Safety for People with Autism and Other Hidden Disabilities

Red Medical Cross Picture with White Medical Symbols Inside It

Attribution given;  <a href=”http://www.freepik.com/free-photos-vectors/background”>Background vector designed by Olga_spb – Freepik.com</a>

I missed a week of blogging due to the difficulty I’ve been having with my Dysautonomia and my ASD (Aspergers) and the effects of the trauma from what has happened at Emory. I’ve experienced several full-on meltdowns due to all the stress and the barriers I’m encountering in trying to get my healthcare back on track.  

Meltdown

I’ve been having fitful sleep interrupted by nightmares which are clearly due to the bullying I’ve suffered. The theme is always some sort of sabotage. In the nightmares I’m trying to achieve some goal and somebody comes along and destroys whatever I’m doing and I end up in some sort of danger as a result.

In one such bad dream I had lit a match in order to relight the pilot light on a stove and someone came up behind me and knocked the match out of my hand.

Closeup of a business man with his hands behind his back and fin

Closeup of a business man with his hands behind his back and fingers crossed. Torso and hands only, man is unrecognizable.

It fell from my hand and behind a dresser. I tried pushing the dresser aside but it was too heavy. Meanwhile the room quickly burst into flames as the fire spread from the carpet to the drapes and soon everything was engulfed. I then found that I couldn’t move to escape it no matter what I did. Just as I was about to be burned alive I woke up in a panic. It took quite awhile before I could fully come out of it and realize it wasn’t really happening.

Burning Up

In another dream  I was getting ready to mail a very important letter and I was in some sort of cabin in the wilderness that was at the edge of a steep canyon. In order to mail the letter I had to climb down somehow on the edge. There was a crack in the wall handmade from plywood overlooking the drop below and the letter got stuck in that crevice. I tried to pull it out and was relieved when I could do it, but as soon as I did, along came somebody from behind me who swiftly pulled it from my grasp and shoved it through the crack in the wooden wall. The letter fell and was gone hundreds of feet below, never to be retrieved again.

House at Edge of Cliff

Alot of times the sabouteur comes from behind me and I don’t see their face. I can’t tell if it’s a man or a woman because they never say anything and I wake up before I can turn around and look.

In addition to the element of danger in these dreams there is alot of uncertainty.

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All this got me thinking about just how crucial it is to build a plan for safety. People with Autism and other hidden or misunderstood conditions are especially vulnerable to abuse and neglect in a number of settings; for instance, police officers often mistake people with epilepsy for being publicly intoxicated,

Glowing brain

and many people with such conditions as Autism, Dystonia, and Dysautonomia as well as other poorly publicised conditions are mistreated in healthcare settings just as I was.

This is something that is not spoken about nearly enough in the news or in other public forums but doing so may very well save lives.

Here are some things you can do to help prevent falling victim to those who might abuse, neglect, or exploit you thinking you’re an easy target because you’re in a wheelchair, you’re frail, have communication or cognitive difficulties, or have other disadvantages which may leave you in a compromising position.

Safety First Life Preserver

1) Wear a medical alert bracelet;

Try to get as much pertinent information on it as possible that people would need to know in an emergency and/or if you are misinterpreted in the workplace, school, by medical personnel, or law enforcement, or in any other public place.

If you can, list a contact person you know who is willing to be contacted and can advocate for you to explain your needs. Nowadays there are many types of bracelets on the market that you can buy. Some of them are even nice looking! See some medical alert bracelets on Etsy .

2) Carry a medical alert card at all times;

You may be able to fit even more information on the card than you can the bracelet but you should try to have both since somebody may not think yo look in your wallet if you are unable to tell them to do so. This organization came up with some Autism Alert Cards you can customize. This company located in the UK sells bracelets that include cards with them.

3) Carry an official diagnosis document at all times;

this can be any official letter you have which proves your diagnosis (if you have this documentation). If not, you should speak with someone about obtaining one. This can be a testing report, a letter from a doctor or therapist written to whom it may concern, or if neither are available, something from your medical record with your official diagnosis on it.

Taking notes

Ideally you should have something not only listing your diagnosis but specifying what your limitations and special needs are, any medications or treatments which need to be given, etc. If you have a supportive doctor or other medical professional, his/her name and contact number should be on this paperwork if at all possible.

4) Bring a buddy with you to the hospital;

In the ER

If you have some advance notice that you’re going to the ER or checking into the hospital on direct-admission try to arrange for somebody to come with you.

Emotional Support

It should be someone whom you have spoken with in advance about your needs and limitations; preferably somebody assertive who will not have a problem speaking up to authority figures in your defense while still remaining calm and rational.

This person can keep an eye out for you and can also act as a witness in case anything goes wrong. If they have a cellphone they can also videotape if somebody is mistreating you.

On Cellphone

If you don’t have anyone in your life to fulfill that role be sure to contact one or two people before leaving and let them know which hospital you’re going to (and if possible give them the phone number so they can call and check on you). Bring your laptop or some other mobile device that has internet access. That way you can give them updates.

Making Plans

One of the things I learned as a patient advocate years ago is that people who have someone actively checking on them are less likely to be abused or neglected because it’s more difficult for perpetrators to get away with it and the likelihood is that they’ll get caught. This is often enough of a deterrant and they won’t even attempt it. (I’m pretty sure that if I had had somebody willing to go with me or meet me at the hospital in December that my incident wouldn’t have ever happened).

Taking these steps can’t guarantee you will never be victimized but they can make it much less likely.

If you do find yourself in a situation in which you’re abused, neglected, or exploited, be sure to document as much as you can about exactly what happened. Take down names, times, dates, what they did that they shouldn’t have, and/or what they didn’t do that they should have, etc.

Then I would recommend contacting The Dept. of Health and Human Services and filing an Office of Civil Rights Complaint.

Filing with State regulatory agencies in my experience is often a complete waste of time, as usually doctors are automatically believed carte blanche by such decision-making bodies and therefore it is not a level playing field. Usually such investigations consist of review of the records to see if anything “not meeting the standard of care” is documented (and of course doctors aren’t going to rat on themselves or each other in a patient’s record), they write up the perpetrator’s side of the story, and send it to the patient.

In some of the more progressive states filing a complaint with the state medical licensing board might yield results if the malfeasance was committed by a doctor, but often doctors are reluctant to discipline their peers (the medical boards utilize doctors to investigate the claims and determine the outcome, if any). Generally they have the option of making any action taken either public or private. If they take private action they might keep that secret and not even let you know they are doing anything about it at all.

How You Can Help Now;

You can also send letters now to HHS asking that they make Institutional Bullying of medical patients/people with disabilities an added Civil Rights violation in the same way it’s interpreted in statutes for Institutional Racism. Please also ask that clear-cut consequences be specified in any new legislation and/or amendments.

capitol-diagram

Given that this is an election year this is the perfect time for you to send your letters! The more of us who write and make our voices heard the sooner we can make this type of abuse a thing of the past and prevent others from having to endure these atrocities in the future.

 

Sylvia Burwell 1250x650

 HHS HeadQuarters                                                                        

US Dept. of Health & Human Services                                

Attn: Secretary Sylvia Burwell                                                  

200 Independence Ave., S.W.                                

Washington, D.C 20201

Phone (Toll Free); 1 (877) 696-6775

Go here to file your official grievance if you have been discriminated against because of your condition and/or not given reasonable accommodations for your special needs. You can file by snail mail, email, fax, or via their online webform. (All communication options and requirements are explained on their website on the paged linked-to above).

Safe place .svg

Although this is covered under current law there are still many people who unfairly make allowances for it when this happens to people who are ill and/or disabled in a way they would not with other minority groups. There should be a zero tolerance policy for this type of discrimination and a recognition by all that this is every bit as heinous (in many instances even  more so because this population is at a greater disadvantage than most other minority groups)

And now for a good protest song;

This Land Is Our Land

 

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Medical Record Inaccuracies and Doctors’ Personal Agendas

Doctor in the office

Good charting is a skill that can be learned, but when the basic ethical principles involved are not adhered to it can actually do patients more harmed than good. As they say “The pen is mightier than the sword” and that is so true!

Charting on a patient carries power, but with that comes responsibility to carry out this activity with grace and selflessness, never forgetting that you are commenting on aspects of that person’s life and this very act can influence how the patient is treated  by others who read it. One must resist the urge to “think out loud” in a patient’s medical record where such conjecture might not be in the patient’s best interest and thus hinder their care.

Hot idea

Doctors, if you are using a patient’s medical record to further your personal agenda or hypothesis in conflict with the patient (or with another doctor indirectly) you are not benefitting your patient, so please stop it.

Stubborn as a mule

The medical record is not your personal journal, it is not the place to grandstand, to take shots at the patient, to show your ego, nor is it the place to take out your frustrations from home.

Given the fact that you assume the patient will not likely read what you’ve written it might be tempting to fill the chart with your own bullish rehetoric, but this says more about you than it does about the patient and therefore it does not belong there.

Buffalo in winter cold

When I worked officially as a patient advocate under the federal Protection and Advocacy system devised in 1986 by legislation enacted by Congress I attended extensive training sessions on various aspects of the job and I learned alot about what a proper chart is supposed to look like.

We used to have an independent contractor evaluate all advocates’ charts on patients nationwide, and my charting was actually deemed the best in the country of all Protection and Advocacy systems.

Taking notes

There are certain principles that exemplify skillful charting on a patient.

1) Charting must be accurate and precise

2) It must be relevant

3) It must be written to benefit the patient

Accuracy and Precision 

This is pretty self-explanatory but there is often confusion as to how to interpret what is “accurate” and what is “precise.”

Let me start by saying that you are only resonsible for charting what you know to be a fact. This does not mean that what you don’t know is not a fact; one to be disputed in the chart. For example; upon receiving my doctors’ notes last week, I discovered that my pulmonologist had written some things attempting to question my diagnosis of Sarcoidosis. Why he would do this when Emory has already confirmed the diagnosis seems suspect in and of itself and smacks of personal agenda.

My diagnosis was obtained by objective tests 13 years ago. 

I had a Gallium scan and other test results such as labs which showed idiosycratic markers for the disease. That is a fact.

There is no disputing that, yet the doctor did. It is true that a follow-up gallium scan this year indicated it was probably not actively in flair now, but that does not invalidate the diagnosis itself. It only means it’s not in flair at this point in time and indicates that my current symptoms are coming from something else. It has not magically disappeared as it’s a chronic and incurable disease. It’s possible that this pulmonologist may be using outdated understanding of the disease (long ago it was believed to spontaneously “go away”), but this has been disproven with the advent of more understanding of the physiological workings of the disease.

Sarcoidisis was once thought only to be a lung disease (hence why it’s often treated by Pulmonologists), but now it is known to be a multi-system disease that can and does affect every part of the human body. It was once thought to be only characteristed by non-caseating granulomas, but has since been shown to be much more complex than that and its inflammation manifests in many more ways than once believed.

It is now undrstood by the top experts in the field to be associated and most likely caused by intracellular pathogens. It is not merely an autoimmune response after an offending pathogen has been cleared from the body, but instead the resulting inflammation is a response of the body detecting a pathogen it just can’t locate and effectively kill.

My Pulmonologist, Dr. H perpetuated further inaccuracies when he charted that my Dysautonomia was “self-diagnosed” and and in his insistance on continuing this assertion in the medical record pretty much accused me of lying given the fact that I’ve told him that this came from a doctor who treated me with IV Saline at Piedmont hospital; not from me.

It is a fact that I knew nothing about Saline as a treatment modality for Dysautonomia before the doctor ar Piedmont did a blinded experiment (unknown to me at the time) by putting me on Saline infusion, then taking me off for 24 hours or so to see what happened symptom-wise.

The doctor who tried this did not explain any of this until after he trialed this method on me. This prevents any bias I could have had and thus rules out placebo effectThe fact that I responded positively when treatment was given and negatively when it was withdrawn indicates that reduced blood volume is a factor in my Dysautonomia.

Dr. H glossed over this in his charting, disregarding what I’d told him. He made no attempt and showed no interest in verifying what I had told him, merely assuming it wasn’t true. Why? The answer to that lies in an area of his mind only Dr. H can answer, but one thing is clear; that the subtext in his charting conveys that he does not believe me.

How does this serve the patient? Answer: it doesn’t. It only serves to undermine the patient. He went on to state in the record that I was “suspicious” and “defensive at having my opinion challenged.” Hmmm. Sounds like projection.

During our last appointment he got very huffy and puffy that I wouldn’t just accept as fact his theory that my problem was psychiatric in nature and wanted to end the appointment because I wasn’t buying it. He said ” Do you really think Neurlogy is helping you?” Then was very offended when I told him I wanted to give Dr. V a chance, and his statement was “OK, I’ll take a back seat to Neurology” as he rolled his eyes and heaved a huge sigh with matching dramatic shoulders shrugged up, then down.

His charting reflects that he was agreeing to that course of action, yet he contradicts that with a lengthy monologue which tries a bit too hard to invalidate my seeking expert assessment out of state (which Neurology supports my obtaining).

He says that going for these assessments is “premature” yet he suggests I go to a psychiatrist” (which should be the last resort after everything else is ruled out, and it hasn’t been). There are alot more tests that have not yet been performed before throwing me in that dustbin. For all his talk about lack of “proof” and “evidence” he has not one shred of proof that this condition is in any way psychological. Besides, psychiatrists are generally in the business of prescribing medication (indicating a physiological cause for which medication is assumed to have a beneficial effect on a patient).

Field of Medicine

So which is it, Dr. H? Let’s stick to the facts.Let’s be accurate and precise rather than subjective and vague.

1) I have dysregulated blood pressure,

2) chronic constipation,

3) near syncopal episodes,

4) Muscle weakness and spasticity, and severe fatigue

5) Etreme thirst and need ice water by the bed at all times

6) GI upset; nausea, lower GI spasticity, inability to eat solid food for weeks at a time

7) I’ve been hospitalized and treated for such problems, and said treatment improved the symptoms without my knowledge of Dysautonomia at the time (I did not read up on it until after it worked).

8) Dysregulated sleep/wake cycle (evidenced by 3 sleep studies that he ordered and interpreted)

9) I have Central Apnea and Biot’s Respiration; both indicative of a “central process”. Patients don’t develop these for no reason. Idiopathic does not equal psychological or psychiatric. It just means the cause has not been found yet and it requires further investigation.

Solving the puzzle

Relevance

All the wild speculation about my condition possibly being in my head is a distraction from the task at hand and has derailed any unbiased investigation. Dr. H went way off-course with only the lack of an explanation for all my symptoms as his reasoning for wanting to send me to a psychiatrist. I don’t see how this is at all relevant, and seeing as he figured I wouldn’t see what he’d written, the intent could only be as a coded alert to other doctors who might be looking at my records to view me as less than credible. None of my sleep problems were addressed in that last appointment with him although I’d told him that the sleep attacks had returned. He was only interested in invalidating me along with all my symptoms and even my established diagnoses, as though in one fell swoop he’d completely come to revile my very core essence and viewed me as suddenly unworthy of even the most basic dignity afforded to patients because they are human beings who deserve compassion and empathy.

Grass Roots Political Organizing

It was this “othering” that is unmistakably present in the room, that visceral feeling that makes the hair on the back of your neck stand up when you encounter it.

Written To Benefit The Patient

Charting on a patient must be written with the intent to do something useful for the patient.

What do you intend to accomplish?

What is your game plan?  

How are you going to go about helping the patient? 

These interventions should be developed in partnership with the patient, as the patient is the one who must be happy or at least content with their healthcare outcome since the patient is the one who must live inside their own body.

Stress and Strain

You, the doctor can go home and forget about the patients’ pain, fatigue, GI symptoms, movement symptoms, syncope, or other medical problems. The patient, however does not have that luxury.

Dr. H. stated in my record that he was going to go along with Neurology, but Neurology (Dr. V. to be specific) had changed course and was now on my side and no longer doubting that I have Dysautonomia. Dr. V had a very succinct plan which partnered with me to obtain the full assessment for my Dysautonomia, laid out in bullet points.

She did put the Aspergers assessment on my chart as a goal (which although I asked her at the time to keep this off the record she did not), but be that as it may, this was neuropsych; not psych as Dr. H was so blithely wanting to push.

Do the pieces fit

Did he read her notes? I wonder. Perhaps he assumed that she would go in the direction he was heading and when she didn’t he lashed out using his charting as a weapon to defend his wounded ego.

Since I believe they can edit records later I have no way of knowing when Dr. H entered the voluminous material pushing the psych agenda. It may have been soon after I left his office or it may have been later once he’d seen that Dr. V. was not thinking that my problem was in my head.

Dr. V. commented on June 3rd at my last appointment that she had noticed my blood pressure had been running low. Although she did not know the underlying cause of the Dysautonomia she did not dispute it in any way, and was welcoming my going to these consults out of town, admitting that Emory does not have the facilities nor expertise to do full autonomic testing here.

Unlike Dr. H., her notes this time were constructive, laying out a plan that I was in agreement with, a list of numbered goals, (and sticking to the overall goal which was to find the underlying cause of my Dysautonomia and ultimately treating it). That is more like it.

Perfect

To this day I believe that Dr. V. in her heart is sorry for how she misjudged me on our first meeting and truly wanted to make up for the scathing rush-to-judgement that is forever branded on my medical record.

I don’t know why she did not edit it when she returned from maternity leave, but maybe the reason was to show that sometimes doctors can be wrong and that they can also admit that they were wrong and can change later. It takes a bigger man or woman to admit when you made a bad judgment call and correct it than to stick to your story even once you realize your first impression was incorrect.

It did hurt to know that what she’d written the first time was the straw that broke the camel’s back and resulted in both my GP and Pulmonologist’s diverging from me and the impetus for the dissolution of those doctor/patient relationships, but she is not solely responsible. They have a part in it too, and it’s disturbing that either of them would so quickly dash my credibility on the rocks because of some other doctor’s opinion who had just met me. Those two had known me as a credible person; one for about 1 year, and the other for 13 years.

They should have known not to be swayed from my side based on some opinion espoused by a doctor that had no chance to know me as they had and had only a limited snapshot of the circumstances under which I came to the clinic.

In the final analysis Emory’s Administration didn’t allow things to work themselves out and to set the record straight once more data could be obtained. They were too invested in making sure it never would be worked out, too invested in keeping the record toxic and defamatory so that I could not obtain care in or out of Emory.

In their fervor to interfere between doctor and patient we may never know if all this might have ultimately been put in the past and whether the relationships that still existed would have become stronger once  more facts were elicidated upon further testing.

Perhaps this could have been a model, a learning experience for other doctors to see how things can evolve over time and how things can be put back together after such a fire-storm of controversy sets the record on fire.

Burning Up

Maybe behind the scenes Administration thought such a mess had been made by their various employees that it was irreparable, but the most  unfortunate thing of all was that by the time they started blocking people from working with me things had died down considerably, those who had openly turned against me were gone, and when Dr. V. returned it looked as though things might have a happy ending afterall.

Androgynous Black Woman

Just as my care made a constructive turn, I encountered a brick wall; the corporation added insult to injury, swooped in, and never allowed the answers to play out.

Running into a wall

Instead of becoming a teachable moment for other physicians watching it this case became a prime example of how not to do conflict resolution when you discover that agents of your company have engaged in unethical charting on a patient.

Educating The Doctors of the Future; Affliction As Strength

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I had an interesting discussion on Youtube with a medical resident, and as you know if you’ve been following my blog regularly I am very interested in opening the minds of new doctors just getting their feet wet in the field of neurology. This guy was educated in the typical way most neurology residents are taught and after viewing a woman’s video who was having facial spasms while she was watching TV he posted that he thought her disorder was “functional”.

The model used currently to differentiate “functional” from organic neurological disease/disorder is usually to check whether;

1) symptom patterns coincide with known patterns associated with “organic” neurological diseases/disorders.

2) a presenting symptom or group of symptoms stops during a period of distraction, thus appearing inconsistent.

(Keep in mind that distraction tricks are often used by patients with established Dystonia not considered “functional” such as touching the area involved or nearby which have the same effect of disrupting faulty brain signals and often do stop the symptoms temporarily).

I responded back that such a mindset does a real disservice to patients and often stands in the way of early detection and treatment of a neurological disorder.

He posited to me that there is a real category of Somatoform Disorders at the same time acknowledging neither Psychiatry nor Neurology wants to deal with those, but likens the stigma to that of diseases such as Major Depression or Bipolar Disorder. This was my response to that statement of his;

 “Your second sentence spells out what makes it different from Major Depression or Bi-polar disorder. Psychiatrists don’t brush off those two conditions and they don’t confuse those with “feigning”. A functional diagnosis is way more stigmatizing because unlike the two mood disorders you used as examples they don’t believe functional diagnoses have a biological basis. There are imaging studies and neurotransmitter studies pointing to an underlying neurochemical basis for mood disorders, and now genetic research linking certain genes to them. The same has not been researched in those categories labeled as “functional”.

 When you really think about it just about all the “mental” disorders are now thought to be brain diseases (AKA; neurologically based). That is exactly why psychiatrists prescribe medication for them.  There was a time when Schizophrenia was believed to be behavioral and caused by bad parenting. As long as doctors treated it accordingly patients didn’t recover. It was only when enough research money was put into it to investigate its biological basis that advances were made and patients improved through more targeted medications. Dr. E. Fuller Torrey was instrumental in uncovering alot of the biology behind that disease. He continues to research now through a private research center and is finding out that the disease is not only characterized by a disordered Dopamine receptor system, but that there are intracellular pathogens involved in its cause which are not detected by commercial testing methods. While I must state that I disagree with Torrey’s focus on involuntary commitment of such patients, he was one of the first to hypothesize and quantify with research that Schizophrenia is in fact a true brain disease, removing it from the realm of “it’s all in the patient’s mind.”

 I would bet that if enough research were put into studying what they call “functional disorders” scientists would find a biological/neurological basis for it. I’ve been reading lots of research papers and I think I have an idea what it really is. If you read some of the latest studies on Fibromyalgia and on Dystonia you’ll be very intrigued at what you’ll find. Apparently there are studies that have elucidated some very good data suggesting that these disorders involve faulty signals and neural pathways.

The same areas of the brain involved in emotions are activated in disorders such as Fibromyalgia, Chronic Fatigue Syndrome, and Dystonia as well as other disorders currently called “functional”. This doesn’t mean these are “mental illnesses” although people can experience mental symptoms (but not always). It merely means that the signals coming through those brain regions involving pain and/or movement are often impaired and become crossed with emotion-bearing pathways.

 If you are going into either the field of Neurology or Psychiatry I hope you will dedicate yourself to these “gray area” diseases/disorders and look for these quantifiable markers. You can do that with PET, fMRI, and a number of other state-of-the-art imaging methods, as well as on a more micro level look for genetic and neurochemical markers involved. If you look and put in the time you will find them eventually (and maybe make a name for yourself in the process if you should publish your findings in established medical journals).

 Taking on such an endeavor would go a long way toward doing justice to these patients with such orphan diseases/disorders and remove the stigma associated. I’m sure in time researchers will identify a physical basis, and targets will be found for which they can develop medications that really work (as long as doctors care enough and are unbiased enough to look and believe patients are worth it).

 I really believe “mental” as opposed to “physical” illness is an old paradigm and that the future of science will bear that out as more research comes out. Think of a computer as a model for instance; no software can function properly in a computer if the hardware is dysfunctional.

 Autism is a human model that illustrates this quite well. While you may or may not find any structural differences in the brain, it is known and pretty widely accepted that it is a difference in the way these people are “hard-wired”. It is listed in both the DSM and the ICD. Although it has “mental” or “behavioral” manifestations, it is not a “mental illness” per se, but a neurodevelopmental disorder. Autism is also associated with disordered brain signaling/processing of sensory input; same as the diseases/disorders I mentioned in my 4th paragraph. You will notice that many interventions recommended for autism are not covered by health insurance. This is a particular type of “othering” supported by insurance companies.

 The same goes for delineating “Dental” from “Medical” for purposes of health coverage. Take a look at what some dentists are doing for people with movement disorders (for the most part private pay and unfortunately out of reach of many most in need who could really benefit). Look up Dr. Stack/Dr. Jeffrey Brown, Demerjian, and several others doing some very cutting edge work in that subspecialty.

 In Dystonia, look up Juaquin Farias PhD. and his work in neuroplasticity. He is Director of the Neuroplastic Training Institute Toronto and adjunct professor at the University of Toronto at the Music and Health Research collaborative. He started out working only with focal dystonia in musical and performing artists, but now has had some success with Parkinson’s patients.

 All of these things should be under the same umbrella as “physical”. The insurance industry has alot more of a stake in keeping these divides than most people realize because they can justify not covering them or charging higher premiums for them as add-on coverage. The way these things are structured and coded is often for their benefit, not the benefit of patients.

Follow the thread and see where it leads. I think you will be surprised that much of what you’ve been taught in medical school doesn’t line up with the latest research.”

So far he has not responded, but maybe that gave him food for thought and the idea will grow on him once he thinks more deeply about it later. 

One very important point I forgot to make in my response to the neurology resident is that the woman watching TV was distracted and yet her facial movements continued anyway. This is definitely not consistent with a “functional” etiology, as watching TV is a very absorbing activity often causing a person to tune out all else going on in the environment. (I will add that point to the thread next chance I get).

Perhaps where doctors tend to misinterpret a patient’s symptoms as “functional”, especially in such disorders or diseases involving brain signaling/processing or in such cases in which a condition is caused by intracellular pathogens too small or evasive to be seen by most commercial imaging techniques is that one may have a disorder that involves faulty brain function yet it is not “functional” in the derogatory sense of the word, but is in fact truly neurological and can be quantified in ways other than structural.

In a study published in the medical journal Current Opinion in Neurology in August 2013, the hypothesis of authors,  Mark J. Edwards , Aikaterini Fotopoulou , and Isabel Pareés is that attentional processes in the brain are most likely disordered.

An experiment using “Functional” Distonia patients versus familial Dystonia patients yielded the following results;

1) Both groups had increased bloodflow in the right dorsolateral prefrontal cortex to an abnormal degree

2) In the “Functional” Dystonia group bloodflow in the primary motor cortex was decreased and blood flow in basal ganglia and cerebellum increased.

3) The reverse pattern was found in the genetic Dystonia patients.

The big picture suggests that both groups of Dystonia patients have abnormal prefrontal involvement, but that those patients labeled “functional” may have additional abnormalities in frontosubcortical circuitry which regulates motor attention and likely surrounding limbic areas .

The authors of the research paper also hypothesize that certain movement patterns may become ingrained by a precipitating trigger (often physical in nature) which the brain erroneously associates with certain abnormal movements. Although this processed information is converted into abnormal movement it is not “hysterical conversion disorder” nor is it purposely initiated by the patient.

The article illustrates beautifully that what is often mistaken for a psychological phenomenon is actually a disorder of brain processing, encoding, and wiring!

So patients; next time you are told by a doctor “this is all in your mind” point him/her to this research (listed in the last link I’ve provided at the bottom), or better yet, print it out and hand it to the doctor. You are not crazy, and don’t let anyone tell you that you don’t have anything physically wrong! It is time that clinical practice caught up to the most up-to-date research and throw out the old outdated concept of “Hysterical conversion /Somataform disorders”. It is no longer relevant, and only adds insult to injury preventing or delaying your getting the real and compassionate healthcare to best treat your neurological condition.

And to doctors; Remove that discounting “Psychogenic” label from your mindset (and from your vocabulary). It’s not helpful to you in rendering effective treatment and it does nothing positive for the doctor/patient relationship (which is a necessary bond to maintain if you want to be of any real service to those you treat). If you value your reputation you must extend the same courtesy to that of your patients’ reputation. Do not chart things that invariably cause other doctors (who may ultimately have a pivotal role in your patients’ best outcome) to question your patients’ credibility. These patients’ lives are hard enough without this added burden which not only causes emotional distress but can also be quite costly to the patient financially to correct. It’s important to remember that those people in any field who’ve made the biggest  strides were individuals who dared to challenge the status quo. Why be just an OK doctor, playing it safe following trails blazed for you by others when you can be a great doctor by blazing trails for those that come later! If you choose the latter your patients will thank you and you will have contributed something valuable to your specialty!

 

References used for this article;

Update on Fibromyalgia; Dr. Sean Mackey – Assistant Professor of anesthesia at the Stanford University Medical Center

Farias Technique in Neurplastic Movemenmt Therapy – Parkinson’s

Cornell Medical College – Miswiring During Human Development

Rewiring the Autistic Brain

Dr. G. Gary Demerjian –The TMJ Connection and Dental Appliances for Neurological Disorders

Dr. Brendan Stack/Dr. Jefferey Brown – Patient Case Studies-Neurological Disorders Treated With Dental Appliances

Dr. Nick Yiannios/Dr. Tom Coleman – Dental Treatment for Muscular TMD Patients

 Dr. E. Fuller Torrey and other Researchers – Biological Basis and Schizophrenia Gene Identified

Neurobiology of Functional (Psychogenic) Movement Disorders