti

Hope is not the closing of your eyes to the difficulty, the risk,or the failure.

It is trust that-If I fail now -I shall not fail forever;and if I am hurt,I shall be healed .

It is trust that Life is good, love is powerful, and the future is full of promise.

– Anonymous

 

 

 

 

Eating disorder recovery, like gardening, is most definitely a labor of love.

And while I’ve been gardening as long as I can remember (although when I was younger, I absolutely detested those summers in the “country” toiling, weeding and watering; the only salvation was my G-Ma’s raspberry pies- and oh, how we grumbled and complained! Such indentured servants to the land we were; little did we know the lessons being planted early on by our wiser parental-elder units indeed!) with digging and transplanting in country soil, urban community plots, studio rooftop gardens, CSA worker-share’s- you name the place, I’ve always found a way, even on a low budget, to squeeze something beneficial, tasty and aesthetically pleasing into the ground our family happened to be living on top of.

With only two years passing since our daughter was diagnosed with anorexia, there are many things we are still learning together about this illness and how to best tend-cultivate to our daughter’s support and recovery. But we have definitely learned so much since she was diagnosed, what works, what definitely doesn’t, when to move on, regroup/restrategize, and also when to let things be, step back, and also knowing when to step back in when needed. Quite like tending to a garden plot I’d say.

And I can’t but think as I’m scrambling to let the frittata cool, get the gazpacho out, toss the pasta with fresh tomatoes from the garden… we have ten or twenty arriving? ugh! Hubby’s tending the proverbial flame to finish the tandoori chicken and burgers- that some of the best lessons are learned from the garden.

__________________________________


For the garden of your daily living, plant three rows of peas:

  • Peas of mind
  • Peas of heart
  • Peas of soul

Plant four rows of squash:

  • Squash gossip
  • Squash indifference
  • Squash grumbling
  • Squash selfishness

Plant four rows of lettuce:

  • Lettuce be faithful
  • Lettuce be kind
  • Lettuce be patient
  • Lettuce really love one another

No garden is without turnips:

  • Turnips for meetings
  • Turnips for service
  • Turnips to help one another

To conclude our garden, one must have thyme:

  • Thyme for each other
  • Thyme for family
  • Thyme for friends

-Jessica Prough

 

Have a wonderful and abundant Labor Day!

… then shouldst have it for gingerbread*.   -William Shakespeare

      * Or in my case fresh carrot cupcakes

                                  _______________________________

Summer is winding down and it’s been a fantastic couple of months.  Gracious thanks to those of you who continued to email throughout the summer (for almost a month we were too deep in another world to even want access to the internet) with a wealth of supportive and heart-filled thoughts.  I was touched beyond words that can even begin to express my endless appreciation to you all.  And though I didn’t get a chance to respond to everyone in kind as of yet, I just wanted to share, once again how much this has meant to me and our family– merci!**

On another update-note, Drs Daniel le Grange and James Lock will be conducting a one and 1/2 day FBT-Maudsley training targeted towards adolescents with eating disorders in Portland, Maine: September 23-24th.  What a wonderful opportunity to continue to utilize family-based, supportive and evidence backed treatment practices that integrate all those involved within their loved ones’ care and recovery.  Mary Orear, executive director of Mainely Girls is sponsoring this event, for further information click on the highlighted link.

Hope all of you had a restful and recuperative Summer– and looking forward to reconnecting more regularly soon!

-shanti

 

With Dr Daniel leGrange taking his sabbatical in Australia there has been a hub of conference presentations and various skills-based workshops  and training for implementing the Maudsley Method into eating disorder treatment and care as well as informing and assisting families and caregivers of utilizing this Family-Based approach to help their loved one.

The collaboration and gathering of these individuals, families and professionals probably could not have arrived at a better time since Australia has recently been highlighting an increase of younger children diagnosed with anorexia

On a positive note, one Sydney mother describes their experience using the Maudsley Method for their adolescent daughter as valuable and further stated, “It’s not a quick fix. But we’re absolutely stronger as a family. We’ve always been strong.”

Go Maudsley!

 

             Interesting use of metaphor…

                       are you taking care of your Earth Suit— I hope so!

            – Bonne Nuit

 

The Klarman Family Foundation Grants Program in Eating Disorders Research whose long term goals are to accelerate progress in developing effective treatments for eating disorders has listed their 2008-2010 Award Recipients of outstanding scientists and researchers in the field :

 

  • Wade Berrettini, MD, PhD – University of Pennsylvania – Genome-wide Association Study of Anorexia
  • Catherine Dulac, PhD Harvard University – Genetic & Epigenetic Pathways Underlying the Neural Circuits of Feeding Behavior
  • Guido Frank, MD – University of Colorado Denver – The Brain Reward System Across the Major Eating Disorders & its Relationship to Genotype
  • Angela Guarda, MD – John Hopkins University School of Medicine- Role of the Cannabinoid (CBI) System in Bulimia Nervosa
  • Alvaro Pascual-Leone, MD, PhD – Beth Israel Deaconess Medical Center – The Role of the Right Prefrontal Cortex in Binge Eating Disorder: A Translational Research Study Using Transcranial Magnetic Stimulation (TMS) & Functional Magnetic Resonance Imagery (fMRI)
  • Maribel Rios, PhD – Tufts University School of Medicine – Examination of the Role of Brain-Derived Neurotrophic Factor in Binge Eating Disorder
  • Leslie Vosshall, PhD – The Rockefeller University – Identification of Novel Genes & Circuits in Animal Model of Binge Eating Disorder
  • Jeffrey Zigman, MD, PhD – U.T. Southwestern Medical Center – Mechanism by which Ghrelin & Orexin Defend Against Depression & Anxiety

 

Real scientists and genuine clinicians doing real work to make continued strides towards improved treatments, diagnostic tools, preventative modalities in treating eating disorders more of a reality along with further educating/training the medical community and wider public– CONGRATULATIONS!  Many of us wish you full-speed ahead as well!

-salut

 

 

There are few individuals who truly rise to a level of integrity, experience, commitment and compassion when it comes to researching and treating eating disorders that I can honestly say are worthy of note, let alone far too few dedicated and wisely seasoned clinicians available for sufferers and families assisting and caring for loved ones to have equal and affordable access to.   Dr Daniel le Grange at the University of Chicago is most certainly one of those individuals.

For parents who have younger children or adolescents suffering with an eating disorder you are probably already aware how vital early diagnosis and intervention are to restoring your child’s health.  Many families and parents are unfortunately still treated as the “problem” or blamed/shamed into believing that they “caused” their child’s eating disorder, and sometimes, worse yet, doctors don’t even take seriously the early warning signs of eating disordered behaviors as well as weight loss in younger patients and dismiss the parents concerns despite the “highest concentration of most sufferers of Anorexia Nervosa being in the adolescent female population”– time is not on anyone’s side when you delay diagnosis and immediate treatment.

And treatment programs along with many clinicians still leave the family aside and ignored vs being utilized as a vital resource in assisiting and collaborating within helping their child recover, and working with as well as healing the entire family unit.  This makes many of us parents quite irate since we know our children best and were the first to have noticed the drastic changes in our child’s behavior, took initiative in researching treatment options/providers, and then continue to take action, resources and advocate for our children while waiting for many in the medical community and insurance industry to finally wake up and begin implementing true evidence-based treatment strategies that work instead of constantly reinventing the wheel, over and over…

Parents, Families/Partners and Caregivers of Children and Adolescents suffering with this illness please take heart, find continued reassurance, and be re inspired by reading Dr le Grange and Dr Loeb’s Early Intervention in Eating Disorders as well as Dr le Grange’s Treatment Model for Eating Disorders in Children & Adolescents :

 

  • Parents are a RESOURCE in helping the adolescent
  • Most parents CAN help the adolescent
  • Parents have SKILLS to bring to treatment
  • Therapist leverages parental skills and relationships to bring about change
  • FBT-Family Based Therapy is the only evidence-based treatment shown to be efficacious and cost effective

 

On the Centre for Excellence in Eating Disorders (CEED) website, where if you are an Australian native they are also providing FBT and eating disorder treatment study for families free for participants, which they did here in the states at the University of Chicago a few years back.

Some day Eating Disorder Treatment will be this good everywhere — until then, keep fighting the good fight and don’t give up!

-shanti

End Health Discrimination
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