Monday

Clinical Trials

Functional Movement Disorder RESEARCH: United States-National Institute of Health (NIH) Bethesda, Maryland.

Contact:  NIH Neurological Movement Dept.

Awareness videos

Fact :  ’….Comparing organic dystonia with [functional] dystonia revealed significantly greater regional blood flow in the primary motor cortex, whereas psychogenic dystonia was associated with significantly greater blood flow in the cerebellum and basal ganglia…’

Wednesday

Thursday

Fact day: Share a fact

Fact: Functional Neurological Disorder effects women most often than men.

Friday-

Fact: FND can be as debilitating as Parkinson and MS.

Tell your story of courage.  Many have gone through the hurt and pain of a misunderstood diagnosis.  Trauma buried alive will never die.  If you have buried painful medical memories alive and feel it would help to dig them up and get rid of them, then now is a good time.  If you would like to have your story possibly used for awareness information then send story to bridget@fndhope.org.

 SATURDAY APRIL 13, 2013

FUNCTIONAL NEUROLOGICAL DISORDER /

CONVERSION DISORDER AWARENESS DAY

WEAR ORANGE, GREY, OR BLUE AND SPREAD THE WORD.

We choose not to suffer in silence any longer.  Share a fact, video, your story, etc. Celebrate YOU!

You are strong and courageous.

Be the best YOU

How will you Unite and change the world?

Lead psychiatrist for DSM-IV voices opposition to DSM-5′s new ‘catch-all’ criteria in BMJ, today

Come May, everyone with chronic medical illness or long-term pain – from cancer to coronary disease, MS to myalgia, becomes a potential candidate for a new mental health label.

Today, BMJ publishes a commentary on the DSM-5 ‘Somatic Symptom Disorder’ by Allen Frances, MD, who chaired the Task Force for DSM-IV, with contribution from Suzy Chapman, Dx Revision Watch:

Full article available without subscription, here:

http://www.bmj.com/content/346/bmj.f1580

We at FND HOPE would like to Thank Suzy Chapman and Dr. Allen Frances for the time and effort they have spent fighting for those effected now and will be effected by the Somatic Symptoms Disorder and Related Illness heading.

FND HOPE Response to comments:

On behalf of those with a Functional Neurological Disorder which has been listed under the Somatic Symptom and Related Disorder heading, we are admittedly against the the SSD section in the upcoming DSM-5. We have actively voiced our concerns over the past year with our pleas falling on deaf ears.
The fact of the matter is the way it is written the term Somatic will become just another term for Hypochondria. Concern lies in how the DSM-5 Somatic Symptoms criterion, or lack there of, will read and be overly diagnosed. This will cause those without a clear reason for symptoms to be quite possibly wrongly labeled.
There are many illnesses that could fall in this category that are not fully understood and in some eyes seen as questionable. Whether it be from lack of research or technology there are still medical mysteries and questions that need answers. It takes time and energy by not only physicians but also patients and caregivers to find coping methods when they are not readily available. A desire for better health and/or refusal to accept a diagnosis a patient knows is not accurate is not synonymous with illness anxiety. What could very well be ill perceived by a physician and possibly even an annoyance as over involvement of a patient should not be misconstrued with a negative stigmatic diagnosis such as Somatic.

FND patients run the risk of being the first group targeted with the Somatic label.

-Women are most often labeled with a FND diagnosis.

It is insinuated that those with what are referred to as functional symptoms are in bodily distress and this is the reason for their symptoms.
You may notice the term FND being used instead of the proposed FNSD. We will stand our ground of not having symptoms added as part of the name. No other illness is this the case. Those that suffer with this debilitating disorder will not have their lives reduced to symptoms. The fact that the majority of all research has focused in the same general direction in the past and has yet to come up with a *medically explained reason does not mean that there is not one. We will also not use the Conversion Disorder label for reason of lack of objective evidence based research to support the ideology.
We acknowledge the SSD work group for the psychological criteria removal as a step in a positive direction. Clarifying that many of those with a Functional Neurological Disorder diagnosis do not have the expected mental health illnesses nor are they “converting” any past trauma to be the causation of their physical symptoms. We are hopeful to eliminate the emphasis of only psychological causations to these symptoms. It does not make sense to have such a focus in psychology when change of behavior is not the key issue nor does it always manifest. However, loss and/or change of neurological function is the prominent feature and needs immediate attention. This is not to diminish the psychological connections that have been connected to the disorder, rather, to address the physical symptoms that need to be attended to in a timely fashion.
Do not mistaken our stance against this criterion as an attack on others that suffer from illnesses embodied in the Somatic label. The argument we are trying to make is: the coding as it sits will misdiagnose many and then prevent proper care. Yes, some people do suffer from Somatic Symptoms and they should not be looked down upon; they should be properly cared for and treated with respect.
Many who suffer with chronic illnesses for whom are subjected to horrific pain with out proper care and effective treatment plans will of course run a risk of having co-morbid depression and health anxiety. This should be cause for immediate medical attention and not dismissed as Somatic.
“It is debilitating for individuals suffering from multiple persistent somatic symptoms and distressing preoccupations. The diagnosis of Somatic Symptom Disorder may be a logical next step in recognition and treatment of these patients.”
A diagnosis of Somatic Symptoms Disorder in the new DSM-5 will not be helpful nor beneficial for anyone who receives this label. Patients that are listed under the heading (not even given the label mind you) struggle everyday with the stigmatism that is implied with being listed with this heading. It can only get worse having the actual Somatic diagnosis added to any patients file including Cancer, Stroke, Autoimmune, Cardiac, FND, etc. sufferers. Those that are ill would appreciate effective treatment plans, answers to their concerns, their voices to be heard and addressed, and not diminish the day to day struggles of their illness to bodily distress or health anxiety.
Our contention is not with the group itself nor the doctors trying to research and treat those with this label. For the reasons stated above, we are against the changes to the SSD section in the DSM-5. The label given to illnesses under the Somatic heading and the Somatic label itself destroys lives.
We have concern with the SSD workgroup and to a “we will fix it later approach”. They are correct that the DSM-4 was in dire need of change, but for the better is not the direction they have gone. They have ignored the pleas to fix this section and fix it right the first time. There has been reasonable time to come up with an adequate criterion, Yet they have fallen short. What makes anyone think someone will come back and fix these mistakes with a revision in a timely matter? How many more people will die of real illness while being labeled Somatic, how many will be sent home to suffer in excruciating pain?

Must we all remember this is not about a book; it is about lives. These lives and labels may intertwine and live in your home one of these days.

FND HOPE
non-profit patient advocacy organization
www.fndhope.org
***A medical explanation for some is getting closer.

http://www.rsds.org/pdfsall/JNIP-article-Cooper-Clark.pdf

We at FND Hope advocate for patient rights for those diagnosed with functional disorders.

We appreciate ABC News for including our website in their article:

‘ New Psych Disorder Could Mislabel Sick as Mentally Ill ‘   please take the time to share and comment on this article.

http://abcnews.go.com/Health/somatic-syndrome-disorder-mislabel-sick-mentally-ill/story?id=18606406&page=2

I and several others were interviewed bringing a diverse look at how medical labels can have an impact on our lives and level of health care.  I was fortunate to have the support of my local physicians at Steele Memorial Medical Center to look into my symptoms that were not functional.  I was then referred to a brilliant Hematologist where I was then diagnosed with Sneddons syndrome along with Seronegative Antiphospholipid Syndrome.  This is not the case for all FND patients, but I continue to advocate for others that they may have better health and effective care and treatment plans.              Bridget Mildon-founder FND Hope

PLEASE SHARE AND HELP SUFFERERS, FRIENDS, FAMILY, SUPPORTERS, MAKE A CHANGE & SPREAD THE WORD.

Go to www.NeuroFilmFestival.com to see all 79 films. 

3rd segment discusses

CBT

Treatment plans in an ideal world

Need for proper diagnosis given in an effective way.

Dr. Edwards is a Neurological Movement Disorder specialist

DR. EDWARDS ANSWERS FUNCTIONAL NEUROLOGICAL DISORDER QUESTIONS-2

FND Hope asks Dr Mark Edwards questions about Functional Neurological / Conversion Disorder.          2of 4 segments.

QUESTIONS AND TOPICS DISCUSSED IN SEGMENT #2 :

CLICK LOGO TO VIEW SECTION 2 DR. EDWARDS Q & A

PETITION FOR CHANGE

http://www.change.org/petitions/medical-profession-all-over-the-world-research-in-to-functional-disorder-non-epileptic-attack-disorder?utm_campaign=autopublish&utm_medium=facebook&utm_source=share_petition

PLEASE CLICK ON LINK ABOVE AND SIGN THE PETITION.  LITTLE IS KNOWN AND UNDERSTOOD ABOUT FUNCTIONAL NEUROLOGICAL DISORDERS AND IT IS TIME WE PUT OUR BRAINS TOGETHER.

Change can be one of the most frightening experiences as humans we encounter.  Even if it is a positive transformation, it is human nature to be a creature of habit.  It is why we continue to engage in behaviors we know are not for our own good.  There are times we choose the change and then there are those times we do not get the luxury of choice in the matter.  These metamorphoses rarely go well when they are met with resistance.  Acceptance of change is not confirmation that it is what is best for us, but a transformation of adaptation is.

Making the most out of a particular situation is always optimal and gives us the best opportunity to grow.  We have life experiences because we are supposed to change. We are meant to remodel, remold, reshape or tweak ourselves, if you will.  We each hold the power within us to decide what we allow to alter ourselves and how we will then be defined.  Do you embrace the new you or do you cling to your old comforts?   How stubborn would we be if we completely refused to evolve at all?

One of the definitions of change is to move one from another.  I think this to be the best definition and one that can help find balance in transformation.  This definition gives insight as to how change is not necessarily better or worse, but defined as different.  As illness effects who we are and begins to alter our life it is an opportunity to become different, but does not have to mean worse.

There is an innate part of ones self that is how we define who “You” is.  It is our individual foundation and substructure of  “You” that has most likely been shaken by trials in our lives such as poor health.  The core of who you are, what you believe, and what you know to be your true “You” is worth fighting for. Personality, moral conduct, heredity, and the things we value most are a part of how we value ourselves and others.  It is important to build a strong substructure of who “You” is.  By doing so, then the trials and challenges of life will not be cause to rebuild, but will minimize change as an opportunity to remodel, remold and reshape who we really are and how we define and accept ourselves.

To allow yourself the freedom of accepting you and where you are in your life right now is empowering. Accepting doesn’t mean you give up hope for a cure or change in health.

Accepting is seeing the good in yourself and being ok despite the change.