Was Dr. Phil Doing His Job?

I’ll get right to it.

Dr.Phil.  What are the prevailing opinions regarding Dr. P? I have never watched his show, but I don’t live under a rock either.  It’s hard not to be aware of his no nonsense, shoot from the hip, straight talk.  Americans love gossip and drama, and they love reality television.  It’s like red meat and red wine.

“And tonight we will be having a titillating show in which Tom is caught redhanded! We will pair that with high drama best exemplified by Martha’s throwing her drink in his face, and her ex-best friend will see this and tweet about it causing the entire bridge club of the White Haven Bridge Society to stop drinking their gin and tonics for five minutes !”

Dr. Phil has made his name and money on the backs of people’s pain and misfortune.  They have agreed to it by appearing on his show and airing their dirty laundry in front of America.  I suspect that people feel better about their lives by partaking of the hidden miseries of the lives of others.  Dr. Phil has been more than happy to oblige them.

This latest show, however, has me asking questions, and I don’t know the answers.

Dr. Phil has interviewed actress Shelley Duvall most well-known for her roles in The Shining and Popeye.  She has been out of the spotlight for almost 20 years, and this is the first time she has been seen.  Duvall is mentally ill with what looks to be a psychotic disorder or dementia.  To be honest, she speaks like and has the affect of someone with a schizophrenia spectrum disorder.

 

Dr. Phil is under heavy fire from certain people in Hollywood for this interview and receiving press attention, too.  Is he doing this for ratings and, thusly, exploiting Duvall, or is he merely trying to help Duvall? I’m not sure.

Mental illness is no different than any other kind of illness in terms of the body experiencing disease.  There are many contributing factors.  In the case of a schizophrenia spectrum disorder, it is, like MS, a neurodegenerative disease.  The illness itself is a manifestation of a brain-based, neurological disease.

Were people all up in arms when Michael J. Fox was being interviewed, his Parkinson’s Disease symptoms on full display? What about the countless documentaries on early-onset Alzheimer’s? How many interviews have been done with people experiencing dementia? Were people protesting then claiming exploitation and cruelty? No.  What about news programs and documentaries featuring cancer patients in the throes of treatment manifesting symptoms of “chemo brain”? No one was tweeting that the directors were cruel and exploitative then.

So, what about this particular interview is pushing buttons? Duvall herself admits to needing help.  She says, “I’m sick.  I need help.”  She also answers questions that clearly reveal positive symptoms elucidating some kind of underlying psychosis.  It’s upsetting to watch.  But what if psychosis weren’t stigmatized in our society?

What if psychosis were viewed as an indicator of a disease process in the brain, and everyone knew that.  People would then see this interview and say, “Oh my.  Ms. Duvall needs a medical intervention.  I feel sad that she is ill now,” instead of reeling back in horror.  You see, I don’t think that the root of people’s outrage over this interview is related to Dr. Phil’s tendency to ride the coattails of people’s misfortune.  If everyone were authentically outraged over this, then more letters to the press would have been written sooner.  Nothing that Dr. Phil is doing is new.  He’s the same misery vampire as ever, and the American people have loved it.  His show is still on the air.  It’s in its 14th season.

I carefully submit that people are horrified by Ms. Duvall and the manifestation of her illness.  It’s shocking.  It is abnormal, and no one wants to see it.  My question is this: How is mental illness to ever be normalized as part of the human experience unless people with negative, positive, and cognitive symptoms are introduced to people who are not acquainted with them? Mental illness is so stigmatized in our world.  It is hidden and shamed.  Few people outside of the reality of it want to talk about it in meaningful ways, and, when it is discussed and put out there bluntly, those with it are pitied or referred to as undignified.  That is actually the perpetuation of stigma.

Americans are very comfortable with mockery and making that which is quotidian and quite normal profane.  Disease in America is the norm.  It has become normal, and mental illness is normal as well because it is a disease process; but most Americans distance themselves from it through objectification and mockery.  How many Halloween costumes involve mocking those with mental illness–straight jackets, references to mental illness in the costumes themselves, and movie and comic book characters who are anti-heroes due to a mental illness e.g. The Suicide Squad.  It is an hyberbolic surreality that proliferates due to distancing behaviors rooted in stigma and fear.

What Dr. Phil is doing, while distasteful, may not be a bad thing.  The only thing that I might question is Ms. Duvall’s agency, and this is where dignity and potential exploitation come into play.  When we lose our agency to a disease, our dignity becomes dependent upon our caregivers.  Was Ms. Duvall acting on her own behalf, or was someone else acting on her behalf when the agreement was made to do this interview? Was her fundamental right to privacy violated by someone else acting as her power of attorney?

At the same time, do people ask these questions of other people manifesting diseases who participate in interviews? If not, then why? Why is there a double standard? Once again, I think that it may be due to the lack of societal normalization of mental illness perpetuated by stigma.  Someone has to go first and show the world what it looks like–and not in a movie for the purpose of entertainment.  Then, someone must go second, third, fourth, etc.  The world must get comfortable with what it has always chosen to hide and avoid.

Why? 75% of Americans will, at some point, require help for mental illness of some kind.  That would probably be a smaller number if 100% of Americans were willing to support them.

Further Reading:

Exploitative or Empowering? Dr. Phil’s Interview with Shelley Duvall Sparks Controversy

Very Cool

This is definitely going on my Cool Info page.  Researchers in Tel Aviv have found a way to possibly detect schizophrenia by taking a tissue sample from the inside of the nose making early detection possible.  This is very cool.  I did not know that we had neurons in our nose.

New finding could lead to early detection of Schizophrenia

Eight Classes of Schizophrenia

“New research shows that schizophrenia isn’t a single disease but a group of eight genetically distinct disorders, each with its own set of symptoms. The finding could be a first step toward improved diagnosis and treatment for the debilitating psychiatric illness.”

Sounds very interesting, doesn’t it? If you want to know more, then read on…

Schizophrenia not a single disease but multiple genetically distinct disorders

For Your Information

Here’s another article to make your eyes bleed and your head hurt.  I post these (and archive them under ‘Cool Info’) because they prove that when the brain isn’t functioning as it should, its illness as it were is often observed in a decline in cognitive functioning, behavioral changes, and a presentation of symptoms that meet the criteria for a diagnosis straight out of the DSM.  The greater our understanding of this, the sooner we can kick the notion of stigma associated with mental illness outta here!

Childhood’s end: ADHD, autism and schizophrenia tied to stronger inhibitory interactions in adolescent prefrontal cortex

Clearing The Fog

There is a lot of confusion around schizophrenia.  I was recently reading a website clearly written by a bunch of amateurs that was attempting to explain “splitting” in the borderline personality.  They then went on to say that splitting might remind us, the reader, of schizophrenia because of the clear identity disturbance associated with splitting.  I was shocked, but I suppose I should not have been.  The authors of this website were confusing schizophrenia with Dissociative Identity Disorder (DID).  Sometimes it feels like we’re still living in the Dark Ages.

I don’t know that I’ve written a post about how schizophrenia is defined.  Many of us know that bipolar disorder is divided into two subgroups of symptoms: mania and depression.  Depression is a unipolar illness.  Schizophrenia is classified by negative, positive, and cognitive symptoms.  The negative symptoms refer to the absence or diminishment of normal function.  They are:

  • Loss of interest in everyday activities
  • Appearing to lack emotion (this refers to the flat affect that is typical of those with schizophrenia)
  • Reduced ability to plan or carry out activities
  • Neglect of personal hygiene
  • Social withdrawal
  • Loss of motivation

This sounds a lot like depression, and on its own without the positive and cognitive symptoms it probably would be.  The positive symptoms refer to an abnormal distortion of normal behaviors and functioning, and they might include:

  • Delusions. These beliefs are not based in reality and usually involve misinterpretation of perception or experience. They are the most common of schizophrenic symptoms.
  • Hallucinations. These usually involve seeing or hearing things that don’t exist, although hallucinations can be in any of the senses. Hearing voices is the most common hallucination among people with schizophrenia  (Grace hears the footsteps of the men whom she sees although she does not hear them speak to her).
  • Thought disorder. Difficulty speaking and organizing thoughts may result in stopping speech midsentence or putting together meaningless words, sometimes known as word salad (Word salad has not been uncommon with Grace.  It is an odd thing to see.  An example of Grace’s word salad: “I want to buffalo was on the couch, and the television was on but I don’t know if I’m hungry, and I can’t decide if I want to drink that.”).
  • Disorganized behavior. This may show in a number of ways, ranging from childlike silliness to unpredictable agitation (Disorganized behavior is very common in our home).

Grace has schizoaffective disorder which is on the schizophrenia spectrum.  When she is not properly medicated she experiences almost all the aforementioned positive and negative symptoms including mania from time to time.  With the right cocktail of drugs, the mania and much of these symptoms are reduced, but if the drugs are not working Grace struggles with something called a “mixed state” which is very dangerous because the rate of suicide tends to be highest during mixed states.  A mixed state in Grace happens when she experiences mania, negative, and positive symptoms all at the same time.  It is excruciating to watch.  To me, it a new kind of torment and suffering that no one should have to endure.  I believe it’s the mixed state that has caused people to confuse schizophrenia with DID due to the rapid mood cycling.

There is one more classification of symptoms associated with schizophrenia, however, that drugs really can’t treat very well–cognitive symptoms.  Cognitive symptoms include:

  • Problems with making sense of information
  • Difficulty paying attention
  • Memory problems (online source)

According to a new study in Neuron, “Cognitive symptoms of schizophrenia include problems with memory and behavioral flexibility, two processes that are essential for activities of daily living. These symptoms are resistant to current treatments.” (online source)  In other words, the working memory issues and problems dealing with daily stress that plague people with schizophrenia are inherent to the disease.  Grace’s working memory is in the 3rd percentile.  She struggles daily with basic activities of daily living simply because she can’t remember why she left one room and went into another.  She works very hard to be flexible, and this hard work increases her anxiety levels to the point that she gets stress headaches and stomach aches.

We went shopping for a pair of new shoes for her yesterday, and it was very hard.  Much harder than it was two years ago.  Decision-making requires a herculean effort on her part, and I have to work hard to be patient.  Milly needed new shoes, too, and that’s nightmarish.  She has Sensory Processing Disorder (SPD) which is one of the most common co-morbidities with autism spectrum disorders so taking Milly shopping for shoes is like taking the princess from The Princess and The Pea shopping for mattresses.  It tests my mettle.

All this is to say that schizophrenia is not DID.  It’s not depression.  It’s not bipolar disorder.  It’s a neuroprogressive disease, and many symptoms do respond to the right combination of drugs.  There are, however, symptoms that do not, and those symptoms, the cognitive symptoms, affect daily living and determine, in large part, how successful a person with schizophrenia feels about their daily life and treatment plan.  Surprisingly, I am meeting a lot of clinicians who don’t seem to know jack about the cognitive symptoms, and that’s not acceptable in my book.

So, what can be done? Grace’s case manager and I are making it up as we go.  We are getting her set up with skills training.  I don’t really know what that means yet, but I’ll let you know when I know.  I believe that there must be a comprehensive plan that can be created to support a child with early-onset schizophrenia so that they can flourish and progress WITH–not in spite of–their illness.

Resources:

Altered Brain Activity Responsible For Cognitive Symptoms of Schizophrenia

The Daily Limp

I’m not entirely sure why I write this blog.  I think I write these posts because I need a place to put “all the stuff”.  I also write these posts because I’m hopeful that it might be useful to someone else.  Maybe our daily limp with a childhood-onset schizophrenia spectrum disorder, what it looks like, trying to treat it, how it affects our family, and all the rest of it will make a difference in another person’s life.  One hopes…

Well, we saw Dr. Klerpachik on Friday, and I must say that I genuinely like him.  How can one not genuinely like a man who openly speaks of needing to watch his carb intake while glancing down at his belly? He is a truly collaborative psychiatrist, and that’s rare.  So, how is Grace doing? Poorly.

The bump in Abilify has not helped.  The bump in Lamictal has not helped either.  Her mood is still mercurial, and she is still hallucinating.  Then, I mentioned Grace’s bouts with mixed states.  “Oh, tell me about that.”  I went on to describe Grace in a mixed state.  “Well, she’s paranoid, manic, and deeply depressed all at the same time.  Frankly, it’s awful.” He grimaced.  “What do you do when she’s like that?” I sighed, “I try to get the family out of the house, and then it’s kind of like herding cats.  For a few moments she’s really elevated and wandering around the house.  In an instant, she switches.  Then she’s openly weeping and stomping.  She becomes very belligerent.  She usually tries to lock herself in a room and refuses to come out.  Then she’s paranoid, thinking someone is watching her.  The cycle lasts anywhere from three to twelve hours.  If I can get her to fall asleep, her brain will usually reset.” He got up and paced for a bit.  “Have you tried Benadryl?” I laughed, “I’m way ahead of you.  She has a paradoxical reaction to it.”  He put his hands on his hips, “Hmph.  That can happen.”  I went on to say, “You might not like this, but I give her Dramamine to try to induce sleep because of its soporific effects.”  He looked thoughtful.  “That’s not a bad idea actually.  Does it work?”  I nodded, “Sometimes.”

In the end, he gave me a PRN (pro re nata) prescription for Seroquel to be tried during psychosis (the mixed state).  It is in the same class of drugs as Abilify, but it is known to be sedating.  He’s hopeful that it might cause Grace’s brain to calm down and let her sleep, thus, resetting during these psychotic times.  We shall see…

We moved on to speaking about Grace’s social skills regression.  I am deeply troubled by her behaviors, and it pains me to see her losing her ability to know what is and is not socially appropriate.  Dr. Klerpachik explained that this sort of regression is common with schizophrenia spectrum disorders because of the cognitive impairments that go along with it.  He began with, “Because of the cognitive impairments due to the neuroprogression of the schizophrenia spectrum disorders, kids can appear to behave as if they have autism.  Not that Grace is autistic, but there is something called…” I interrupted him, “Are you going to talk about ‘theory of mind’ (ToM)?” He said, “Why, yes!”  I got a little excited here because ToM is central to what I do for a living.  This is something I could wrap my brain around. “Are you trying to say that ToM difficulties are also common to people on the schizophrenia spectrum, and I should expect Grace to struggle with this now and in the future?” He replied, “Yep.  She’s actually going to need social skills classes much like the autistic kids do, but no one is going to put her in with the ASD kids because she’s not autistic.  It’s really too bad.  There’s not enough resources for these kids because there aren’t a lot of them out there.”  Well, I can do something for her.  This is what I do, and then we’ll see what develops.  At least I don’t feel  helpless, and that’s worth a lot.

Remember how I talked about taking care of yourself? Well, I’m trying to practice what I preach so I went to my book club meeting even though I hadn’t read the book.  Yes, I’ve become one of those people.  The woman who goes to book club but doesn’t read the book.  I don’t have time to read novels right now, but I’ll get there again.  I have to say that the women in this group are all lovely individuals.  Every time I show up they inquire after Grace almost in unison, and they listen to me drone on.  They even take their time explaining the novel’s plot just for me so that I can follow the discussion.  They don’t have to do that.  In fact, it might be annoying, but they do it anyway.  I appreciate it to no end, and it’s little supportive offerings like this that go a long way into making our ‘daily limp’ more enjoyable.

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Because Gracie loves the LOLCats

Progressive Regression

Well, it’s been interesting around here to say the least.  I’ll get right to the point: Grace is not doing well.  I keep hoping that she’s just having a bad day, but she’s not.  She’s getting worse.  Her antipsychotic medication was increased, but she’s still hallucinating.  Her mood stabilizers are not working.  She’s stuck in this purgatory of the dreaded mixed state.  She’s elevated, depressed, and paranoid at the same time.  She’s unable to make decisions, and she’s belligerent.  She is losing her ability to discern what is socially appropriate so her sisters are very reluctant to bring their friends to our home now for fear Grace will do something…odd.  The decline is astounding.

Grace had yet another migraine last week, but I had to work so I dragged her along with me.  My business partner and I were out and about Grace in tow when she suddenly declared, “I see the men.  I see the men! One of them has a really big gun this time! It’s huge! It’s really big! The one with the brown bowler hat has a big hunting gun.  They’re everywhere I look.  Do you know what I mean? Those big hunting guns?” From there she wouldn’t stop.  Every few minutes she would interrupt, “They’re over there!” She looked pale with dark circles under her eyes.  My friend looked at me.  I looked at her.  She’s been with us since the beginning.  She’s been my companion at the Behavioral Health ER a few times now.  She’s known Grace for years.  She remembers Grace BEFORE.  This Grace? This isn’t the same Grace.

“She’s deteriorating.  I don’t know what’s going on.”  

“Yeah, there’s some kind of regression present.”

“She’s worse in the afternoons, and the evenings are nightmarish.”

“Some kind of ‘sundowning’ effect.  Michael talks about that with Jani.”

She’s talking about Michael Schofield, father to Jani Schofield, one of the youngest children to be diagnosed with schizophrenia.  Jani was six years-old when she was diagnosed, and she’s still not stable a few years later.  The Schofields have been through hell and back, and they have been heavily criticized for putting a young child on what is sure to be frightening cocktail of drugs.  Let me explain something before you judge Michael and Susan or even me.

Schizophrenia is not just some mental illness contracted by people like my daughter, and now little Gracie is sad or weird.  Schizophrenia destroys brain tissue.  Do you know why Grace can’t make decisions now? Because she’s lost gray matter.

According to Dr. Paul Thompson, professor of neurology at UCLA:

Mapping this timeline (of brain tissue loss) was one of the things we wanted to accomplish through our imaging studies of young people with schizophrenia. From images taken at regular intervals of literally hundreds of patients and control subjects, we created an aggregate image of the disease process — basically, time-lapse movies of what happens when and at what rate. In the movies, you see this traveling wave of tissue loss, starting with the parietal cortex and then relentlessly sweeping forward into the frontal lobe. We’ve calculated the tissue loss at over 5 percent a year, which is comparable to Alzheimer’s disease — brain cells are actually dying as a result of schizophrenia.

It appears that the amount of tissue loss depends upon the age at which you develop the illness. If it comes on in your early teens, up to 25 percent of your brain tissue can be lost over a period of about five years. That is very severe — comparable to Alzheimer’s in the degree of damage, but different in that schizophrenia does not attack every area of the brain.

If you develop schizophrenia later, with your first psychotic episode in your latter 20s, brain tissue loss appears to be no more than 1 percent a year. Because it is a much slower process, the opportunities to intervene with drugs are greater. In brain scans of people who developed schizophrenia later and have lived with the illness for a long time, we see maybe only 10 percent to 15 percent of tissue loss over all. (Visualizing Schizophrenia)

While Alzheimer’s seems to affect the entire brain, schizophrenia damages the parietal cortex, responsible for helping us process our sensory experiences, and frontal lobe, which helps us to “organize our lives, go to work, analyze information and make decisions”.  Can you imagine losing 25% of your entire brain but solely in the parietal cortex and frontal lobe? That’s what children like Jani Schofield and possibly my daughter are up against.  This might explain why Grace is gripped by crippling migraines.  Her brain tissue is dying.

She can no longer clean her room without an adult helping her.  She can’t make decisions anymore of almost any kind.  She can’t regulate herself.  The only way to stop the progression of the disease is with drugs.  Would you deprive a child of whatever future they might have with whatever intact brain tissue they might be able to keep by attacking their parents for using whatever drugs are available to stop the progression of this awful mental illness?

At the rate of the progressive regression I see in Grace, she will never leave the house.  She will never marry.  She will never go to college.  She will never be able to fulfill her dreams because she will lose her mental capacity to live a normal and fulfilling life.  Is it any wonder that 10% of schizophrenics commit suicide?

My husband and I are living in a reality that feels surreal most of the time, and we hold onto our hope.  But, I can’t tell you how devastating this reality is.  It’s hard to describe how it feels to watch your beautiful girl deteriorate day by day knowing that the brain that grew and developed in my own body 12 years ago is dying off, cell by cell, taking pieces of that child with it, little by little.  The depth of suffering that I witness in her on a daily basis which, in turn, causes my other daughters to suffer is almost more than I can tolerate sometimes.

For the record, schizophrenia and all its spectrum disorders is not autism.  It’s not a manifestation of childhood brilliance.  It’s also not a result of bad parenting.  It’s a devastating organic brain disorder that needs treatment in an attempt, however feeble, to stop the disease progression.  One can’t tell a child to just live with it and remove all treatment.  One can’t CBT it away.  No amount of cognitive behavioral therapy will ameliorate schizophrenia because schizophrenia is not a behavioral problem.  You can’t perform a functional behavioral analysis on schizophrenia anymore than you can on dementia resultant from Alzheimer’s.  Are you getting it?

Aaaanyway….

We see Dr. Klerpachik tomorrow.  I don’t know what he’ll say.  I know what I’ll say.  We need a med change because the Lamictal ain’t workin’.  Get this kid on something that will.

Resources:

Visualizing Schizophrenia (New York Times article)

The Jani Foundation founded by Michael and Susan Schofield

January First by Michael Schofield