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TOP DD Study - Professor leads groundbreaking search for answers in mental health

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TOP DD Study - Professor leads groundbreaking search for answers in mental health

Post by felicity on 7/1/2015, 11:11 am

2015 conference to benefit Treatment of Patient with Dissociative Disorder (TOP DD) Studies -

Professor leads groundbreaking search for answers in mental health
By Christine Collins on June 11, 2013
What if you had a condition no one could name? You try all kinds of medications and treatments, but none of them work. You’re in and out of hospitals and emergency rooms after suicide attempts. Some doctors think you’re a fraud. In a years-long struggle to stay hopeful, you’re lucky if you can stay alive.

Bethany Brand teaches an Honors Psychology class.
That is what it’s like for people with dissociative disorders.
Now, Towson University psychology professor Bethany Brand is leading the world’s largest and longest international study on the effective treatment of those disorders, broadly referred to as DD.
Dissociation starts out as a kind of life preserver. In cases of chronic childhood trauma—any kind of prolonged abuse, usually at the hands of someone a child knows or loves—the brain shuts off parts of its reactionary processes. It lets a child “turn off” his or her physical and emotional environment- and memory-based responses to functionally survive the ordeal. But if a child is badly scarred psychologically, dissociation can become permanent, leading to a set of disorders that doctors and even researchers barely understand.
Dissociative Identity Disorder is one subcategory, formerly known as Multiple Personality Disorder. It formed the basis of an Emmy-winning dramatic comedy on Showtime called The United States of Tara. But Brand says some of it was misrepresented.
“Very few professionals receive any training in how to detect or treat DDs,” says Brand. “In general, childhood trauma research is not well-funded.” And studies are typically funded for 13 weeks or fewer. Effectively treating DD takes years.
According to Brand, about one percent of the world’s population suffers from the most severe type of DD. Schizophrenia, which is not a DD, affects the same percentage, but a Google search for scholarly articles on schizophrenia turned up 103,000 results. When Brand looked for research articles on DD treatment, she found eight.

From left: Bethany Brand, Richard Loewenstein, Ruth Lanius, Frank Putnam and Richard Kluft.
Fortunately, her team has doubled that.
For the first phase of the study, called Treatment of Patients with Dissociative Disorders (TOP DD), Brand and her team refuted claims that DD does not respond to treatment. They evaluated treatment response in 280 patients around the world. At the end of the study, patients had fewer symptoms of DD and fewer hospitalizations.
In April, Brand presented the results at a traumatic stress conference at Sheppard Pratt, with support from the International Society for the Study of Trauma and Dissociation. The attendance alone demonstrated the need for her team’s work: in a region rich with opportunities for mental health research and practice, the conference sold out. Funding for the study came through grants from Towson University, two private family foundations, and donations from therapists and patients. The attendees at the conference donated $25,000 for the next study: developing a website that will engage DD patients and their therapists around the world in an effort to improve treatments and outcomes.
It won’t be easy. Among other elements, Brand and her team will produce a series of five-minute videos providing exercises for patients—things like actively engaging in an emotion for a set period of time or writing a list of alternatives to self-harm behavior. But to maximize understanding, everything on the site has to be done at a 6th-grade English level. And any patient who uses it must be in individual therapy, in case something on the page—a color, a voice, a hairstyle—triggers a dissociative behavior.
Along with the $25,000 raised at Sheppard Pratt’s conference, funding for this next study will come from Towson’s College of Liberal Arts, as well as private donations. It will also involve technical support from new media professor Thom Lieb, as well as an Irish web company that specializes in psychiatric content. The site will contain embedded analytics to track its usage and effectiveness.
Brand is still working to raise more funding, but she says the work is worth it. The benefit ripples from the patient to society as a whole. “If we are able to provide treatment that is effective and tailored to their symptoms, we may be able to provide a substantial reduction in health care costs,” she points out. “Many of these patients are so ill they cannot work, so they receive psychiatric disability payments and live in government subsidized housing.
“If they receive appropriate treatment, some of these patients could eventually become sufficiently functional that they could gradually return to employment.”
And that gives everyone hope.
Click here to donate to the TOP DD study. In the middle of the page, where it says “I would like to support…” select TOP DD from the dropdown menu.
TOP DD Research Team: Bethany Brand, Ph.D. (Towson University); Frank Putnam, M.D. (Cincinnati Children’s Hospital Medical Center and University of North Carolina); Ruth Lanius, M.D., Ph.D. (University of Western Ontario); Richard Loewenstein, M.D. (Sheppard Pratt Health System and University of Maryland); Gregory Chasson, Ph.D. (Towson University); Thom Lieb, Ph.D. (Towson University); Catherine Classen, Ph.D. (University of Toronto); Claire Pain, M.D. (University of Toronto); Amy Myrick, L.C.P.C. (Family & Children’s Services of Central Maryland); Paul Frewen, Ph.D. (University of Western Ontario); Suzette Boon, Ph.D. (Netherlands); Onno van der Hart, M.D. (Netherlands); and Kathy Steele, MN, CS. (Atlanta, GA).  source: http://tunews.towson.edu/2013/06/11/professor-leads-groundbreaking-search-for-answers-in-mental-health/


Last edited by felicity on 7/18/2015, 9:23 pm; edited 2 times in total



     

Don't miss the Ivory Garden Conference this year!!

https://igdid.org
Who is Ivory Garden Nonprofit Corporation?

https://ivorygardensite.com/

Contact Pat Goodwin, MA
President: Ivory Garden Nonprofit Corporation

felicity4us2@gmail.com
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Patchesmany
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Re: TOP DD Study - Professor leads groundbreaking search for answers in mental health

Post by Patchesmany on 7/1/2015, 11:14 am

2015 conference to benefit Treatment of Patient with Dissociative Disorder (TOP DD) Studies -

Interesting article but the very end bothers me. Perhaps I'm over sensitive but there are people with DID who do hold jobs.



patches
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hideandseek
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2015 conference to benefit Treatment of Patient with Dissociative Disorder (TOP DD) Studies -

Post by hideandseek on 7/1/2015, 11:53 am

2015 conference to benefit Treatment of Patient with Dissociative Disorder (TOP DD) Studies -

Nice to hear about someone proactively researching .... really need therapists who know what they are doing.
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2015 conference to benefit Treatment of Patient with Dissociative Disorder (TOP DD) Studies -

Post by mystory on 7/1/2015, 4:39 pm

2015 conference to benefit Treatment of Patient with Dissociative Disorder (TOP DD) Studies -

If there was a fan club these people would be the stars (along with Felicity, the IG speakers, our t's and others who have helped along the road)!

We thank them for stepping out!  It feels hopeful to me too because there are some Canadians mentioned.  My boat feels like it's back at the dock reading this.

Patches, maybe there is a spectrum.  We still feel like mismatched socks, however.  How long can we keep the mask on?

Thanks Felicity.

Maybe we could have a special fundraising effort sometime, that wouldn't interfere with fundraising for the conference.
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Re: TOP DD Study - Professor leads groundbreaking search for answers in mental health

Post by Orchard on 7/2/2015, 2:36 pm

appreciate the background info on these folks.
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2015 conference to benefit Treatment of Patient with Dissociative Disorder (TOP DD) Studies -

Post by DragonLady on 7/4/2015, 8:37 am

2015 conference to benefit Treatment of Patient with Dissociative Disorder (TOP DD) Studies -

The research is increasing ... broadcasting the outcomes ... and getting info into professional conferences and teaching institutions are required as well.  Also conferences need to be run in the mid-west so local practitioners actively doing tx can get both information and educational credits.  On-line training needs to be developed so those who can't travel can learn anyway.  My step-daughter would jump on training like this, but professional development dollars don't permit the travel or cover the Registration fees.  if this information is to become useful, then dissemination needs to change.
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2015 conference to benefit Treatment of Patient with Dissociative Disorder (TOP DD) Studies -

Post by felicity on 7/4/2015, 6:06 pm

2015 conference to benefit Treatment of Patient with Dissociative Disorder (TOP DD) Studies -

I hope you all got the newsletter - I put this article there.

Patches, I put the same thing - nearly - before I read this article on our website.  Yes, people do work - that is a fact, but many are on disability - and, in order for the gov to chalk up any money for research, they have to see the positive affect it will have on their budget - well, that is one of the reasons - so, for instance, I am on disability - so, just I cost the gov about 20,000 a year or more.  That is a lot when you add all of the other people on disability.  If anything we are doing could help lower that, it would be worth helping us out.  And, we 'want' to work - and, with good mental health care, we are able to -

I don't think she is saying that we are all disabled who have DID - or that we should be or anything.  When you start trying to get funding for studies, people toes feel stepped on, I think.  

Anyhow, I - personally - would like to fundraise for this project - if it didn't interfere with the conference - that would be so cool.  

These people are my heroes - and, Dr. Loewenstein is coming to the conference to speak and perform - I can't wait to see all of the wonderful speakers and everyone else there.


Last edited by felicity on 7/18/2015, 9:26 pm; edited 1 time in total



     

Don't miss the Ivory Garden Conference this year!!

https://igdid.org
Who is Ivory Garden Nonprofit Corporation?

https://ivorygardensite.com/

Contact Pat Goodwin, MA
President: Ivory Garden Nonprofit Corporation

felicity4us2@gmail.com
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felicity
Felicity Lee
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Re: TOP DD Study - Professor leads groundbreaking search for answers in mental health

Post by felicity on 7/4/2015, 6:15 pm

Oh, I wanted to mention that online training is available - check out the ISST-D - I don't have that much information, but do know that it is available out there, and they would know about it.



     

Don't miss the Ivory Garden Conference this year!!

https://igdid.org
Who is Ivory Garden Nonprofit Corporation?

https://ivorygardensite.com/

Contact Pat Goodwin, MA
President: Ivory Garden Nonprofit Corporation

felicity4us2@gmail.com
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DragonLady
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Re: TOP DD Study - Professor leads groundbreaking search for answers in mental health

Post by DragonLady on 7/4/2015, 6:24 pm

Hi Patchesmany,
Yeah I was a little bothered by the end of the article too. Many of us manage successful careers and do so without ever being hospitalized. I have spent many a miserable hour in Therapists office across the decades but never been hospitalized. I'll bet there are many others who manage to cope without that services.
Sharon/Kyle
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Re: TOP DD Study - Professor leads groundbreaking search for answers in mental health

Post by Patchesmany on 7/7/2015, 7:55 am

Makes sense felicity.

I guess my problem comes from the fact that our system is set up to continually function no matter what. We have never been hospitalized or on disability. Yet we struggle immensely. Over the years we have struggled a lot to get adequate help because we appear okay. Our very system set up to keep us functioning, made it difficult to get help.



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2015 conference to benefit Treatment of Patient with Dissociative Disorder (TOP DD) Studies -

Post by mystory on 7/7/2015, 8:24 am

2015 conference to benefit Treatment of Patient with Dissociative Disorder (TOP DD) Studies -


Patchesmany,
Ours too.  It's required by our system too, but we are exhausted keeping up these appearances.  Maybe working or not working should not be the only consideration as a measuring stick as to whether one is better.  

I would like to see the 5 minute videos.
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DragonLady
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Re: TOP DD Study - Professor leads groundbreaking search for answers in mental health

Post by DragonLady on 7/7/2015, 9:40 am

Aye ... keeping up the appearances of being okay is truly exhausting. We are that right now ... worn out. We hear you.
Sharon/Kyle
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felicity
Felicity Lee
Felicity Lee

Re: TOP DD Study - Professor leads groundbreaking search for answers in mental health

Post by felicity on 7/7/2015, 11:36 am

I didn't realize when I posted this article that many might know what the TOP DD Study is all about.

There are many links in this article that will give you an idea.

This is taken from the website, "The Expert Survey, which surveyed 36 international experts in the treatment of DD, underscored the importance of providing DD-related information as part of treatment. The experts recommended that for DD patients in the early stages of treatment the following should be emphasized: establishing and maintaining safety, providing education about symptoms and their management, developing healthy coping skills including grounding (to increase control over dissociation), appropriate self-care, emotion regulation, and containment skills (to manage intrusive trauma symptoms).

Our next study, the TOP DD Network study, will examine whether a web-based intervention, in combination with individual psychotherapy, is more effective for DD patients than individual psychotherapy alone. The TOP DD Network program is a year-long web-based educational program for DD patients and their therapists that is informed by the results of our previous studies. More specifically, the TOP DD Network program provides education about DD and healthy coping skills (including managing dissociation, unsafe urges and emotions) with a focus on the enhancement of DD patients’ safety." http://www.towson.edu/topddstudy/phase.asp
Also: "The Treatment of Patients with Dissociative Disorders (TOP DD) Studies examine DD treatment process and progress in the service of identifying the most effective treatments for DD. Finding the most beneficial and cost effective interventions for DD patients is crucial because DD are associated with severe symptoms and considerable suffering, serious impairment in functioning, and high treatment costs. So far, the TOP DD research team has conducted two studies: A prospective, naturalistic study of treatment outcome among DD patients from around the world (“the naturalistic treatment study”), and a survey aimed at capturing DD experts' recommendations to identify the specific treatment interventions experts have found effective at various stages in DD treatment (“the expert survey”)." Source: https://topddstudy.com/

I know that many of our members have been involved in this study with their t - and, have posted here about this study before. And, many therapists became interested, because we brought it to them - them not even aware that the study was happening.

Therefore, we are important, because the purpose of this study is to help people with DD's (dissociative disorders) get the best treatment in the shortest amount of time as well as to help clinicians be better educated in the area and to give them the resources they need - thus more access to quality treatment for those who do not have health care coverage.

Wow - that is Ivory Garden's purpose and mission as an organization.

We are important - and research takes time and money. This is the only research out there that I know of that is being done for this purpose. You can read the publications (journals) done so far on these websites also. This team of professionals put in their time and effort - working hard and diligently, because they believe in the purpose - just as we do.

We have the honor of welcoming experts to our conference - with the same purpose, but we also include survivors - who we believe are an integral part of being involved in education, awareness, and understanding of DID (especially) from the experts - rather than being barraged with misinformation and public stigma from what we read on the web.

I did my undergraduate studies in psychology long before I was dx DID - not clinical (therapy) - but research. I was taken with the studies and as we learned to not only do our own research, we also took other research and studied it for reliability and validity. Previously, as a lay-person, I had not been aware of the importance of research and how it changes our world. I learned to look at what we (as the public) come to believe based on unreliable and invalid studies that are literally a joke - such as what they call 'false memory syndrome' - never been proved by reliable research - but well publicized as if it is, and having affects on clinicians and clients beliefs about DID and memory. Problem is that reliable and valid research has been difficult to access unless you are within a program at a college. At least, that was my experience. With the internet, we now have more access to read and analyze publications that are scientific, reliable, and valid.

Books, like "Sybil Exposed" are simply garbage - as is such studies like the "Mall Study" http://users.owt.com/crook/memory/ - one of the studies that supposedly proves that false memories can be 'implanted' by therapists, etc. The general public simply believes without really looking (or knowing what to look for) within studies and analyzing that not only is it a study that has NO validity, can not be replicated, etc. and is not in the least scientific.

Why is this important for us to know about? I think that people with DD's search for information, read everything they can find, and want to know more - want to know what is 'true' about them. Are our 'memories false'? Is there really a such thing as DID? Why do so many clinicians misdiagnose us? And, we search for information - and, end up questioning our own experiences based on misinformation that we find out there. We end up seeking out peer support in order to find others who understand. WE 'need' to know from 'real' experts in the field. At least, I do, and I have a right to define my own therapy.

Problem: I come from a psychology, research background, but most 'social workers' do not and, they base their 'beliefs' on similar information that we find - not in scientific journals. I went through the social work program and learned very little about the affects of abuse on adult survivors - and nothing about DID. We learned how to bill insurance and write goals. We learned to dx based on what our instructors taught. At the time, I knew nothing about my own DD and no idea when I was dx. Like everyone else, I went searching for information on bookshelves and the internet. My kids did the same and found more information telling them there was no such thing - and, believed that I was faking and looking for attention. That really hurt.

Those students that are learning from Bethany Brand are so very lucky - I wish that I were there now. I love to learn - and, what she is teaching is invaluable to every students' future careers - as well as their clients.

We are as lucky - as are the professionals and supporters attending our conference to be able to learn the truth from the experts who are volunteering their time to come 'for us' - the folks with DD's, because we matter to them.

No - not all of us are disabled, some of us have never had therapy, but all of us struggle with the symptoms, and just knowing that these people are out there working everyday for 'us' is amazing. I believe that we are all intelligent and able to learn from these people. I see here on this forum that members are reading the books that were available at the conference, able to understand the workshops and plenaries presented - that are actually Master or PhD level. Never before has there been a conference such as ours' that included folks with DID and clinicians in all of the presentations.

The TOP DD Study is a long-term study that has different phases. It may seem that we can turn our head and let them handle all of this and hope that someday we all benefit from the outcomes - but, we do benefit everyday that people read and take seriously the research that has already been done. Conferences such as ours' and others, and the work we do in therapy - based on this research - does help us. One of our missions is 'awareness' - getting this research out to the public. Every time, we bring this study to our therapists' awareness, we are creating awareness. Right? And, as we work with our therapist in this program, we gain the benefit of the work they are doing. Everyone who attends the conference - from all over the world - brings their experience back home to others.

Previous to becoming involved with following this study, I felt that we were 'left out' - as if only the professionals were involved. This study brought us 'in' to be a part of bringing awareness and education to everyone involved.

I believe strongly in this study - as you can tell.

If you disagree with me or want to know more about it - you can discuss it here.

Again, I apologize that I just assumed you all knew about the study.




     

Don't miss the Ivory Garden Conference this year!!

https://igdid.org
Who is Ivory Garden Nonprofit Corporation?

https://ivorygardensite.com/

Contact Pat Goodwin, MA
President: Ivory Garden Nonprofit Corporation

felicity4us2@gmail.com
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DragonLady
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Re: TOP DD Study - Professor leads groundbreaking search for answers in mental health

Post by DragonLady on 7/7/2015, 6:06 pm

Thanks for the discussion Felicity. It is very helpful. I certainly look forward to the conference and all its discussions. And of course seeing you.
Kyle/Sharon

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2015 conference to benefit Treatment of Patient with Dissociative Disorder (TOP DD) Studies -

Post by gin on 7/7/2015, 10:30 pm

2015 conference to benefit Treatment of Patient with Dissociative Disorder (TOP DD) Studies -


YES!! i get the funding part but some of the stuff feels stigmatizing to me too... and leaves us again feeling like we are just full of shit and can't possibly have DID because we don't fit the pattern of accessing mental health, ip, disability etc. when in our community there is no door for access anyways...

like we have no t still and no dx
first t who sent us here
just stared at us like we r a guineu pig
and says we look like we just did heroin
but he had no way of helping us ground
was just fascinated by the looking "high"

then had 3 more ts not get it
but at least they allowed me as patient
2 ignored any of me mentioning journals
time loss etc.... and they didn't asked
the right questions for screening... so just
treated under PTSD blah 3rd tried hard but
didn't notice anything and had me leave sessions so
spacy i had to sit in the clinics lawn for hours
trying to figure out my body name etc

now as soon as i say the D word people
refer me on because they have zero
training... so access to services has not be
granted unless i agree to being misdiagnosed
or treated for stuff i had plenty of support on already like PTSD

the only t person in my town who somewhat gets it
it's very unhealthy herself and booked up with patients
so we are stranded in the trees here

we also desperately keep our job
mainly to keep control over decisions!

and we avoid hospitals like the plague
we were in a picu and don't trust people in scrubs
and freak with stretchers, locked doors and such
plus a record of ip is a huge barrier to our employment and immigration and the lead pdoc in the only inpatient place at the only hospital in a 500 mile radius openly refuses to accept DID as a dx or acknowledge dissociation exists despite him using the DSM to dx

so yea! people with so much power - ts and pdocs -
who can dx, commit folks, etc. should be more educated on
an issue that effects a ton of people!! DUH!

way to go for folks fighting for the study!
this is essential to establishing access to care
and a high standard of that care everywhere!

also we have seen many ab*sers be in influential positions
as they gain from using others
i bet some of the lack of focus on childhood trauma
is due to some of the decision makers being in denial
and some being ab*sers themselves

i mean how many trauma survivors do you know
that are in powerful decision making positions in their community
with influence over funding and attitudes
for us a lot of people we know have trauma
and we know 1 in a leadership position
that's it!
everyone else i know who is a survivor is marginalized, economically disadvantaged, dropped out of school/lost career time etc etc... due to their childhood trauma

added mayor bummer for us is we don't remember mayor childhood trauma just have weird body memories and lack of memories... maybe it's a blessing but it feels like we don;t fit here but this is the place we have been most understood at since birth!

go study people! maybe one day we can meet some at he conference we re just having  bad year with the car crash
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felicity
Felicity Lee
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2015 conference to benefit Treatment of Patient with Dissociative Disorder (TOP DD) Studies -

Post by felicity on 7/8/2015, 12:13 pm

2015 conference to benefit Treatment of Patient with Dissociative Disorder (TOP DD) Studies -


Well, actually - there are people with DD's who are in powerful positions working for folks like us.  Unfortunately, it is not the time for them to announce their dx.  We have seen what happens when they do - they lose credibility.  This is because the public has been misinformed by those who do have the money and resources to use the public media to misinform and cause stigmatization - even within the the mental health field.  The people who misuse their positions to create illusions that child abuse statistics are overstated, that survivors of child abuse have 'false memories', that therapists can 'plant' memories, etc. do feed the public's denial and gives them the 'ok' to also stigmatize and turn their head.  It also gives the okay for abusers to continue.  

I was thinking about back in the 70's when child abuse was considered the worst of crimes.  Abusers were scared to death of getting caught or going to prison, because they received what they deserved by the other inmates.  Abusive parents feared that they would be 'told on'.  I don't hear much of that anymore and watch parents do worse now then ever before - and, think it is just ok, because CPS rarely follows through or seems to even care.  

Right now, it seems like a society out of control - as if they are all dissociated and/or uncaring of how very much abuse is happening and those who have been abused are the ones unable to get good care.  And, 'many' working with children don't report abuse, because they don't want to get in the 'middle' or be involved.  Many who work in the field of mental health or run hospitals tell me that they don't have time to come to conferences or educational workshops on trauma and dissociation, because they have their clientele and their beds are full without having to learn all that 'stuff'.  I have even heard, "I already know all about that - these workshops are too 'low-level' for me."  

And, yes - there is that sort of arrogance that comes within the field of social work - a sort of power that some gain by just being a clinician.  They have the power to dx or label people, decide whether they are 'believable', and reject them at will.  I would have to look it up, but there was a time when Masters level therapists could not dx.  That was probably a good thing.  But, pdocs can be worse.  IP, we got a 5 minute evaluation, dx, and meds - lots of meds - not even a proper evaluation or assessment.  I remember when they would give literally days and weeks of assessment and evaluation before giving a dx.  I think that lay people believe that still happens - and take the word the pdocs know all about a person just by looking at someone.  

And, they have the 'power' to reject us - the worst possible thing that happens to the child being abused or the adult survivor.  Rejection throws us into a spin where we lose perspective and kind of just give up asking for help.  I think that we have all experienced these problems.  

People just don't go to therapists for no reason - I don't think that ever happens.  And IP - well... hospitals don't just admit people who are not needing that type of care.  But, there are not enough trauma hospitals, and I have not found an IP hospital that knows anything about dissociative disorders (or even believes that they are real) so - they misunderstand the symptoms, and we end up leaving worse than we went in - actually abused within the hospital.

All of this has happened over time - and, given the okay for everyone to just do as they please - as they sit in denial of what is everywhere around them.  Clinicians ask, "How come this client isn't recovering with therapy?"  "I don't understand the symptoms that I am seeing."  "These clients' behavior is bizarre.  They must be psychotic."  Because they don't understand the symptoms, because they don't have the training to recognize them, they decide that they are brilliant and can dx based on the limited information they already know rather than seek out education that they missed and need in order to understand anything about the many folks who have DD's.  

I understand how the very fact that there needs to be this type of study in order to 'prove' that with proper care, people with DD's improve.  That seems a given - doesn't it?  

There is a huge problem - and the best answer to a problem is always the most simple.  Educate the clinicians and bring awareness of the problem.  We have added that survivors of abuse and all professionals benefit from education and support.  I love this study, because it includes survivors with DD's as part of it all -  

In this case, we see the problem, because we experience it daily and share those experiences with each other.  Those who run trauma hospitals and treat folks with DID daily also see the problem. (btw - we have three speakers who run trauma hospitals at the conference).  Those outside the field of trauma and dissociation, see no problem - or see us as the problem.  They practice in denial using misinformation as their evidence that they are right.  Unfortunately, that is their prerogative to treat in the way they see fit - at least, that what they tell us.

Recently, I have found that I am able to influence clinicians who believe that DID is not 'real' by using my behavior and symptoms as evidence - I can't get them to attend the conference, but they at least are becoming a bit curious - and, asking questions about DID and how child abuse affects adults.  A start - anyhow.  

It would also seem a given that experiencing abuse as a child would affect adulthood - and, mostly they somehow decide to misdiagnose with borderline - arggg.  More DBT must be the answer.  Forget that dissociation is a common defense - because, most don't even know how to spell it, much less pronounce the word.  So, they call it PTSD - getting closer - right?  Or CPTSD - getting even closer - but they stay away from DID - It is all very frustrating for us.  We are caught in a controversy that we have never known was even happening despite that it has affected us and the care we deserve.  And, for the first time in history, 'we' can be a part of changing things for the better.

We should talk more about the experiences we have all endured while trying to get good mental health care - and, what has been helpful for us.  I realize that some have been lucky to have great t who have been very helpful.


Last edited by felicity on 7/18/2015, 9:27 pm; edited 1 time in total



     

Don't miss the Ivory Garden Conference this year!!

https://igdid.org
Who is Ivory Garden Nonprofit Corporation?

https://ivorygardensite.com/

Contact Pat Goodwin, MA
President: Ivory Garden Nonprofit Corporation

felicity4us2@gmail.com

gin
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2015 conference to benefit Treatment of Patient with Dissociative Disorder (TOP DD) Studies -

Post by gin on 7/9/2015, 1:34 am

2015 conference to benefit Treatment of Patient with Dissociative Disorder (TOP DD) Studies -



what a great thread you all!

felicity your post fits perfectly into my day too... i was finally able to at least skim through my neuro psych eval as my PT person said it might have useful treatment recommendation for what she clearly identified as concussion symptoms....

guess what: the main focus of the eval appears to be on my "self reported mental health dx of PTSD and Panic Disorder with Agoraphobia" not my concussion symptoms :( makes me wonder what they would have wrote if i hadn't mentioned the dx i have

there are lots of recommendations for aggressive cbt and meds because i'm "too depressed and anxious" which they insisted is totally unrelated to being in the accident or taking the assessment in a non trauma informed environment.... although they've never seen me before the accident... i'm sure people without dx might feel a little anxious and depressed after a car accident too.. but because we got the dx labels already it appears to be our "choice" not to be better as we are not treating aggressively enough... when i have honestly tried very hard to access help and allow treatment via the mental health system when i still had someone to receive services from and as you mentioned too felicity came out worst then before i went in, felt judged, have been told i'm not cooperative, don't try hard enough, don't trust enough, don't allow other's to fix me enough, was triggered by people fishing for my story etc etc... and now find myself still searching for a t who's ok with the fact that i happen to dissociate

so my rock remains this board! it's hard to not take it personally when a whole system of health care providers in a way tries to tell you "it's your fault you're not better" when like you said the reality is they don't even know how to spell dissociation let alone treat it and many of them seem scare of it or simply cannot even see it through their narrow lenses

i think there's so much hope in folks accessing services and providers that want change pushing back via channels as this study!! yayyay!!

thanks again for sharing this!

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felicity
Felicity Lee
Felicity Lee

2015 conference to benefit Treatment of Patient with Dissociative Disorder (TOP DD) Studies -

Post by felicity on 7/9/2015, 4:55 pm

2015 conference to benefit Treatment of Patient with Dissociative Disorder (TOP DD) Studies -

And, we have not announced this yet, but wanted you all to know that we will be fund raising for the TOPP DD study as one of the purposes for having the conference.  We are so excited and hope to be able to fund raise enough to make a huge difference for them to move forward.  As soon as I know all of the details, I will pass them all to you.  

Thank you for your kindness - you all are the best.  It will not effect our conference at all.  Our purpose is to raise funds for conference expenses - after that, we are able to do even more - how exciting is that?!!  

I am totally excited about the conference - even more now !!!  Well, I was before - this is just so awesome.  


Last edited by felicity on 7/18/2015, 9:28 pm; edited 1 time in total



     

Don't miss the Ivory Garden Conference this year!!

https://igdid.org
Who is Ivory Garden Nonprofit Corporation?

https://ivorygardensite.com/

Contact Pat Goodwin, MA
President: Ivory Garden Nonprofit Corporation

felicity4us2@gmail.com
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mystory
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Re: TOP DD Study - Professor leads groundbreaking search for answers in mental health

Post by mystory on 7/9/2015, 5:52 pm

Felicity,  


My boss said this (your quot, in his field) is called dumbing down or maybe it should be called numbing down, a better way to put it.

You just 'ROCK', Felicity!

I just worry about all kinds of scenarios of children going into unsafe child care settings (thinking of our residential schools here in my country, which no longer operate here, but just imagine!), and so this kind of study makes so much sense.  
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felicity
Felicity Lee
Felicity Lee

2015 conference to benefit Treatment of Patient with Dissociative Disorder (TOP DD) Studies -

Post by felicity on 7/9/2015, 6:51 pm

2015 conference to benefit Treatment of Patient with Dissociative Disorder (TOP DD) Studies -


oh, I am so excited.  Just talked to Dr. Brand.  She would like to thank you all for your kindness -

They are on!!!!  And, we are having a conference that will help so many people -

All of this brings up so much for me also.  I can talk on and on - you know that.  So many children out there - which I include teens also - even young adults and what the heck, adults also - who struggle the same as we do with so many people who 'think' they know all about us - but, don't have a clue.  And, so many, who with education and awareness of trauma and dissociation 'could' do - they don't even realize.  

yes, there are the statistics - which are so staggering that I can't even wrap my head around them - but, each of those is a real person - one real child on the street or in foster care or considering su or whatever - and no one to recognize the symptoms of dissociation.  

And, this study IS international - imagine how much this means to the world.  

As I become more in touch with myself - and stop running, I can't find empathy for 'me'.  But, I know the street life of a young person thrown out of their house by abusive parents.  I know what it is like to be a throw-away kid.  And, I know what it is like to be so dissociated as not to care whether I lived or died then.  And, to see my 'friends' die in allies with no one caring even to look for their parents.  

And, mostly - nowhere to go for help.  No one recognized how badly we needed help, except the older homeless who took care of us.  

Once a therapist came in to talk to me when I was in juvenile hall.  The kindest man I ever met - he cared and understood me - so I kept him inside until recently, when I discovered no one ever came in that room.  He was a part that I created - a part of myself.  I was 14.  I can have empathy for 'her' - but, not myself.  That is DID - and, how many out there have DD's - a lot more than 1%, I am thinking.  

Ohhhh...... I am so excited - this will be the best conference ever!!!!!


Last edited by felicity on 7/18/2015, 9:29 pm; edited 1 time in total



     

Don't miss the Ivory Garden Conference this year!!

https://igdid.org
Who is Ivory Garden Nonprofit Corporation?

https://ivorygardensite.com/

Contact Pat Goodwin, MA
President: Ivory Garden Nonprofit Corporation

felicity4us2@gmail.com
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Promise
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2015 conference to benefit Treatment of Patient with Dissociative Disorder (TOP DD) Studies -

Post by Promise on 7/9/2015, 9:08 pm

2015 conference to benefit Treatment of Patient with Dissociative Disorder (TOP DD) Studies -


Exciting!!!!!

gin
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Re: TOP DD Study - Professor leads groundbreaking search for answers in mental health

Post by gin on 7/9/2015, 10:28 pm

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DragonLady
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Re: TOP DD Study - Professor leads groundbreaking search for answers in mental health

Post by DragonLady on 7/10/2015, 12:31 pm

Hope I am able to make it ... finances chancy now ... darn
Sharon/Kyle
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felicity
Felicity Lee
Felicity Lee

Re: TOP DD Study - Professor leads groundbreaking search for answers in mental health

Post by felicity on 7/11/2015, 10:27 am

I added your gofundme link to your signature so that people can help you by donating (anyone can do this - it was so helpful last year for folks) If you go to your account, there should be code for a widget - I can help you put that in your signature also - just email me. I love the gofundme accounts, because they also help promote the conference as well as helping us know who we can donate to individually. If you need financial help getting to the conference, please think about doing this. You can even do it by having a friend put the account together for you.




     

Don't miss the Ivory Garden Conference this year!!

https://igdid.org
Who is Ivory Garden Nonprofit Corporation?

https://ivorygardensite.com/

Contact Pat Goodwin, MA
President: Ivory Garden Nonprofit Corporation

felicity4us2@gmail.com
avatar
felicity
Felicity Lee
Felicity Lee

2015 conference to benefit Treatment of Patient with Dissociative Disorder (TOP DD) Studies -

Post by felicity on 7/11/2015, 11:20 am

2015 conference to benefit Treatment of Patient with Dissociative Disorder (TOP DD) Studies -

I wanted to let everyone know that this conference means so much to all of us.  Last year was amazing on many levels.  I think attendees were amazed at how much the conference changed their lives.  

1)  We did get to meet each other and other survivors - so many survivors attended.  Some whom I have known on the internet for like 10 years and never before met.  Wow - amazing.  People came from everywhere - internationally.  I think there were about 80 survivors who have DID who attended.  Most of us were already 'friends', but meeting each other in person was a special treat - and, meeting new friends - yeah - fun.

2)  I often travel alone, and it is intimidating every time.  I understood that when so many came from very far away, having it been the first time you traveled alone - that was scary in itself, not to mention, meeting new people in a strange environment, etc.  Having ventured out was quite an adventure and took a ton of courage.  You wrote that it gave you so much confidence when you all got home.  I was also so scared - never even being to a conference like that before - but, we did it - congratulations to everyone for a great conference.

3)  Never before has there been a conference like this where survivors, clinicians, professionals, and supporters were all invited to participate in the workshops and plenaries with such important speakers.  We did not designate who was who with name tags or in any way.  We didn't have a 'special' room for survivors - etc.  Everyone interacted with each other equally.  Many of us had never been to a conference like that - and, wow - we learned so much, and many bought the speakers books to learn more when you got home.  You all shared with your therapists, and they wrote amazed at how much they learned.  

4) And, the speakers wrote that the mixed audience was amazing - interested and engaged.  They were in the foyer and welcomed interaction with everyone.  To meet the speakers and talk to them seemed such an honor.  

5)  The clinicians and supporters who came also traveled quite a distance to learn about dissociative disorders from the presenters who are so experienced and knowledgeable.  Local attendees took advantage of the low registration and ceu's - and, also reported that the conference was something they had not expected.  There was a kind of energy everywhere that people noticed - no one could really explain it - supportive and safe.  

6)  Many of you expressed that the support - knowing that so many great presenters would volunteer their time to speak at a conference basically coordinated by survivors meant so much to you.  Knowing that we are supported, that professionals care that much was life-changing.  

So, on that many levels, the conference changed lives, was educational, and basically, met the purpose of the conference as defined by Ivory Garden.  

We are not taking any of this from anyone by fundraising for The TOPP DD Study.  It does not take preference away from the conference and each of our reasons for being there, but gives us one more purpose for having the conference - to also benefit an amazing study that, as we each go home, our efforts live on through the work that continues - I will be presenting more about this study for you all - as we promote the conference.

I just want you all to know that once we cover the expenses of the conference, the proceeds will be donated to the study.  This in no way will effect Ivory Garden or the conference at all.  It is quite exciting to be able to do this and have the best conference ever!! It gives us one more purpose for having the conference - an important purpose.  

Thank you everyone - including the speakers - and those volunteering your time - you are the best.


Last edited by felicity on 7/18/2015, 9:30 pm; edited 1 time in total



     

Don't miss the Ivory Garden Conference this year!!

https://igdid.org
Who is Ivory Garden Nonprofit Corporation?

https://ivorygardensite.com/

Contact Pat Goodwin, MA
President: Ivory Garden Nonprofit Corporation

felicity4us2@gmail.com
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Justiz43
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Re: TOP DD Study - Professor leads groundbreaking search for answers in mental health

Post by Justiz43 on 7/14/2015, 7:06 am


Lyra
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Re: TOP DD Study - Professor leads groundbreaking search for answers in mental health

Post by Lyra on 7/14/2015, 6:12 pm

My therapist has another client that she is participating with in the second part of this research study. Each week they watch the assigned video (they are intended to go in order), complete a discussion topic, and complete a worksheet.

She offered the materials for our sessions, to see if they might be useful to me and we could do them even without the checklists to submit for the study. I did the first six weeks. I didn't find them suitable to me right now, but found the videos, explanations, and worksheets to be extremely well done. Validating, informative, clear, empathetic but also focused on being responsible to ourselves for changing unhealthy and unsafe patterns in the present. The focus seemed to be on understanding your symptoms, grounding, and safety.

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felicity
Felicity Lee
Felicity Lee

2015 conference to benefit Treatment of Patient with Dissociative Disorder (TOP DD) Studies -

Post by felicity on 7/14/2015, 9:11 pm

2015 conference to benefit Treatment of Patient with Dissociative Disorder (TOP DD) Studies -


Yes - I think the concerns I have heard are about the studies  - please read the studies already published and the purpose of the TOP DD Studies.  That is important, because the studies 'are' for the benefit of not only studying DID and the affects of trauma on adults, but also how to best treat dissociative disorders.  

I agree that not everyone is on disability and/or unable to function.  I worked full time for 54 years - and went to school, graduated with honors, and completed two masters programs, oh - and raised 23 foster children and my own, sold cars and real estate and what else - oh, worked hard labor in the tomato fields - while at the same time, full-time as an accountant for the county - oh, I have a degree in accounting also.  At one time, I was making about $12,000 a month as a sales person literally working nearly 16 hours every day without a day off.  What else - oh - I taught special ed for middle school for quite awhile  (I think that was the most stressful job anyone can do - congrats to all teachers out there).  

I am on disability - well, I was - after I had a complete breakdown - I guess, I really wasn't superwoman after all - I really did think that I was - nothing could stop me.  I could do anything and no one was going to tell me differently.  It did not seem strange to me that I had to SI nearly everyday to keep going or that I never ate (didn't have time for that) or that I rarely slept or that I lost so much time or that I didn't give two cents whether I lived or died except to take care of the kids.  But, no one could tell - so - hey.  I had worked since I could remember - so, I actually made it some 30 plus years of never, ever stopping.  

Those who know me will totally believe that.  I am still driven, but know the limits - I remember the brain just snapping one day.  I remember crawling under the table at the hospital - unable to communicate - a baby - in front of my kids.  Yep, next step was disability.  there was no way that I could work - none - I really thought that if I just took a job, I would 'have' to do it - I could force it.  Sheesh - I got lost going to the bathroom three doors away.  They found me on the floor crying - one more time like that and my reputation as a teacher would have been shot.  I know what it feels like to not even recognize my own house, much less know when to go to work.  I remember 2 and 3 weeks when I had to be told when to eat and take my pills - the littles were stuck out.  

I was told that, had I been dx properly during my 20's, and had I not pushed myself so hard, had appropriate therapy and such, I would never have had the breakdown and could have completed my career.  

So - yeah - not bragging at all - just saying that we are all different and saying that many with dissociative disorders are trying really hard to get their lives back - so, that they can return to work.  That is not unusual - and, I think those who continue to function well are lucky and blessed.  But, of all the populations, those with DID and CPTSD have the most difficult time, but the most likely to recover.  I don't know.  

Everyone really is different.  And, it is okay to feel slighted when you work so hard to keep going.  But, it is okay to also work hard to function through difficult days to pay bills and live on a teeny tiny disability check.  I know when I went on disability, I didn't want to live anymore.  My life was over - it is a very difficult thing to accept.  But, I accepted and do what I can do to help others when I can.  I don't know - just saying that these studies are important for people who not only live on disability, but can't even find a therapist who know anything about DID.  right?

Anyhow - the conference is going to rock!!


Last edited by felicity on 7/18/2015, 9:31 pm; edited 2 times in total



     

Don't miss the Ivory Garden Conference this year!!

https://igdid.org
Who is Ivory Garden Nonprofit Corporation?

https://ivorygardensite.com/

Contact Pat Goodwin, MA
President: Ivory Garden Nonprofit Corporation

felicity4us2@gmail.com
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felicity
Felicity Lee
Felicity Lee

Re: TOP DD Study - Professor leads groundbreaking search for answers in mental health

Post by felicity on 7/14/2015, 9:15 pm

Lyra, that sounds really good. I would like to be involved in the study - I think that I was supposed to, but I don't know what happened.



     

Don't miss the Ivory Garden Conference this year!!

https://igdid.org
Who is Ivory Garden Nonprofit Corporation?

https://ivorygardensite.com/

Contact Pat Goodwin, MA
President: Ivory Garden Nonprofit Corporation

felicity4us2@gmail.com
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felicity
Felicity Lee
Felicity Lee

2015 conference to benefit Treatment of Patient with Dissociative Disorder (TOP DD) Studies -

Post by felicity on 7/18/2015, 9:21 pm

2015 conference to benefit Treatment of Patient with Dissociative Disorder (TOP DD) Studies -

We are getting more and more excited about this conference.  It is going to be so awesome - I am looking up the studies that the TOP DD have done.  

Check out the team who is doing all of this work - http://www.towson.edu/topddstudy/team.asp

I am glad that we can be of financial help by fundraising for them at the conference.  What they do and have done is amazing - check it out - let me know what you think.



     

Don't miss the Ivory Garden Conference this year!!

https://igdid.org
Who is Ivory Garden Nonprofit Corporation?

https://ivorygardensite.com/

Contact Pat Goodwin, MA
President: Ivory Garden Nonprofit Corporation

felicity4us2@gmail.com
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