Ameliorating Reward Seeking Behavior and, by extension, Eating Disorders

A newly published study in Nature by researchers at the University of North Carolina at Chapel Hill reveals that
 
using a combination of genetic engineering and laser technology, [they] have manipulated brain wiring responsible for reward-seeking behaviors, such as drug addiction. The work, conducted in rodent models, is the first to directly demonstrate the role of these specific connections in controlling [emphasis mine] behavior.

 

The UNC study, published online on June 29, 2011, uses a cutting-edge technique called “optogenetics” to tweak the microcircuitry of the brain and then assess how those changes impact behavior. The findings suggest that therapeutics targeting the path between two critical brain regions, namely the amygdala and the nucleus accumbens, represent potential treatments for addiction and other neuropsychiatric diseases.

Interestingly, I just completed a course on the brain offered by Dr. Lee Ryan at the University of Arizona as part of the Humanities Seminars Program.  During her three hour lecture with slides on decision making she illustrated the reward path of the brain as beginning in the ventral tegmental area (VTA) that is known for pumping out dopamine that is transmitted to the Nucleus Accumbens and from there to the Prefrontal Cortex.  By infusing minute doses of heroin directly into the Nucleus Accumbens of a rat, researchers observed an increase in the degree of dopamine and its course from the Nucleus Accumbens to the Prefrontal Cortex.  Researchers then electrically stimulated the NA and obtained similar results.  (Once her slides are on line, I'll link them here to illustrate the experiment with the rats.)

The researchers also determined in work with the animal that anticipation of the reward is as good as the reward itself.  This illustrates the increased likelihood that someone who is or was addicted to a substance (heroin, e.g.) or a behavior (such as gambling or binging and purging) will begin to anticipate the reward and indulge in reward seeking behavior as a result unless they have managed to learn how to modify their behavior in this example of a decision making process.

That decision-making process occurs in the Frontal Lobes of the brain where something known as  the Executive Function occurs.  The brain, through training the results of which can become a habit as well, weighs the pros and cons of seeking the reward and hopefully makes the decision, in this case, to reject it.

Research has shown, too, if there is damage to the orbitofrontal cortex, these behaviors to avoid reward are dampened and risk taking as well as reward seeking are increased.  This damage can occur as a result of a stroke.  It would seem (although I have not seen any research yet about this but intend to tap the researching skills of a friend) that starvation during anorexia or electrolyte and therefore chemical imbalance due to binging and purging,  could also lead to the lessening of the positive effects of Executive Function because the brain is starving.  And, of course, genetics can play a role here, too, by increasing likelihood that a person's stimulus/reward system may need balancing through, for example, behavioral modification or medication among other possibilities.

Again, the goal is to develop a habit to reject a stimulus that is harmful.  The researchers in the first report mentioned above are examining ways to interrupt this reward seeking behavior, as well.  For those who for whatever reason simply cannot stop that reward seeking behavior once it begins, the work by those at UNC may lead to a way to stop it.

And, again, a fascinating look at all of these processes can be found in the book Incognito by David Eagleman.  This linked NPR report gives one a sense of the book and includes some material from the first chapter of the  book.

P.S. After reading and then thinking/writing about Brain Over Binge ( Kathryn Hansen's book ) is anorexia another disease or another version of the loss of the ability of a person's executive function to govern eating behavior but in anorexia's case something goes awry in the brain's wiring so that in a perverse way starvation feels good as would a narcotic? 
P.P.S.  After writing the above P.S., Kathryn Hansen sent me a link to an article about the study by Dr. Walter Kaye and his colleagues that indicates those with anorexia feel less anxious when they do not eat; some sort of aberration.  So in a sense starvation does feel good or at least less fear inducing........
And, another PS - Here's an article published in the New York Times on the same subject elaborating on the development of addictions and the brain receptors involved.

The Four Agreements - underpinnings to a better life

We subscribe to Inside Tucson Business, a local weekly business newspaper.  The June 24, 2011 edition carries an article written by Kathy Hibsman in the Women in Business section in which she reflects on the Toltec Four Agreements.  This link provides the full text of the agreements, as well.

I find it worthwhile to review these periodically and the book written by Don Miguel Ruiz sits on my shelf.

Agreement 1:  Be impeccable with your word.

Agreement 2:  Don't take anything personally.

Agreement 3:  Don't make assumptions.

Agreement 4:  Always do your best.

A reminder to those who tend towards perfectionism and get tangled up in it (like myself), doing your best does not mean doing something perfectly.  A wise Al-Anon saying is Progress, not perfection.

Guest Post by Marjie Ruth - Recovery is a Process

"It is good to have an end to journey towards; but it is the journey that matters in the end."

 ~ Ursula K. LeGuin

Dear Family & Friends of the Eating Disordered;

The topic of recovery is one that is almost always on many of our minds in one capacity or another. So, what is recovery? Recovery is what we all want for our loved ones. We want them to get past their addictive behavior, to regain their health and happiness, and to rejoin life as a fully functioning and productive person. For some of us recovery is thought of as simply getting things back to the way they were before we ever even knew about the disorder or suspected it might be a possibility. Webster's tells us that recovery is to "regain a normal position or condition [as of health]". Yes, to get back to normal--that is a most succinct way of putting it.

"Get back to normal". Those 4 words sum up the burden that has been in our hearts and is the bottom line when the maelstrom that is in our minds comes to rest. Some of us, after lying awake in the dark hours of the night and crying quietly into our pillows, know that it is the prayer we whisper through clenched teeth: "Please, please make things normal again!".  But everyone who has studied even a little psychology knows that the word "normal" is a nebulous term at best. Normal is often defined in the eyes of the beholder. What's normal for one family might seem quite ludicrous to another. And the key thing for us to remember is that the eating disorder was developing and occurring even when we thought everything was just fine, normal. Are we just asking to go back to a state of blissful ignorance or do we really want recovery?

Another stumbling block when we talk about recovery is that we are often thinking in terms of a cure. We've cured polio. We're searching for the cure for cancer and the common cold. Is there a cure for an eating disorder, for any addiction? Because many practitioners use the disease model when talking about and treating ED's, we tend to think that a cure is the ultimate goal. But the disease model for mental illnesses and that for physical ailments have some inherent differences. There is no invading virus or bacteria to be isolated and eradicated with an ED. Even the cause of an ED is difficult to cull down to any one thing as it appears to be the result of a whole slew of mitigating factors: genetic predisposition, environmental & experiential factors, hereditary issues, triggering events, hormonal levels, etc. etc. A cure would be great for that would mean the possibility of a vaccine...but neither seem within the realm of possibility at this point.

So, again, what is recovery? If not necessarily a return to the state before we were aware of the disorder and if not a cure, what is left? Recovery is a process. It is a process with the first step being admitting to the disorder and one's powerlessness against it. That might seem like overstating the obvious to those who blanch at the holocaustic appearance of the anorexic or are sickened by the the sight of the binging bulimic and the sound of the purging aftermath. But for the person mired in the disease, it is the first and often most difficult step in a long, long struggle. Denial is the self-preserving force of every addiction. An addiction begins slowly (without the victims' having any intention of becoming addicted) and innocuously hidden in a facade of "this feels good & I can control it". It's only dabbling in a potentially self destructive behavior at that level. By the time the tentacles of the addiction have penetrated and ensnared the mind of its victim, it is so much in control of their physical and mental being that its very nature does not allow for recognition of itself as the invading enemy. Instead, it is seen as the very essence of necessary normal, as needed for life as air to breath. For most addicts the addiction feels to them like that which is keeping them going, while everyone around them watches in horror as the addiction gradually destroys its primary victim.

If you can fathom all of that, you can begin to understand why the recovery process is so very tough to initiate. We often talk about the need to "hit bottom" before real recovery can begin. This is an outsider's way of describing what appears as an addict's downward spiral until, in looking back, we can see the point where they finally began to fight against the disorder, that point where they "bottomed out". This is not something that can be orchestrated by others and is unique to each individual just as each of our mental/emotional constructs is unique. For some, the realization that what they are loosing due to the addiction is greater than what they are getting from it will come sooner--while for others, it may take months or years with increasingly damaging forays into the depths of the disorder. And, most sadly, there are those who will loose their life to the disorder without ever seeing the ED clearly for the killing monster it is. This is true of all addictions.

But, if that process towards recovery can get started, there is the hope (and it has happened for many) that it will progress through a series of levels, each one bringing the person closer to a healthy and functioning place in their recovery process. The 12 step model lays out the series of prescribed phases to further this process. The AB Anon handbook points out very clearly that the first two steps (#1-admitting to being powerless against the addiction and #2- coming to believe that a Power greater than self can restore sanity) are both the most critical --being those upon which all further recovery is predicated--and the most difficult.

Once this process has begun, we--the families and friends of the addicts--must address how we are to deal with the otherdreaded "R" word: relapse.  For those of you who have been through it already, you know how once you learn of the relapse your stomach immediately knots in its very pit, and you feel that sinking-into-a-black-hole feeling of panic all over again. And familiarity certainly does breed contempt in this case. We are nearly traumatized to be revisiting that most horrific of emotional places that we never ever wanted to be in the first time around and had spent countless hours and probably dollars working to get away from forever. I can say nothing to take away the frustration and fear that any one of us would naturally experience. But I can offer some assurance by pointing out that relapse often occurs (according to the AB Anon handbook) because either of the first two steps of the 12 step process had not been fully internalized and dealt with. Think of the analogy of learning to ride a bicycle. Help is required for the first time ride, usually in the form of a parent's firm hand on the rear of the seat while running along with the tentative peddler. The sense of balance is something that must be learned from experience as it really does feel impossible and dangerous to the untrained rider. Training wheels (liken those to residential treatment or intensive therapy) can give a feeling of what riding a two-wheeler is like. But take off those little wheels (leaving the residential setting, dealing with situations outside of the therapist's office), and it is something else indeed. And we've all seen the child who continues to peddle & do just fine when, unbeknownst to them, we have let go of the seat. But then, when they look back and realize they are on their own, their fear overtakes them and they wobble and fall. So, too, an individual can seem to have been doing marvelously in therapy, and we are filled with expectations (recognize the word & recall the danger?) of better things to come. But life assails them, confidence flags, and the urge to resort to the addictive coping mechanisms is screaming in their minds. Relapse can be horrifying and ugly for everyone involved, but it is vitally important that we, the friends and family, do not communicate despair to the person in the battle against the ED. Just as you dusted off the young rider while offering words of praise for what they had undertaken so far and encouragement to give it another go round, so too we must be there expressing love and calm understanding to encourage our loved ones that we understand what a difficult battle they face and that we realize that set backs will be part of the process.

And that leads us to the importance of our own recovery. While we can not do recovery for anyone else, we can not effectively be supportive if we have not worked on our own recovery. And how do we do this? By continuing to increase our understanding of the recovery process including the realities and the possibilities, and accepting that it is all out of our control. Our recovery means coming to recognize and deal with our own emotional baggage about the ED: our anger, fears, frustrations, hopes, worries, and going through the grieving process in order to reach acceptance. It means continuing to work at learning how to cope with while not contributing to the addictive behavior. It may mean working on issues of our own like a tendency towards perfectionism or a need to be in control of others, for example. Recovery for us means learning how to listen, how and when to let go, how to establish healthy boundaries, and nurturing our lives and relationships apart from the ED. While we might have started out thinking that recovery is all about making someone else well, hopefully now we are coming to realize that it is more about understanding the process they will have to work through while applying the same process to our own lives.

To paraphrase the opening quote:

When we understand the recovery is not something to be achieved, but rather a way to live, than the process will become our journey.

Marjie Ruth
sruth1@tampabay.rr.com &/or MarjieRuth1@gmail.com

(727)244-9011 (c)P.S. Wow, congratulations on making it this far!! I know this was a long email...thanks for bearing with. Pls feel free to share this with anyone who might be interested. Do include my email address so they know who to blame for all of this verbosity. If you've received this and would rather be off the list, write back and just say "remove". I'll understand. Questions or comments? Send those my way also.

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.

Reflections on Taking Care of Myself - Signals that I'm Not

March 31 2019

My visits to my therapist have become less frequent for the most part.  I'm happy about that.  Her assessment with input from me is a reliable barometer of how I am doing in my battle (and it is a battle within) to separate myself from the what my loved one is doing without losing or demonstrating that sense of the unconditional love I have for my loved one.

One of the questions I'm always asked is something along the lines of "what are you doing for yourself?"

My list includes things like spending time with my husband, lunching with friends, taking a class, reading, working in the yard, not getting up at the crack of dawn to make an early morning board meeting, and seeing a movie.  The list used to include running but since a bad fall followed by x-rays of my neck that revealed a problem, I've turned to hiking/walking for my exercise.    Another activity is adding to this blog.

Since 1977 when I started running by putting on a pair of leather white and red swooshed Nike's, I've kept a running journal of sorts.  My entries usually included the miles I'd covered that day.  If I felt sick or sick enough not to run, I'd mention that.  If I was injured, I'd mention that, too (and not run).  I've had three injuries that got in the way of my running.  The first was a Morton's neuroma that was easily fixed with a wider toe box, lower dress heels, and inserts with a special pad.  I've successfully stayed away from surgery.  The second was IT band syndrome in 1981 that came about because I ran a marathon arranged to run in the direction of traffic so the cant of the road torqued my knee.  The third was more recent.  I wanted to run up Mt. Haleakala in 2001.  My training included miles uphill on the road up Mt. Lemmon here.  My plantar fascia rebelled.  We didn't go anyway because the run coincided with the awful events of that Fall and our flight was grounded.  

I worked very hard and continue to work to monitor my body in many, many respects.  As I've written elsewhere, my running brought me back to health.  I firmly believe that exercise, if incorporated thoughtfully and carefully, is very important.  I know I feel better having been out in the fresh air and sunshine.

Some folks will include things like the shoes they wore, the terrain they ran.  I'll usually note trail or a specific place like a nearby park that has a great walking path or the track when I used to do time workouts to increase my speed when I was racing. 

I've noticed that a great barometer of my focus on the exercise aspect of my life (which my parents ingrained in all of us at an early age as a means of keeping healthily fit) is not only exercising but also logging that exercise.  A member of the ultrarunning community (of which I used to be a member) created a challenge called the Million Mile Ultra and invited people to log their mileage.  I've been doing that since 1997 although I covered many more miles per year before that simply because I was always in training for an ultra or of our local trail runs that are calendared from September through May here.

One day, after first being startled to see that I haven't been keeping up with totaling my mileage in my journal,  I checked into the Million Mile site and was shocked to see that I had not logged a monthly entry since last August.  This lapse happened a few years ago when my loved one was failing rapidly and just getting out was an effort.  That lapse was three months.  This time the lapse was nine months.  I like making entries on this site because in the past it kept me motivated.   For me there's no competition involved; rather, it's a signal to several people on the list who I have known for a long time, that I'm still out there and somewhat kicking.

However this time, not only was there a lapse in logging, there was also a lapse in posting to my journal.  Fortunately, I am now am bicycling several miles once a week but thanks to many days of not posting in my running journal, there were weeks at a time when I might have put one or two entries if that.  Most lapses occurred early that year and recently I've gotten back on track.

So...... why?  I attributed some of the lapses to being on more celexa than I needed and therefore I simply got lackadaisical about it all.  This lackadaisical feeling over-ran several activities which is why I decided to reduce the dosage while working with my doctor about it.  I eventually quit celexa altogether and now take a low dose of buproprion.  Like many people who start to feel okay again, it's not clear to me that I won't feel okay if I go off the meds.  At least I recognize this fact.  There are those with anosognosia who don't recognize this fact and get into serious trouble when they quit their meds.  [

Reflecting on all of this, and I think my therapist will concur, I get sucked back into the life activities of my loved one when my loved one loses ground.

I've continued to be a member of the therapeutic team and appreciate their including me for I can offer insight on some of the behaviors everyone is observing.  I've been a welcomed member of the team now for ten years.  In the past it was a struggle to advocate effectively because it was so difficult to get key people to listen and take action.  Now the team is more tuned in yet their resources are severely stretched.  For me, knowing what is going on obviously has its pluses and minuses.  Good news is wonderful; bad news is so saddening. 

I continue to monitor myself closely.    I've kept close to my heart the expression, hope for the best; prepare for the worst.  The reader will notice which phrase I put first.

One day at a time.

Finding the Root Cause - Funding is Critical

I know that many of us are still inextricably involved in finding an eating disorder treatment that works specifically for our loved one.  I say specifically because although there are indeed commonalities -- e.g. the effects of poor or lacking nutrition (AN) and fluctuating hormones and electrolytes (BN) on the brain -- I've observed that each person affected also has her/his own "package" of other factors that trigger the illness.  Like snowflakes, I do not think any of us who are recovered from or still battling one or more of these illnesses are identical although we have genetic similarities, especially family members.

I also firmly believe that ongoing research into the etiology of eating disorders is extremely important.  For this reason, I continue to highlight the work of Dr. Walter Kaye and his team at the University of California, San Diego.  According to Dr. Kaye, and in response to a question I recently posed to him about the news this week I blogged about involving the twins with genetically caused symptoms, he noted and I quote:

In collaboration with our colleagues at Scripps in SD, we are in fact pursuing exactly such studies.  That is whole genome sequencing on families with 2 individuals with AN.   Because of the expense (approximately $10,000 per person) we only have funds to do a few families as a pilot study which is currently being done.    However, we do have a large number of such families from the Price Foundation studies.   Other recent studies from our group suggest that people with AN may have many different patterns of rare gene variants that affect certain brain pathways.  Thus it is likely important to study a number of families to see if different patterns of genes affect similar circuits.  But we do not have funding to do many families.  .... I think such a study could have a major impact on understanding ED.  We have the samples and the technology - all we need is the funds to do this.  ....  Our sequencing work is in progress.  

I know if I had significant resources I'd contribute to this study.  By putting this "out there" (a friend of mine firmly believes and I've seen evidence that by putting such thoughts out in the universe, results come to pass), I hope this call will be picked up by someone who does have the resources or who knows someone who does, so this study can proceed post haste.  

Gene Map reveals glitch affecting serotonin, dopamine and noradrenaline levels

The news yesterday included an exciting development in the world of genome mapping.  A parent (!) pushed doctors to map the genome of their daughter whose physical difficulties had progressed from movement problems (a dopa-responsive condition) to night coughing and wheezing.  When her genome was teased apart by doctors at the Baylor Human Genome Sequencing Center in Houston, they  "....discovered a genetic mutation that lowered her body's levels of another brain chemical, serotonin, as well as dopamine."  This news was published in Science Translational Medicine.

This NPR article carries the most information I've seen on this news and indicates that the twins inherited this mutation from both of their parents.  The result was low levels of not only dopamine, but also serotonin and noradrenalin.  The teens are receiving a supplement called 5-HTP, a serotonin precursor as well as L-Dopa. Read this article on 5-HTP as it can be harmful to your health.

When I googled this news, I found countless newspapers had picked up this story and published it.

As one who recovered from anorexia/bulimia (and who is taking celexa and wellbutrin, medications that address these deficiencies) and whose daughter is still fighting it, I'm intrigued by this discovery and I wonder if this gene sequencing result will lead to the identification of a similar mutation in the genome of many young people who are among the at least 4000 samples taken by Dr. Walter Kaye's team at UCSD that is studying eating disorders. 

Here again is another example of why we all must focus on the reality that the ailment of the twins in the newspaper story and of others whose genome reflects mutations of this nature is biological in nature, with physical symptoms needing quality and equitable medical care regardless of what the diagnosis is.

Keeping Track of a Loved One's (or yours) prescriptions

The Critical Path Institute here in Tucson has developed a terrific tool to assist you in keeping track of your prescriptions, supplements, etc.  This tool is found at the AZcert website.  If you click on Online Medicine List Generator and complete the form, you'll be able to print a list to carry in your wallet or hand to your doctor.

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.

Update on Special Needs Trust/Financial Assistance for a Loved One with an Eating Disorder

I just received this link about a recent publication of the Special Needs Alliance for the benefit of a Trustee of a Special Needs Trust.

These trusts can be set up for loved ones who will need supplementary financial help during their lifetimes.  These trusts are designed so they will not interfere with continuing eligibility for public benefits.

I've written about Special Needs Trusts in an earlier post and you can obtain more information from the Special Needs Alliance Website.

Causes of Eating Disorders - another angle

I'm still reading The Emperor of All Maladies.   The subject - cancer - has nothing to do with eating disorders but the science so well presented as a backdrop to the progress against cancer has been absolutely fascinating and a great help to understanding how researchers go about identifying how genes play a major part in the susceptibility to different kinds of cancer as well as the treatment of different types of cancer.

After years of reading studies and books, participating in family groups, listening to speakers at conferences, etc., rather than becoming an advocate of one method or another, I've become more convinced that eating disorders, while related to eating (or not), are different just as breast cancer is different from lung cancer is differed from colon cancer. 

Last fall, after attending the NEDA convention in New York City, I mused that perhaps the term eating disorder is a misnomer and in fact should be called 5-HT disorders.  The work of Dr. Walter Kaye and others certainly points to the probability of anorexia and bulimia being psychobiological illnesses.  Anxiety and methods to quell it are certainly part of the picture.  But perhaps there's even a more basic explanation for the underlying development of eating disorders.

The study that Carrie Arnold highlighted recently explores this idea.  Dr. Donald Dwyer has proposed that anorexia is "primarily a metabolic disorder caused by defective regulation of the starvation response, which leads to ambivalence towards food, decreased food consumption and characteristic psychopathology."

I'm excited by this study because someone has stepped out of the box and looked at anorexia in a different way. 

Suppose all of the disorders within the title "eating disorders" are indeed endocrine based and that each person's endocrine/neurophysiology (I am sure there's a scientific term that would encompass this) is affected by their genome.  If the reader clicks on each of the areas of the body listed in this linked definition, one will see the number of different biochemicals secreted and how they are postulated to affect the body/brain in some way.  I find my mind boggled by all the interrelationships and in awe of my body's ability to stay in balance (reasonably, anyway).

Looking back over my musings these last few months and drawing from, admittedly, a very small cohort of two people who are members of a family that has demonstrated issues with eating over the years, I'd like to reiterate a couple of other thoughts that might be related to the endocrine system and tie into Dr. Dwyer's research.

I and my daughter both began our eating disorder journey with bulimia when we were in high school, about the same age, and having entered puberty about the same time.  Both of us progressed to anorexia within a couple of years, she more entrenched than I ever became.  Two other family members struggled with binging; one still does.  Many in our family have also dealt with depression and anxiety.

Interestingly, and I'm really curious about this and how prevalent it might be in the general population of those with anorexia, both my daughter and I also failed to thrive while being breastfed.  My mother and then I needed to gently flick our baby's heel to get us to wake up and continue to eat.   In an earlier piece I've written about oxytocin and how this hormone, present in breast milk, can cause a baby to drowse off without satisfying its need (not desire, but need) for enough food to maintain its weight and grow.    I do attribute my recovery partially to my decision to get massages which also trigger the release of oxytocin in my body.  Is oxytocin deficiency part of this picture?

After I met with Martie Fankhauser several months ago to learn more about nutrition, one of the things I learned is that there are also serotonin receptors in the intestines.  Interestingly, Harriet Brown wrote an article discussing this neurotransmitter and its presence in the gut (the body's second brain) in 2005 and how it is implicated in GI disorders.  Too much serotonin in the gut can lead to nausea and vomiting. Does puberty have something to do with this; or more specifically the hormones that flood adolescent systems?

So, I am asking myself is bulimia a separate illness caused by too much anxiety that leads to too much serotonin that leads to the propensity to vomit?    I also ask this question because I recently came across a disorder called Cyclic Vomiting Syndrome  and wondered if there is a connection since anxiety is one of the factors that seems to cause it.   Can bulimia then progress to anorexia once the endocrine system is knocked out of balance by the binging and purging that's common with this illness?  Bulimia certainly can become a habit - an addiction -  in and of itself, as well.

The literature and media has focused more and more on the prevalence of eating disorders in older women, as well.  Does perimenopause have something to do with this?  Hormones, again.  Do men also experience this but perhaps do not talk about it?

Finally, one must take a look at BED - binge eating disorder.  What causes a person to eat what others would consider "....an unusually large amount of food who also feels out of control while eating it?"  Dr. Cynthia Bulik is a well-known and major researcher within the field looking at eating disorders.  She has written the book Crave - What You Binge Eat and How to Stop.  One could postulate that even this eating disorder has an underlying endocrine system basis.  If anorexia, according to Dr. Dwyer, is the result of "a metabolic disorder caused by defective regulation of the starvation response" [see above for quote source], then why could not BED be due to another yet related metabolic disorder?

I hope we will soon begin to hear more about current research as scientists are collaborating and presenting more of their work.  We need more conferences that invite the different disciplines to present what they are uncovering about our neuro/psycholbiological systems. Twenty years (the time it used to take to get this kind of information to the patient and his/her team) is too long. 

A look at eating disorders and starvation - something new/something known

I'm going to simply post links to two articles and hopefully disseminate this information to an even  broader audience.

The first article is by Carrie Arnold and appears in her blog Body of Evidence in PsychologyToday.com

The title is, "In anorexia, separating mind from body is impossible."

The second article is by Dara Moskowitz Grumdahl and appears in the on-line June 2011 issue of experiencelifemag.com.  It's titled, Food Crazy. 

Carrie's piece points to a radical new idea about anorexia.  She also reiterates the truth often overlooked by many in the medical profession as well as the health insurance industry - the brain and therefore the mind is part of the body.

Dara's piece reminds the reader of how vulnerable our bodies are to the effects of starvation and what happens when we consume less than our bodies need.  Remember that the brain alone needs 500 calories of glucose to operate effectively yet many so-called diets hardly provide much more than that!!!!