Coping with Mr. Toad's Wild Ride and Guest Post on Coping by Marjie Ruth

One of my favorite books when I was little and again when I read it to my children was and still is The Wind in the Willows by Kenneth Grahame.  I so enjoyed the parts where I could mimic the car and explore the feelings on the page with my children.  In fact, I'm tempted to go pull it off the shelf and read it again - so many "human" emotions in that story.

Depending on one's point of view, Mr. Toad's wild ride describes mine these past few years.  It also describes my loved one's whose experiences have often seemed like a wild ride from which she could not get off.  She is and has been learning techniques to help her deal with these things.  As I've share here in other posts, so have I.

My posts usually focus on the parent and this one is no exception.

I was very fortunate to connect with a therapist who has worked steadily with me to learn how to set boundaries and, as well, use behaviors to keep myself safe in a variety of situations.  By safe, I mean in the sense of taking care of myself.  Things have been pretty rocky for several years now and since my mother's death almost two years ago, I lost my bearings a bit until I started sessions with her and later when I finally made the decision to use a medication that has helped me in my quest to stay grounded, no matter what.

I am delighted to synchronize my current state of being with a post by Marjie Ruth, whose earlier guest post on Boundaries received a lot of visits both here and on other sites.  This one is about taking care of oneself, specifically coping with so much that comes along when a son or daughter is overtaken by an eating disorder or other brain disorder/mental illness.  

Here's what she has to say:

This week's topic is coping. It is the fifth (the real 5th ~ sorry about the goof in last week's Subject line of the email) in our series of "C" words, and a vitally important step in our struggle to come to terms with having an ED in our lives. A huge facet of coping has to do with caring for ourselves. And in the interest of taking care of myself, I'm going to take the easier road this week and share with you a meditation written by Sue Patton Thoele in her book The Woman's Book of Courage - meditations for empowerment & peace of mind (1991, Conari Press).  Her book includes many great thoughts (even for all of you guys), and I have shared from it before. Hope this one speaks to you:

Filling Ourselves First

    We know it is important for our sense of well-being to give. In fact, there has been scientific study which shows that the immune system responds positively when we help others, and can be activated by merely watching a film about someone helping others.
    But it is not healthy to give until we feel drained, used, and deprived. Such giving can be laced with hostility, resentment, anger and the unspoken message: "Now you owe me!" This is not loving; this is bartering. We love best from a sense of overflow. When we are brimming with the energy that comes with having the courage to take care of ourselves first, our love and caring are freely given gifts, with nothing expected in return.
    Our minds may tell us that filling ourselves first is an act of selfishness--it seems to go against society's dictum, particularly addressed to women, that it is more blessed to give than receive. It takes a tremendous amount of courage to realize that filling ourselves is essential. It takes even more courage to know how to do it, especially if we are out of the habit of thinking about nourishing ourselves.
    To help move into the healthy pattern of filling yourself, ask yourself these questions and jot down the answers: What replenishes me so that I can love freely? What small step can I take today to allow time for myself to fill and refill?
    We can do ourselves, and those we love, a favor by having the courage to fill our life's vase; by making a commitment to ourselves that, in order to be a free flowing, clear fountain of love, we will fill ourselves first.

Hope you will take the time to read this passage at least once more in the week ahead. There is so much to consider. And perhaps you will begin to think more about how you can responsibly take care of yourself first. This is not selfishness. It's what you wish for your loved one to do. It's your primary responsibility. The airlines know this and that's why they instruct parents and caregivers to put on their own oxygen mask first. You can't be of use to others if you don't take care of yourself. Taking care of ourselves is the most important first step we can take in caring for our relationships with others.

Perhaps this is a change you need to consider in your own life--the notion that in the midst of stress all around you, it's important to think not only of how to "fix the situation", but also it's crucial that you think about taking care of yourself. We are no real good to others and may even be harmful when we are exhausted, poorly nourished, and over extended. Maybe what you need right now as a starting point for change is the permission to do so. OK, read these words: consider yourself commanded--by a power and authority much higher than the one typing these words--to treasure and care for the gift of life and the vessel it came in that has been entrusted to you for your time on this earth.

Get adequate rest. Eat healthfully. Make time for some type of regular moderate exercise. Have some moments of relaxation in each day. Allow yourself to heal.

And if your mind is telling you that you can't do this, it is the surest sign that you must!Marjie Ruth
727-244-9011 (c)
sruth1@tampabay.rr.com

Remember: getting on or off my very confidential weekly email list is as easy as sending me an email with your request. I'm happy to accommodate."

Helping Your Loved One Manage Change

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

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

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

The Table of Contents reveals five themes and 15 sections:

"Goals: Go Slowly

1) Change is Difficult

2) Lower Expectations

Family Environment

3) Keep things Cool and Calm

4) Maintain Family Routines

5) Find Time to Talk

Managing Crises (pay attention but stay calm)

6) Don't Get Defensive

7) Self-Destructive Acts...Require Attention

8) Listen

Addressing Problems (Collaborate and Be Consistent)

 9) Three "Musts" for Solving Family Problems

10) Family Members: Act in Concert

11) Communications with Therapist/Doctor

Limit Setting (Be Direct but Careful)

12) Set Limits...Limits of Your Tolerance

13) Don't Protect from Natural Consequences

14) Don't tolerate Abusive Treatment

15) Threats and Ultimatums"

All this on eleven pages!

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

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

Memory and Recovery from an Eating Disorder

Yesterday I had the distinct pleasure and honor of serving on a panel with two other mothers whose offspring have, fortunately, recovered from their eating disorders.  We presented to the local chapter of the IAEDP and the three of us addressed the role of parents in eating disorder recovery.  Being a Friday night, there were more empty seats than usual but key people were there and we were able to deliver our important message of the value of involving parents in treatment and why.  As well, we and Dr. Laura Schnaps our moderator were able to identify next steps as well as congratulate the IAEDP for establishing a local chapter.

Representatives from Sierra Tucson (the sponsor), Mirasol (residential treatment center), and Desert Milagros (out-patient facility) were also present as well as several local therapists and registered nutritionists.

Each of us spoke about our journeys as parents and what we've learned along the way, some of our loved one's experiences (as well as ours) as well as what needs to change.  Frankly, I think we made a great team!!!

One mother, whose daughter entered treatment relatively quickly, said that she learned one of the reasons her daughter made a solid recovery was not only the initial treatment in residential as well as the step-down offered by the facility (a critical component), but also because her daughter retained the memory of healthy behavior, which could be accessed and made real.

What an interesting and no doubt accurate assessment.  Memory is a powerful tool because it reveals pathways of behavior, technically speaking.  If those pathways aren't altered by new pathways caused by new behavior that's become or becoming entrenched, it would make sense that memory would aid in recovery.

Following on that, it makes sense that my loved one, who has been entrenched in an eating disorder for more than twenty years, has lost the memory of how she behaved and how she thought when she was healthy.  She has totally lost her ability to feel hungry/feel full.  Her sense of self has been consumed (deliberate word) by her eating disorder.  Her task, therefore, to return to health is much more difficult and involves a much longer period of time during which new thoughts and behaviors need to be set up and strengthened so she can turn to these tools when confronted by a situation that raises her anxiety. 

So, I would conclude, following this line of thought, that this is another reason why it's imperative to get your teenager or child (when eating disorders usually start) into treatment as soon as possible, not only to provide important nutrition as the first critical step towards recovery but also to access their memory.

Aspartame - Is it dangerous for those with an eating disorder?

Aspartame – is it dangerous for those with ED?

This question has troubled me for years and I know that many people have researched it.  I know that those continuing to warn about this substance are often ridiculed.

I have observed that many people with an eating disorder, particularly those with bulimia, will ingest large amounts of this artificial sweetener when drinking diet soda or coffee into which several packets are added.  Add up all the aspartame consumed in one day and I expect that the total is far more than what is noted to be “normal consumption” in the studies that have purportedly concluded that aspartame is not dangerous to humans.

I disagree with this conclusion.  I know this conclusion has supposedly been upheld by many government studies but I cannot help but think that this substance affects the functioning of the brain when the brain is not nourished appropriately.   Or that something else is going on.  I think this is worth a look.

To review:

Aspartame is synthesized by combining the amino acids L-phenylalanine and L-aspartate.  Aspartame is a peptide.  When it is decomposed it breaks down to phenylalanine, aspartic acid, and methanol.  

I had to dig a bit, but studies have indicated that a “normal” dose of aspartame is thought to be equivalent to 3 12-ounce cans of diet soda, or 36 ounces.  Many people with eating disorders consume far more than that a day.  Think about the 40 ounce diet drinks one can pick up at the corner mini-market and the packets of aspartame added to a cup of coffee or anything else the person wants to have sweetened.

According to this chart  produced by the Canadian Diabetes Association, a packet of aspartame contains between 17 and 33 mg. of aspartame.  A 12 ounce can of diet coke contains 131 mg of aspartame.

So, on an average day, one could assume that a person with bulimia or anorexia could consume at least the equivalent of a six-pack or two 40 ounce “Big Gulps” and perhaps at least 3 packets of aspartame.  Twice that much from the packets if they have two cups of coffee in the morning. 

 This would mean that they were consuming far beyond the “normal” dose; in fact, they are consuming at least 837 mg of aspartame a day or more than twice the “normal” amount assumed by the industry.

Phenylalanine is biologically converted into tyrosine, another essential amino acid. Tyrosine is then converted into L-DOPA and that is converted into dopamine, norepinephrine, and epinephrine. Dopamine, norepinephrine, and epinephrine are known as catecholamines which interestingly enough, create all sorts of symptoms for someone who has a form of small intestine cancer including anxiety, flushing, or what we call the fight or flight syndrome taken to extremes.   In addition, phenylalanine crosses the blood-brain barrier and uses the same brain pathway as does tryptophan and can interfere with the production of serotonin.

I haven’t even addressed caffeine!

Recall my posts following my discussion with Martie Fankhauser about neurotransmitters.
Depression anyone?  Other symptoms?

Suppose some of those who develop eating disorders only carry one gene for PKU which means they only produce 10 percent of the normal amount of phenylalanine hydroxylase which breaks down phenylalanine?  Even if they don’t carry one gene for PKU, all of the phenylalanine (which makes up 50 percent of aspartame) stays in the body, is in the bloodstream, and crosses the blood-brain barrier, interferes with tryptophan and decreases the amount of serotonin. 

Suppose, in other words, that drinking and eating far in excess of artificially sweetened with aspartame substances exacerbates the chemical changes that occur in the body when a person is developing and then entrenched in an eating disorder.

Are these things related?  How many of those folks with only one gene for PKU also have eating disorders?  How many folks who ingest aspartame to excess with only one gene present evidence of behavioral symptoms for which they are receiving other medications rather than just removing the aspartame?  Does aspartame affect people with other mental illnesses or the genetic set up for other mental illness?

I am asking these questions because I am observing the resurrection of a personality that I haven’t seen for many, many years and this person has not been allowed access to aspartame for several months now.  Is there a cause and effect going on here?  Should this be researched further?  Wouldn’t it be wise for those with eating disorders to stop ingesting aspartame?  Do those who go on diets immediately increase their use of aspartame-sweetened products?  Does this make those folks more susceptible to eating disorders?  To develop symptoms of mental illness?  What about all the teenagers who are drinking diet soda?  

I think these are important questions.