How I Experience Thought Disorders

In this post, I continue talking about positive symptoms, in particular, thought disorders. These include things like making loose associations, trouble organizing thoughts or connecting them logically, garbled speech, something called “thought blocking” (which I will describe shortly), and making up meaningless words.

Many of these symptoms are probably noticeable by anyone who has interacted with me, but after trying to think of examples of my personal experience with them, I began to realize that while I do suffer from these symptoms, I primarily suffered from the cognitive symptom of lacking insight on certain aspects of my illness. If not that, then at the very least, I simply wasn’t aware of them until I had started researching schizophrenia more in-depth for these posts.

The first thought disorder I mentioned, which is making loose associations, is something I find myself guilty of numerous times, however, I believe I do it so often before I did any research, I had just assumed this was simply how peoples’ minds worked. While it may be true for some people, or even true for everyone in isolated incidents, I do believe it happens quite a bit with me. When I say “making loose associations”, imagine yourself playing the “word association” game with someone. As some examples, when they say, “Cow” you say “milk”. When they say “water,” you say “ocean”. When they say “sun,” you say “bright”. As a schizophrenic person, the associations may not make sense at first, or at all. Say you’re playing this word association game with a schizophrenic person and you both have a friend named Paisley. For fun, you say “Paisley” to see what the person thinks of your friend in one word. They respond with the word “Oven”. It seems pretty bizarre, but when they explain it to you, it’s because Paisley rhymes with pastry, and pastries are baked in an oven. In this case, I was the schizophrenic person and that actually happened when someone asked me what our friend’s name was. The only name I could think of was “Oven” even though I knew that wasn’t actually a person’s name.

Another thought disorder includes troubles organizing thoughts or connecting them logically; certainly another symptom I have troubles identifying in myself simply because I am so used to organizing my thoughts in such a disorganized fashion that it’s pretty much normal for me. I really tried hard to think of an example, but I can’t come up with anything. It’s sort of like asking a blind person who has been blind since birth to describe a color, it’s simply outside of their ability to perceive things. Perhaps now that I’m more aware of it, maybe I can discern my thought organization between when I’m healthy and when I’m not so healthy. I’m relatively healthy right now, however, and I hope to stay this way indefinitely. So for my sake, I hope I am never able to give you an example.

Garbled speech is another thought disorder, one which has afflicted me quite often, however, I have been fortunate enough for it not to have adversely affected very often. It happens most often when I haven’t thought of the words I want to speak ahead of time, although in more recent years I’ve found myself to put pauses in my speech to compensate for that. As a result my speech isn’t as garbled, however, I am very often interrupted mid-sentence in conversations with people who don’t know me well because they think I am done speaking. It can be pretty frustrating because, in my opinion, I sometimes have very profound things to say! An example of my garbled speech that stands out the most is when I was working at a liquor store and I had a penny-pinching customer arguing with me about the price of something. I’m always very calm when explaining prices to customers, but while I was doing this with this particular customer, my garbled speech had taken over, which resulted in him seeing it as a sign of weakness, and tried to take advantage of that by attempting to bully me into getting his 30 cents off. So in instances like that, this symptom can be pretty frustrating to deal with.

The Most Damaging Way Movies Portray People With Disabilities

As a graduate student at the University of California, San Francisco, studying medical sociology, she got involved in student activism, an experience she found deeply satisfying.

“I was an accidental activist for the mere fact that I live in a nondisabled world, and surviving in it is a full-time activist occupation,” Wong says.

Today, Wong is an outspoken disability activist. She founded the Disability Visibility Project, a storytelling partnership with StoryCorps that creates and amplifies disability media. She also co-partners on #CripTheVote, an online movement that encourages the political participation of people with disabilities. In 2013 President Barack Obama appointed Wong to serve on the National Council on Disability.

She made history in 2015 when she became the first person to attend an event at the White House via a telepresence robot. Wong is also the editor of the forthcoming anthology Resistance and Hope: Essays by Disabled People, which will be available for free Oct. 15.

HuffPost spoke to Wong, who lives in San Francisco, over email to learn more about media representation of people with disabilities.

What are some of the problems with how people with disabilities are portrayed in the media?

Sooooooo many problems, too many to name! The main issue is that very few in media have any lived experience with disability so the story is told through a nondisabled lens. The editorial gaze and audience is presumed to be nondisabled and this is why you see clickbait inspiration porn, headlines that use ableist or outdated terms, or interviews and stories that center on parents/advocates rather than actual disabled people.

The fact that conversations about diversity in media rarely include disability indicates how far we have to go until coverage of disabled people improves. It’s an issue of structure and power, essentially: Who is centered, who decides what makes a “good” story, and what are easiest and “palatable” ways to tell a story.

In movies, I’ve noticed this trope of the disabled person as the villain. What are other ways people with disabilities tend to be portrayed, and how do they make you feel?

The one trope that is the most damaging and painful to me personally is the trope of “disability is worse than death.” Unfortunately, this narrative is very common, usually with a nondisabled savior who learns a valuable lesson on living life to the fullest. Ironic, riiiight?

The most recent example is the ableist dumpster fire known as “Me Before You,” starring Sam Claflin and Emilia Clarke. Disabled people have been speaking out and protesting this film, sharing their stories about euthanasia, ableism and the lived experience of disability. Unfortunately, the director of the film, author of the novel it’s based on, and audiences in general saw the film as a romantic tearjerker rather than a film that shared some seriously disturbing messages about disability.

What the author and filmmaker do not understand is, while it is ‘one story,’ there are so few stories about us, by us, that this representation becomes normative. Disability representation is not even close to being fully authentic, diverse or nuanced. Films like “Me Before You” condition audiences’ expectations of disabled characters and stories which, in turn, form societal beliefs and assumptions that can result in real-life consequences on actual disabled people (e.g., support for assisted suicide legislation, the rationing of health care, etc.)

What led you to start the Disability Visibility Project, and what is your hope for it?

In 2014, I noticed a lot of organizations in the disability community were preparing to celebrate the 25th anniversary of the Americans with Disabilities Act in July 2015. I’ve always been bothered by the lack of disability history and stories in media. Why do we consistently have to pipe up and say, “What about us?” in stories about civil rights or social movements?

My frustration from lack of visibility led me to form a community partnership with StoryCorps so that I could encourage people with disabilities to record their oral histories with the option of archiving it at the Library of Congress. To me, this is a brilliant opportunity to have people create their own history. Four years later, the DVP has collected about 140 oral histories. I love the idea that we’re capturing disability history in the present for future generations.

The DVP was initially a one-year oral history campaign, and my goal was to record our disability history in our own words. Now, the DVP has expanded to become a vibrant online community with a Facebook group, strong Twitter presence and a podcast.

While America wages war on opioids, meth makes its comeback

I’m old enough to have seen many cyclic epidemics across the major drug classes. As the War on Drugs would destroy drug organizations, they would rise again with a different drug class, marketing model, smuggling network, and generally cheaper prices….

For Capt. Mark Wollmershauser Jr. and the Tulsa Police Department, the late-2000s and early 2010s were an extremely dangerous time.

In Oklahoma, a state that is no stranger to the scourge of methamphetamine addiction, those years were the heyday of the “shake and bake” method — a rudimentary way of making meth using just cold medicine, some toxic chemicals and an empty two-liter bottle.
The technique is simple enough that many addicts can cook their own meth, but with one tiny misstep, the chemical reaction that occurs inside can cause deadly explosions.
By 2011, Wollmershauser and his narcotics unit were finding and dismantling hundreds of these vessels in meth labs around the city.

“People were not just burning themselves while cooking meth but were causing damage to other residents that had nothing to do with methamphetamine,” he said. “It was a really horrible time.”

When new laws were enacted to limit access to pseudoephedrine — an allergy drug used in making meth — the proliferation of these mobile labs waned. After responding to a high of 431 meth labs in 2011, his department encountered just 19 last year.
But Wollmershauser said that didn’t spell the end of Tulsa’s meth problem. In fact, officials across the state say they are seizing meth that is purer, cheaper and in greater quantities than ever before, with most of it coming from south of the border.
And while much of America is focused on combating the devastating impacts of opioid addiction, some states like Oklahoma are struggling to fight a new battle against an old foe.

Richard Salter has been with the Drug Enforcement Administration for 27 years, most recently as the special agent in charge for the state of Oklahoma.
He said the meth problem in Oklahoma is getting worse, and points to Mexican cartels — in particular, the powerful Sinaloa cartel — as the reason.
As it became more difficult and dangerous to produce meth in the United States, cartels recognized an opportunity to fill the void.
“They came in with much purer, much cheaper meth and just flooded this region of the country,” Salter said.

Salter said in 2012, the DEA was buying meth undercover off the streets for $1,100 an ounce. Today, his agents are regularly getting ounces for just $250 to $450.
“That’s as cheap as I have ever seen methamphetamine my entire career,” he said.
The reason for the drop in prices is the scale of production that the Mexican cartels have achieved. Whereas “shake and bake” labs could turn out lots of small batches, so-called “superlabs” in Mexico produce hundreds of pounds daily.

Widespread Inflammation in Brains of Those with Fibromyalgia

A study by Massachusetts General Hospital (MGH) researchers – collaborating with a team at the Karolinska Institutet in Sweden – has documented for the first time widespread inflammation in the brains of patients with the poorly understood condition called fibromyalgia. Their report has been published online in the journal Brain, Behavior and Immunity.

“We don’t have good treatment options for fibromyalgia, so identifying a potential treatment target could lead to the development of innovative, more effective therapies,” says Marco Loggia, Ph.D., of the MGH-based Martinos Center for Biomedical Imaging, co-senior author of the report. “And finding objective neurochemical changes in the brains of patients with fibromyalgia should help reduce the persistent stigma that many patients face, often being told their symptoms are imaginary and there’s nothing really wrong with them.”

Characterized by symptoms including chronic widespread pain, sleep problems, fatigue, and problems with thinking and memory, fibromyalgia affects around 4 million adults in the U.S., according to the Centers for Disease Control and Prevention. Previous research from the Karolinska group led by Eva Kosek, MD, Ph.D., co-senior author of the current study, suggested a potential role for neuroinflammation in the condition – including elevated levels of inflammatory proteins in the cerebrospinal fluid – but no previous study has directly visualized neuroinflammation in fibromyalgia patients.

The results from both centers found that glial activation in several regions of the brains of fibromyalgia patients was significantly greater than it was in control participants. Compared to the MGH team’s chronic back pain study, TSPO elevations were more widespread throughout the brain, which Loggia indicates corresponds to the more complex symptom patterns of fibromyalgia. TSPO levels in a structure called the cingulate gyrus – an area associated with emotional processing where neuroinflammation has been reported in patients with chronic fatigue syndrome – corresponded with patients reported levels of fatigue. The Karolinska team’s studies with the astrocyte-binding tracer found little difference between patients and controls, suggesting that microglia were primarily responsible for the increased neuro-inflammation in fibromyalgia patients.

“The activation of glial cells we observed in our studies releases inflammatory mediators that are thought to sensitize pain pathways and contribute to symptoms such as fatigue,” says Loggia, an assistant professor of Radiology at Harvard Medical School. “The ability to join forces with our colleagues at Karolinska was fantastic because combining our data and seeing similar results at both sites gives confidence to the reliability of our results.”

Solving America’s painkiller paradox

Here’s how to fix America’s painkiller problem — without leaving pain patients behind.

his year, researchers uncovered a simple method for getting doctors to reduce profligate prescriptions of drugs like OxyContin and Percocet that have contributed to America’s opioid epidemic: informing doctors that one of their patients had died.

In their study, which was published in Science in August, researchers sent a letter, through the local medical examiner, to 388 clinicians in San Diego County, California, informing them that a patient they’d prescribed a drug to had overdosed and died. The letter, which was based on actual events, came with instructions and recommendations from the Centers for Disease Control and Prevention (CDC) on proper opioid prescribing. Another 438 clinicians who had patients die were tracked but not sent letters; they were the comparison group.

The results: Clinicians who got the letters prescribed nearly 10 percent fewer opioids than those who did not receive a letter. The letter-receiving clinicians were also less likely to start patients on opioids and less likely to give patients higher doses of opioids.

For researchers, it was a promising outcome — the discovery of a nudge that could help abate an opioid epidemic that has become the deadliest drug overdose crisis in US history.

“It’s one piece of the puzzle; it’s not the end-all solution,” Jason Doctor (yes, Dr. Doctor), the lead researcher on the study, told me. “I think we’re going to need a lot of these nudges to bring prescribing down.”

The nudge stands in contrast to the more heavy-handed policy efforts that lawmakers around the country have embraced lately to limit doctors’ opioid prescribing abilities. Congress is currently considering setting caps on how long doctors can prescribe opioids for, and several states have already passed such limits. Some states have gone even further; Oregon has considered a Medicaid policy that would force chronic pain patients off opioids.

New screening tool can improve the quality of life for epilepsy patients with sleep apnea

Rutgers researchers have developed a tool to help neurologists screen for obstructive sleep apnea in people with epilepsy whose seizures can be magnified by sleep disorders.

The study appears in the journal Neurology Clinical Practice.

Although detection and treatment of obstructive sleep apnea (OSA) can improve seizure control in some patients with epilepsy, providers have not regularly assessed patients for those risk factors. The researchers developed an electronic health record alert for neurologists to evaluate a patient’s need for a sleep study.

This study can determine the necessity for treatment, which can result in improved seizure control, reduction in antiepileptic medications and reduce the risk of sudden unexpected death in epilepsy.

OSA occurs when breathing is interrupted during sleep. The Epilepsy Foundation estimates that approximately 40 percent of people living with epilepsy have a higher prevalence of OSA that contributes to poor seizure control.

“Sleep disorders are common among people living with epilepsy and are under-diagnosed,” said lead author Martha A. Mulvey, a nurse practitioner at University Hospital’s department of neurosciences. “Sleep and epilepsy have a complex reciprocal relationship. Seizures can often be triggered by low oxygen levels that occur during OSA. Sleep deprivation and the interruption of sleep can therefore increase seizure frequency.”

The researchers developed an assessment for identifying OSA consisting of 12 recognized risk factors, which are embedded in the electronic health record. If a patient has at least two risk factors, they are referred for a sleep study. The risk factors include: body mass index greater than 30 kg/m2; snoring; choking or gasping in sleep; unexplained nighttime awakenings; morning headaches; dry mouth, sore throat or chest tightness upon awakening; undue nighttime urination; decreased memory and concentration; neck circumference greater than 17 inches; excessive daytime sleepiness; undersized or backward displacement of the jaw; and an assessment of the distance from the tongue base to the roof of the mouth.

Medicaid Expansion Making Diabetes Meds More Accessible To Poor, Study Shows

Low-income people with diabetes are better able to afford their medications and manage their disease in states that expanded Medicaid under the Affordable Care Act, a new study suggests.

The Health Affairs study, released Monday afternoon, found a roughly 40 percent increase in the number of prescriptions filled for diabetes drugs in Medicaid programs of the 30 states (including Washington, D.C.) that expanded eligibility in 2014 and 2015, compared with prior years.

By contrast, states that didn’t embrace the Medicaid expansion saw no notable increase.

“Gaining Medicaid insurance would have significantly reduced out-of-pocket spending for insulin for previously uninsured patients, thereby facilitating uptake of the medication,” the Health Affairs study said.

Diabetes, characterized by abnormally high blood sugar, is a chronic disease that requires expensive and ongoing medical care. More than 114 million adults in the U.S. have diabetes or prediabetes, making the disease one of the country’s most formidable health challenges.

Is the World Making You Sick?

Miller has spent 30 years hammering out a theory to explain the contemporary surge in perplexing, multi-symptom illnesses — from autism to Gulf War Syndrome — which represent a Kuhnian shift in medicine. She calls her theory “TILT,” short for Toxicant Induced Loss of Tolerance.

TILT posits that a surprising range of today’s most common chronic conditions are linked to daily exposure to very low doses of synthetic chemicals that have been in mass production since World War II. These include organophosphate pesticides, flame-retardants, formaldehyde, benzene, and tens of thousands of other chemicals.

TILT, says Miller, is a two-step process. Genetically susceptible individuals get sick after a toxic exposure or series of exposures. Instead of recovering, their neurological and immune systems become “tilted.” Then, they lose tolerance to a wide range of chemicals commonly found at low doses in everyday life and develop ongoing illnesses.

Along with Nicholas Ashford, professor of policy and technology at the Massachusetts Institute of Technology, Miller co-authored Chemical Exposures: Low Levels and High Stakes. In 2012, Miller and her colleagues published a study in the family practice journal Annals of Family Medicine. They reported that 20.3 percent of individuals with chronic health issues suffer from some degree of chemical intolerance. That’s one in five — and, says Miller, they become vulnerable to TILT if they endure too much toxic exposure.

Miller is currently working with scientists at Harvard to inform a new generation of studies to document TILT. Her theory has been controversial, particularly for its idea that low-dose exposures, below the accepted toxic threshold, can be disabling. Yet in conversation with Nautilus, Miller was open and friendly, never defensive, even when presented with her critics.

You state TILT is the third major theory of human illness, after the germ and immune theories. That’s a bold conjecture. What exactly do you mean by that?

The germ theory is an example of a “Kuhnian” revolution in science. Because of germ theory, we changed the way we conduct surgery, prepare and preserve foods, treat wounds, or even cover our mouths when we cough. We have a unifying explanation for a stunning variety of symptoms, all caused by different germs with different propensities.

But many illnesses remained that couldn’t be explained by germs alone. The next revolution was immune theory. We discovered antibodies, antigens, and immunoglobulin. Antigens are molecules, such as microbes or pollens, which provoke an immune response. Antibodies are the molecules your body crafts to bind to and inactivate those antigens. Once we discovered them, we gained new insight into conditions like rheumatoid arthritis or asthma.

Today, a novel class of illnesses is on the rise, and neither theory sufficiently explains it. TILT shows how a person can have a toxic exposure and never recover. Exposures trigger a bewildering array of symptoms that many people never trace back to synthetic chemicals in their daily life. They may experience cardiac and neurological abnormalities, headaches, flu-like symptoms, bladder dysfunction, asthma, depression, anxiety, pain, cognitive dysfunction, and sleep disorders.

If we are sensitive to such low doses of common chemicals, how can we ever manage to avoid them all?

Let me tell you the story of the EMU, and how it changed my life and set me on this path. EMU is short for Environmental Medical Unit, a term coined by a heretical genius, allergist Theron Randolph. He would put patients on an allergy elimination diet and have them stay in an EMU he’d constructed, a non-toxic room with highly filtered air. He invited me to sit in and observe patients with him. Over the course of days, the patients’ symptoms would melt away, and once they felt better, he’d start introducing foods or chemicals, blinded, one at a time. The responses completely shocked me. He would put copy paper in a jar and the exposure level would be so low, and it literally blew my mind that low exposures like that could cause symptoms. There would be depression, vomiting, and cognitive dysfunction. It was as if the whole picture of the disease returned. Once the patients knew what they were sensitive to, they could avoid those foods and chemicals.

Staff Vacancies Just Got A Little More Important & Complicated

You can’t go to a health and human service meeting where the topic of workforce doesn’t come up. Common topics include retention of direct service professionals, the shortage of psychiatrists, tech-enabled task shifting, and paying for productivity and performance (for more, see the presentation from last week’s 2018 OPEN MINDS Executive Leadership Retreat, How To Retain & Grow Direct Support Professionals).

Payers have discovered the importance of the right team and the right number of team members too. Case in point—in July, the Centers for Medicare & Medicaid Services (CMS) released updated Nursing Home Compare Star Ratings. And for the first time, those ratings used payroll-based journal (PBJ) staffing data to substantiate nurse staffing ratios.

The result was that 8.9% of facilities (1,387) had their star rating for direct care staffing downgraded to one star (out of a possible five). And for about half of those skilled nursing facilities, their overall star rating also dropped (see Medicare Nursing Home Star Ratings Downgraded For 8.9% Of Nursing Homes Due To Inadequate Staffing). Perhaps even more interestingly, consumers and their families can also view the average number of residents per day and the average number of hours certain staff members (i.e., physical therapists, registered nurses, and nurse’s aides) spend with consumers compared to the national and state averages.

We did write last week that consumers don’t always pay attention to quality ratings (see How Do Consumers Pick A Provider? It’s Often Not Quality). But, I would argue that ratings will grow in importance with consumers, and that payer and health plan managers do pay attention to these rankings and ratings. And as data aggregation becomes easier, I suspect that transparency in areas like staffing will become expected, and required, across the board.

While transparency in staffing and ratings incorporating staffing functions are increasing, staffing challenges for health and human service provider organizations continue to grow. These big challenges include high turnover rates, the cost of staff vacancies, the impact of addictions on personnel, and the reductions to the foreign labor pool.

Michigan PFAS by the numbers: How much is unsafe?

Industrial chemicals known as PFAS have been linked to serious health risks. But nobody agrees on how much is unsafe.

The federal government has yet to develop a nationwide standard for PFAS in drinking water, and few states have crafted regulations of their own. Those that have — including New Jersey, Vermont and Minnesota — all have different standards.

And a recent draft report from the U.S. Centers for Disease Control suggests PFAS could be risky at far lower levels that previously believed.

Confused? You’re not alone.

“It’s really no wonder that the average American is driven to wonder whether their drinking water is safe,” Lisa Daniels, director of Pennsylvania’s Bureau of State Drinking Water and president of the Association of State Drinking Water Administrators, told a U.S. House committee this month at a hearing probing PFAS concerns.

Here’s a primer on all the numbers related to PFAS –  shorthand for per- and polyfluoroalkyl substances –  and why they matter.

But first, where did PFAS come from?

Because they can reduce friction, types of PFAS have been used to manufacture everything from Teflon and Scotchgard water repellent to firefighting foam. U.S. manufacturers have largely phased out types of PFAS that are more problematic, but those chemicals are still used internationally to make products that may be imported.

How are PFAS hazardous?

Research is still evolving. The two most studied types of PFAS are called PFOA (perfluorooctanoic acid) and PFOS (perfluorooctane sulfonate).  The most consistent findings of exposed populations have linked the chemicals to low birth weights, immune system troubles, thyroid problems and cancer, according to the EPA.

How much do the feds say is too much PFAS?

The EPA has no drinking water standard for PFAS. That means the agency has no legal leverage to force a water system to address contamination. In 2016, however, the agency set a health advisory level: 70 parts per trillion for combined PFOA and PFOS over a lifetime. (Think of one part per trillion as a grain of sand in a swimming pool.)  Exposure above the health advisory threshold is seen as a health risk, but the standard is unenforceable.

In June, however, another federal agency offered different guidance.

draft report from the Agency for Toxic Substances and Disease Registry, part of the Centers for Disease Control, produced a “minimal risk level” far below the EPA threshold: 7 parts per trillion for PFOS and 11 parts per trillion for PFOA.

What do states say?