The Future of Preventive Care

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In the last post, I mentioned the DSM board’s attempt at preemptively striking against textbook psychosis. There’s a whole other world out there in the mental health field dedicated, and quite passionately might I add, to prevention psychiatry: stopping the progression of certain experiences, mainly psychosis, before they turn into something they can label as schizophrenia.

I have nothing against their passion. But I would like one of the members to explain how creating several new disorders like attenuated psychosis syndrome would do anything other than create a new label multitudes of teenagers would be diagnosed with, fed medications that aren’t researched on teenagers, and make them fear their future more than they should.

So, where do we start?

If you ask me (no one did), preventive care, if that’s what it’s to be called, includes family dynamics, relationship dynamics, and self-dynamics, not only diagnosis and medications.

Family Dynamics

This is an important but difficult portion for me to write. I find myself grappling with words that sound rehearsed and disingenuous, because I’m not quite sure what a healthy family dynamic would be. But I understand that what you are taught, what you see, what you experience as a child heavily influences what you teach, what you see, and what you experience as an adult. This includes behaviors and thought patterns that may be seen in the world of psychology as abnormal.

The family as a whole must be looked at in preventive care because it may very well be that the problem starts somewhere in the family, perhaps in the history of the family. Substance use, abuse, neglect, perfectionism, other illnesses of family members that fall on the responsibility of the child. Every moment of life becomes a little more traumatic, and the brain is our rock, it must do what it must to protect us from processing emotions we don’t fully understand. As helpful as that can be in the moment, it becomes something to wrestle with for many years in the long run.

As a child, I never spoke my insecurities, my emotions, or opinions. I didn’t feel safe physically or emotionally. I didn’t learn healthy outlets for anger, and I didn’t learn healthy outlets for sadness. I didn’t know my pain was worth mentioning, so all of it meshed together somewhere in the back of my mind, and eventually came out as panic attacks, depression, psychosis, and self-harm.

Does this mean my family is to blame? No. What it means is that the dynamics were not healthy. It means when looking at preventing further development of experiences like psychosis and depression and self harm, regardless of whether a diagnosis is the main goal, we have to look at how the family functions/functioned as a whole.

Relationship Dynamics

What’s been learned in childhood and adolescence inevitably bridges into the relationships we have throughout life, and if there is a pattern of bumpy relationships–friendships, romantic relationships, acquaintanceship– then it’s time to also take a look at why. Everyone, even the most introverted person, needs a close friend once in a while. The inability to have an open, comfortable, a mutual connection with another person may force a person inward.

It may also signify an inability to understand what healthy relationships look like, another one of my own personal weak points. Part of preventive care should be focused heavily on providing a person resources on how to learn to have these healthy relationships, even if it’s just one person. And I’m not talking about just therapy, I’m talking about workshops and intensive analysis. Having someone in your corner makes all the difference when you feel lost or disregarded or confused.

Self-Dynamics

How does the person regard themselves? How does the person treat themselves? This is the most important aspect of preventive care, because in the end you really only have yourself as your largest support force; if you’re not on your side, who is? This is why I believe adding another diagnostic label telling someone they’re developing a life-long “illness” that they will need long-term medication as treatment doesn’t really empower them to look at their life with healthy vision.

Is the person stuck inward? Do they value themselves? Do they value others? Do they have painful outbursts? I point out these behaviors for a reason: they are most often questions asked and behaviors people want to change. I don’t believe preventive care should be about changing anyone, but rather giving the person a chance to see a different perspective and a different side of things. The personal transformation which transpires from that will help the person loosen up in the way they are meant to loosen up, rather than forcing a way of being on them. We’ve seen that force isn’t a healthy dynamic between “patient/client” and doctor many times.

Where Does This Leave Us?

If you are a provider, take into account everything. I’m sure that’s something that’s taught over and over again, in fact I know it is because I’ve heard it in every psychology class I’ve ever taken. But sometimes we forget. And sometimes we don’t mean to forget. Sometimes we get wrapped up in what our job is versus what our job could be. And that’s when it’s important to take a step back and really engage with people, understanding them on a personal level. It’s a two way street here: while it’s up to us consumers to take our health into our own hands, it’s also up to providers to guide us appropriately when we might not be able to take our health into our own hands.

There’s a notable difference between doctor’s who are genuinely curious about what’s ailing you and those who want to help, but come equipped only with the DSM.

Soteria, Peer Respites, and The Future.

In honor of 7/10: a special piece on a particular psychiatrist who helped catalyst alternative thinking within the psychiatric system. July 10th was the 13th anniversary of his death. He was also one of many sporadic voices focusing a harsh light on the cracks in the dam of the system, particular the APA of which he was a board member for 35 years. In his resignation letter on December 4, 1998, he stated clearly the truth:

“Unfortunately, the APA reflects, and reinforces, in word and deed, our drug dependent society. . . at this point in history, in my view, psychiatry has been almost completely bought out by the drug companies. The APA could not continue without the pharmaceutical company support . . .”

He had a few choice words about the organization NAMI.

“In addition, the APA has entered into an unholy alliance with NAMI (I don’t remember the members being asked if they supported such an organization) such that the two organizations have adopted similar public belief systems about the nature of madness. . . NAMI, with tacit APA approval, has set out a pro-neuroleptic drug and easy commitment-institutionalization agenda to move forward. . .”

And of course, his words on the DSM:

“And finally, why does the APA pretend to know more than it does? DSM IV is the fabrication upon which psychiatry seeks acceptance by medicine in general. Insiders know it is more a political than scientific document . . .”

We’re talking, of course, about Loren R. Mosher, M.D. If you’d like to read his letter of resignation, you can click here. It’s fairly short, but highly powerful. He speaks on the fact that there is no damning or solid evidence to support that any “mental illness”, particularly schizophrenia, is a “brain disease”–which still holds true to this day. The studies conducted on the flow of neurotransmitters during “active” phases have two invalidating, but obvious, issues:

  1. In early experiments, people were on neuroleptics. That obviously effects neurotransmitters. Invalid.
  2. We have nothing to compare this to: the so-called “decreased white matter” or “increased dopamine” could be a result of so many things, including years of antipsychotics, and without tracing this person and their exact brain chemistry since fetal development and birth, without having a clear image of their brain chemistry before the onset of their experiences, there’s no possible way you can conclude, and be valid in your conclusion, that those two observations are the result of a “disease”. INVALID. INVALID. INVALID. 

Mosher felt the acceptance of schizophrenia as a “disease” was essentially just a function of “fashion, politics, and money”.

Don’t feel invalidated by that, because he’s not invalidating individual experiences here, he’s invalidating the economic leverage organizations like the APA or NAMI or Big Pharma receive from promoting this idea of “brain disease”, by publishing weak data the public would never notice if they didn’t take five psychology research courses in college. How many of us with mental health issues have taken five psychology research course in college, including behavioral statistics? How many of us, when we read a research paper, really know what we’re reading? 

Many of us never read the actual paper, we only read what’s been reiterated in other articles. That’s like playing that game “telephone” when you were a kid: whispering different phrases in each other’s ear and when the last person says what they heard, it’s never what the first person said. That’s exactly what this is like.

Mosher didn’t just run around spewing “psychiatry is a lie! You’re being dooped!” with a sign on his chest saying “THE END IS NEAR” and a tin foil hat. He was born in Monterey  California, obtained his first degree from Stanford and his medical degree from Harvard where he received his psychiatric training. To me, that means nothing. What he went and did with it, I respect.

He visited Kingsley Hall in England (more on THAT in a different article), learned what he could, skeptical of the level of support, returned to the U.S and became the first chief of the NIMH Centre for Schizophrenia studies. Within those years, inspired by many past theories, philosophies, and attempts, Soteria Project started.

This wasn’t your average experiment. This wasn’t 30 days with a few questions, a sugar pill, and a checkmark by your name. This was a lengthy study, and the community stayed open from 1971-1983, with a two year follow up, and not-so shocking results–depending on who is reading the research.

Here’s a quick overview of the project.

Requirements:

In order to be apart of this experiment, one needed to meet certain requirements:

  1. A diagnosis, by 3 individual clinicians, of schizophrenia (based on the DSM 2).
  2. Deemed in need of hospitalization.
  3. At least 4 of 7 Bleulerian diagnostic symptoms (explained below) by 2 independent clinicians.
  4. Not more than ONE hospitalization for 30 days or less.
  5. Ages 18-30
  6. Marital Status: Single

Bleulerian symptoms: “autism”, in this way meaning a withdrawal from reality into fantasy, and affect (flattened, inappropriate), associations (loose ones), and ambivalence (mixed/contradictory feelings). Hallucinations–mostly voices, thought broadcasting, somatic mix-ups (believing someone else is imposing something on your body), delusions–all those kinds of fun things.

The purpose of the age and the hospitalization requirement wasn’t to exclude old people, it was so the project could hold some validity: the individuals taking part needed to have never been drowned in the system, or muddied up with medication. For comparison, Soteria was running up against traditional hospital treatments: confinement, involuntary medication, involuntary isolation, and stigma.

The Experiment:

Mosher describes Soteria as follows:

 “. . . a 24 hour a day application of interpersonal phenomenologic interventions by a nonprofessional staff, usually without neuroleptic drug treatment, in the context of a small, homelike, quiet, supportive, protective, and tolerant social environment. The core practice of interpersonal phenomenology focuses on the development of a non-intrusive, noncontrolling, but actively empathetic relationship with the psychotic person without having to do anything explicitly theraputic or controlling.”

The key word here, being empathetic. Not sympathetic. Not pity.

Well, there are several key words. Nonintrusive. Noncontrolling. Homelike. Supportive. Not things you usually associate with a mental health facility.

In his words, he describes the role of these “nonprofessionals” as someone who is “standing by attentively”, or “being with [the person]”, or “stepping into the other person’s shoes”. If anything, the point of the staff was to “develop a shared experience of the meaningfulness the client’s individual social context, current and historical”.

They took a bunch of psychology graduates in their mid twenties, and stuck them in an environment with people aged 18-30 who were actively “psychotic”. That’s the bottom line. There was no medication intervention. A psychiatrist stood by as peripheral, but he never was involved in treatment or decisions. He was kind of like a mannequin with eyes that blinked–that’s about as useful as he needed to be.

For many individuals, it took 4-6 weeks for their lucidity to break through and they were able to have conversations about where they wished to go next, what they wished to do, and built a plan around that with staff.

“Subjects” stayed for 5 months. The control subjects who were in for hospital admission stayed 1 month. Regardless of that difference, the cost for “treatment” was the same for both: around 4,000 dollars each.

Results:

The first six weeks there was marked improvement in communication, focus, and wellbeing, regardless of the lack of neuroleptics. After the two year follow up, only 3% of those from Soteria were maintained on medication. Compared to the control levels from the hospital, those at Soteria during the years 1971-1976 two years postadmission had higher level jobs, lived independently or with peers, and had fewer re-admissions.

There were two other Soteria-like programs built: Emanon and Crossing Roads. Crossing roads included clinical staff, medication, and a shorter more “motivation” focused stay: helping people prepare for life in society. You can read the compare and contrast in that straight from the source, linked below.

In order for programs like this to work as well as they did in his study, Mosher developed some guidelines:

  1. The setting needs to interact with the community and be indistinguishable from the community (I.e, a house on a block in a neighborhood).
  2. A small space, fitting about 6-10 people and admission must be informal and thoughtful of the person’s mental state.
  3. The staff isn’t there to bombard or control. They must be willing to understand “immediate circumstances and relevant background that precipitated the crisis”. This is what fosters the relationship and connection that allows staff to step into the other person’s shoes and support them in preparing for the social world.
  4. The relationship has the staff in multiple roles: companion, advocate, case worker, and therapist–without the therapy part. They make on the spot decisions, but include the “client” in the decision. The staff use this as a way to gain leverage in their field when they pursue higher mental health related degrees, and often have an interest in working with those in psychotic crisis. They are usually “psychologically tough, tolerant, and flexible” from lower middle class families with a “problem” member. MD’s are not in charge of the program.
  5. Staff prevent dependency and encourage “clients” to remain in contact with support networks. Clients may report feeling in control of themselves, and full with a sense of security.
  6. Access and departure is easy. Other than readmission, the clients have other means of staying in contact with the program: drop in visits, advice, or support over the phone. All clients are welcomed back once a week for an organized activity.

As a result, those who participated in this program remained socially involved, aware of the support THEY needed, rather than the support being shoved down their throat. They were given a sense of community, developed a sense of self, and that’s when the programs were shut down due to lack of funding.

Insurance companies and HMO’s refused to pay for something cheaper than hospitalizations, that promoted well-being and self-sufficiency without medication. Not to mention backed by extensive research, of which most hospital procedures and models do not have. They never will.

Conclusion:

What Mosher created was a Respite.

What we’ve further developed, upon the same principals with much amendment, are Peer Respites. However few and scattered they are, they exist, still with no big funding from major corporations or companies, nothing that would secure their existence as hospital’s have.

Rather than staff who have graduated with psychology degrees, Peer Respites are staffed with Peers: people who have swam in the deep pool of depression or swung high in the throws of Mania or slapped on that infamous tin foil hat to keep out the aliens. Whatever. I’ve never put Tin foil on my head, but I have wrapped myself in clear packaging tape to keep demons from scratching my skin. Close enough, right?

It didn’t work, by the way. I’m assuming the tin foil doesn’t keep out the aliens either, so I won’t try it. If aliens want my brainwaves, they can have them as long as they make me really good at math and whisper answers to me during tests.

Mini-Tangent over. I’ve forgotten what we were talking about.

Peer Respites. Not staffed by graduates, still not headed by MD’s, and still a community of quiet, supportive, community-based experiences. I have no clue how other’s are run, but the one I’m apart of has groups, outings (beach, hiking, whatever), trainings (for us), and a WarmLine: a phone number to call when you’re in need of support. It’s all very Soteria-esque, and also very modern. It gives those of us who are fortunate enough to “work” there a purpose, and a chance to be involved. Sometimes that means no more reliability upon disability checks. That’s huge.

Independence is encouraged: cook your own meals, wash your dishes, do what you need to during the day, call if you’re out late. We do meals together as well, everyone chips in–as much as some can–and no one is chastised if they can’t. Encouraged maybe, but never chastised. Humanity is a thing here, you see. A pretty big thing.

The wording as changed. For us, no one is a client: we have guests. We’re a house on a street in a neighborhood. We’re voluntary and self-referred. There’s no diagnosis, we don’t hand out medication, and we don’t judge if you’re on it or not.

The idea that humanity, kindness, and understanding is enough to support even the most “psychotic” person isn’t a new idea, you see. It’s just not one supported by the APA or Big Pharma. Most clinicians I’ve spoken with have never heard of such a thing, so it’s not spoken about in training, courses, or conferences unless those trainings, courses, and conferences are solely focused on Peer Support. Once again, not supported by the APA or Big Pharma. Can you think of any reasons why? I can think of a few dozen.

Were something specifically like Soteria to come back, it would be a game changer. To remove this idea that because you’re struggling, you need to be confined for your own safety and the safety of others only perpetuates this idea we’re violent, out of control, and unable to function in society. Not only does it send that message to the public, but it sends it to ourselves as well. And when we believe it, it comes true.

To direct people in crisis away from the system before they ever really become in contact with it, staffed and run by peers–that’s a dream in the making. That’s a recreation of Soteria. That’s a hybrid of Peer Respite. That would take a lot of funding. That’s been a goal of mine since I was 15. It’s been a passion since I learned Peer Respites still exist, and that the idea didn’t die with Soteria’s funding crisis.

It’s amazing what a little compassion can transform.

Links & Sources:

Soteria Review/explanation By Mosher

Bleurian Terminology and what schizophrenia was classified by

Mosher

Resignation letter (in case you missed it)

R.D Laing (Kingsley Hall)

A push against Psychiatry

The Peer Movement

Bro, Stop Moving My Arm! Stop It! Weirdo

Today I thought I’d take a different twist on things and talk about an amazing TED talk video I watched on electrophysiology and the ways our technology these days can manipulate neurosignals. This entertained me greatly.

All I could think about was buying myself one of these gadgets. Think if we enhanced it with all the crazy quantum teleportation technology we’ve developed just this last year. I’d go running around slapping random people with electrodes and then come home and sit in the closet with the lights off hooking them up to my legs and my arms and laugh knowing when I extended my arm someone was slapping their boyfriend or when I kicked my leg someone was kicking the knee of a guy standing in front of them in line. Just how diabolical could we get with this freaky science?

The day we transport thoughts via quantum entanglement is the day I’m building my underground barricade made of aluminum foil. Reynolds Wrap will see a huge increase in sales from me personally.

My Future Children’s School Attire

You can’t call someone deluded when the threat is real.

Which begs an interesting question. A lot of paranoid delusions today revolve around satellites and the government tracking your every move, your every thought. When that becomes a well-known and accessible truth, do we still call these people deluded? Or will the delusions themselves manifest differently? It would interesting to see how much of the environment really plays a part in the development of paranoid/delusional disorders and thinking. Just a thought.

Anyway, the guy in that TED talk started this website and I’ve checked it out, it’s awesome!  The human-to-human interface,  the machine he used in this TED talk (although probably not equipped with quantum physics as of YET; let me finish taking my physics classes and I’ll get started right away) is $260. I’m thinking of buying one. They have tons of little other gadgets and work with students, teachers, whoever, to get kids and schools interested in such an understudied field like neuroscience. How else are we going to improve on the disgraces we call psychotropic medication? If no one’s studying it, well you’re going to be stuck taking a cocktail of pills that will eventually ruin your heart, your liver, kidneys, and other such vital organs. We need researchers. And I think handing a kid a machine where they can control their friends arm with their brain can go one of two ways:

  1. Turn them into a raging mad scientist who deconstructs the machines and rebuilds a new one and incorporates quantum properties and ends up controlling the presidents, kings, and prime ministers of the world and makes them hit that big red nuclear war button on accident when he really meant to make them pick up that hot cup of coffee and spill it on the vice president as a joke and then destroys all of humanity except the cockroaches.
  2. Or motivates them into a future career in neuroscience and understanding the brain.

I mean, life is really all a big 50/50 isn’t it? You might wake up, you might not; you might have kids, you might not; you might laugh at that corny joke your professor tells, you might not; You might like the new Imagine Dragons album, you might not.

Completo: The Table Top Electrophysiology device. Fit for High School students or Graduate students!

I’m going to check out their Completo and find myself some Earthworms and probe the fuck out of them and measure the fuck out of their sensory neurons. I’m drooling just thinking about it. I will never sleep again if I start purchasing their equipment. Don’t feel sad for the Earthworms, they gave their life to science. Which do you think they prefer: to be used for amateur neurological research or to be eaten by some asshole fish? I mean, really, pick and choose here people, I’m making his demise worth something.

Anyway, I’d recommend checking out these guys if you’re at all interested in the brain or current research going on. More power to them; I think they’re doing a great job making this type of equipment available to anyone.

Kids learn way better when they see science in action rather than sitting in a chair and learning “This is a muscle. This is a bone. This is a brain. This is a cell. Now go home”. We need more little aspiring neuroscientists in this world.