On Wednesday, April 17, 2013, at the same time that others were speaking out about eating disorders across the United States and while the Eating Disorders Coalition was coordinating visits on Capitol Hill, I got up early and drove 281 miles round trip from my home in Tucson to the State Capital in Phoenix and back to share my story as a parent; as a family member. I was grateful for the opportunity because as another parent put it to me after the briefing, only parents who've been through this "get it." It's impossible to truly convey the story of this journey in just a few minutes.
The legislative briefing was sponsored by Senator Katie Hobbs of District 24 in Phoenix and coordinated by a group of dedicated people who are part of the Arizona chapter of the NEDA STAR program. A huge thank you to Senator Hobbs and to the organizing committee.
Four of us spoke (two of us are therapists, at least two are in recovery, and I'm the parent): Sam Lample, Dena Cabrera, Jennifer Keyes, and Jennifer Aviles.
NEDA sent out an announcement about the briefing. Senator Hobbs sent around an interoffice memo to all the Arizona legislators. This event was an important first step. A seed was planted. This event, simply by being advertised although unfortunately not well-attended by the very legislators we hoped to attract (even offering lunch during a brief half hour session), brought eating disorders to the desks of their staff if not to the desks of our representatives themselves. One of my representatives, Senator Steve Farley, stopped by her office, Senator Hobbs told me, to learn more about today's briefing.
I personally hope that perhaps next year there will be more interest that eventually, as has happened in, for example, Virginia, legislation will be passed for at least school screenings. I learned that the Phoenix NEDA walk may have attracted as many as 200 people. The one in Tucson attracted at least 30 to 40 [estimate]. Each step literally brings awareness to a situation that needs attention; to a cluster of brain disorders -- eating disorders -- that are not rare; in fact, the numbers are hidden in many cases because so many people -- girls and boys, men and women -- keep it a secret.
In addition, Senator Hobbs picked up the (to me) priceless AED Eating Disorders Publication: Critical Points for Early Recognition and Medical Risk Management in the Care of Individuals with Eating Disorders. I had brought several copies of this publication to the briefing. Several were taken.
F.E.A.S.T. and the AED have produced several publications, actually. You can download and print information by clicking here.
My intention is to write a letter to all the legislators from Southern Arizona and include a copy of both these publications. [I find it helps me to write intentions publicly! I didn't make much progress on this intent because I became ill and my family member's illness took a downturn.]
We all spoke to several points including the need for managed care from the moment of diagnosis, the need for early diagnosis, the need for screening in schools and colleges/universities, the need for those who manage insurance companies' coverage to understand that treatment as long as necessary is the key to recovery, and to the myths of eating disorders. The text of my presentation addresses additional issues.
I gave the text of my prepared talk to Senator Hobbs. My talk was admittedly longer than the five minutes given to me (I timed it at 12 minutes, actually) but then how does one cram 25 years of trying to find help for my loved one and what I've learned so I can educate not only those who can make a difference (legislators) but also parents and family members (who so very much need support, too). We ran out of time; I was unable to finish but I think I got some significant points across to those present. I will work on a shortened version and provide a link here, later.
The big point I want to repeat here is that without the comprehensive managed care of my loved one's Mental Health Team here in Tucson, I do not think she would be alive today to continue to take advantage of treatment that may possibly help her to extricate herself from her eating disorder. A hospital here in Tucson stepped up with changes in protocol to help my family member address her eating disorder. If this team and this hospital could do this, so can others.
But, here in Arizona, we need resources -- financial and human. We need legislation to make a difference! We need health insurance that provides comprehensive treatment for eating disorders -- brain dysfunction -- on parity with other diseases like cancer, like multiple sclerosis, like autism....
This morning, I learned of a talk by Emma Woolf that was on the BBC. She is in recovery from anorexia. Her talk on her journey plus the latest research on the brain -- again, eating disorders are biologically-based brain disorders -- is so comprehensive, I'm providing a link here. [I hope those who come across my blog will spend the 15 minutes she takes to talk about her experience and the knowledge she has gained.]
We all have so much work to do. Following the session, a young woman whose sister recently passed away from anorexia spoke to me at length about her and her family's journey to try to help her sister. I include this to remind readers that families are part of all of this, too. We need support and a listening ear, too. For how else can we keep going?
A huge thank you to all the people who are working on obtaining effective treatment for eating disorders. A huge thank you to those who are devoting their lives to research on this biologically-based brain disorder.
Together, we can all make a difference.
Information is provided about eating disorders, particularly of adults, to parents and other loved ones written by a parent who is in recovery from an eating disorder.
Welcome
When I created this blog, I was "getting on" in my early sixties, hence the blog name. However, my adult daughter's eating disorder and co-occurring emotional dysregulation disorder and other co-morbidities - ongoing for about 33 years - became and was our focus as we attempted to help her get into recovery. By learning about, reflecting on, reading about, attending conferences and writing about eating and brain disorders, I created a place to blog what I've learned. I hope this blog will be of use to others, especially families of and adult sufferers themselves to help them get into recovery. I update posts from time and the update date will be present at the top of the post.
Sadly, my daughter passed away in early October 2021 mainly because her body became so malnourished that she was immunocompromised, contracted a severe infection that was not properly addressed during an earlier hospital stay the month before, and developed an overwhelming non-covid pneumonia following surgery to save her life. I believe she should have been able to receive palliative care but Arizona, our country, and even the professionals trained in the treatment of eating disorders, particularly anorexia, are not "there" yet. I address the issue of palliative care in a recent post below, initially written in November 2021. I am not a certified eating disorder specialist. I am an Expert by Experience and college-educated with a BA in Community Work with an additional certificate in a one-year program in Business Administration from the same institution.
I am passionate about all of this because, as Shakespeare wrote in The Taming of the Shrew, Act 4, Scene 3: "My tongue will tell the anger [and sadness] of my heart or else my heart, concealing it, will break. And, rather than it shall, I will be free even to the uttermost, as I please in words."[2016]
Travel Guide
If you're new to my blog, I recommend you begin on the right side and take a look at the "Of Note" offerings. Read Dr. Cynthia Bulik's recent published interview (5/4/22) "Rethinking Eating Disorders" if you want to print an easy-to-understand professional's expert opinion about anorexia for your family doctor or the therapist. [Early intervention is absolutely critical. For those whose eating disorder is categorized as entrenched or severe and enduring, read the editorial comment by Stephen Touyz and Philipa Hay for a new approach about treatment. It is possible for your loved one to recover! I have also attached a link here for additional papers on the subject of severe and entrenched eating disorders. If you are a family member or friend of an adult with an eating disorder and have been at this for awhile, I refer you to the posts within the title "Adult Eating Disorders and Recovery Tools" found in the Index on the right hand side of this site. As well, in the "Of Note" section take a look at those posts with an asterisk. If you're a parent and need support, look for posts in the Index about parent support or parent toolbox.
In my opinion, the best book to buy, to refer to constantly and to share with members of the medical/psychiatric profession is "Sick Enough: A Guide to the Medical Complications of Eating Disorders" by Jennifer L. Gaudiani MD, CEDS, FAED. "Dr. Gaudiani aims to improve medical diagnosis and treatment, motivate recovery, and validate the lived experiences of individuals of all body shapes and sizes, while firmly rejecting dieting culture."
I recommend two groups who will support you on your journey - F.E.A.S.T and the National Alliance for Eating Disorders. Both maintain websites and Facebook private groups.
Showing posts with label eating disorders and schools. Show all posts
Showing posts with label eating disorders and schools. Show all posts
Thursday, April 18, 2013
Tuesday, December 6, 2011
Involving Your Local Schools - a CD-ROM of kits from NEDA
While visiting the Parents, Family and Friends Network of NEDA this morning, I was delighted to learn that NEDA will send a CD-ROM packet containing three updated as of November 1, 2011, information kits directed to (1) educators, (2) coaches, and athletic trainers, and (3) parents to schools in your area on your behalf. Click here for more information about the kits and scroll down to the link provided.
Parents, you can click on the same link, click on the kit for parents, and download a valuable printed reference notebook. I've put mine in a 3-ring binder.
Parents, you can click on the same link, click on the kit for parents, and download a valuable printed reference notebook. I've put mine in a 3-ring binder.
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