Holistic Recovery from Schizophrenia

Startling news

On Friday, Chris and I met with the director of the brainwave center to go over the results of the testing. To cut to the chase there is clear evidence of a brain trauma. According to the report we received, “Frontal, temporal motor strip and parietal dysregulation are consistent with his symptoms. These areas partifcipate in the executive, fefault, and salience networks, which have been implicated with schizophrenia. The frontal lobes are involved in executive functioning, abstract thinking, expressive language, sequential planning, mood control and social skills. The tempora lobes are involved in auditory information processing, short-term memory, receptive language on the left and face recognition on the right.” It goes on.

Evidence of a brain trauma was surprising news to the director who hadn’t been looking for any as both Chris and I had assured him that he has no history of a trauma.

“Oh, I guess I forgot to mention that when I was about age 30 I used to bang my head on the wall on occasion, and also, I got hit by a car when I was 24 and landed on the side of my head though my arm cushioned the fall.”

I was both dumbfounded by the news and totally embarrassed that we had failed to report any of this in our previous interviews. I did know of the car accident, but this was the first time I learned that he had hit his head in the accident. (His father took him right away to a nearby clinic and he was pronounced okay.) As for deliberately banging his head on a wall, well, how stupid is that?

The point is there is clear evidence of a head trauma as shown by the spectral analysis and topographic mapping. Chris’s alpha, beta, and high beta powers looked very good to the director.

Recommended treatment: Direct neurofeedback x 20 sessions with left frontal and motor strip emphasis.

Does neurofeedback work?


Eric Coates wrote an interesting piece on neurofeedback on the Mad in America website, Neurofeedback is Not for Everyone: The Dangers of Neurology   His experience with it and the subsequent comments on the article taught me what to look for in  finding a qualified practitioner for Chris. Not everyone who practices neurofeedback has the right credentials, as I learned at the first center that I called where no one on the staff had the critical letters after their name. The director of that center said that he was pulling together the right staff, but it was going to take time. There is a skills gap in making neurofeedback more available to the general public.

The Coates article was the catalyst for me to dig a bit further. Why had I not realized sooner that neurofeedback could be useful for someone with a diagnosis of schizophrenia? I accept that “schizophrenia” is a term that covers a variety of symptoms, making it a rather meaningless term. What is really at stake with “schizophrenia”, what prevents the person from forming meaningful relationships, working full-time, furthering their education, paying income tax, are the negative symptoms that affect motivation, energy, and logic. Focused listening, which Chris has been doing for the past year, has been very helpful in addressing some of the negative symptoms. I believe that doing it daily has enabled Chris to successfully get off his medication and demonstrate increased logic. However, his motor tics have not abated. They are a huge impediment to his moving forward. Part of me thinks that he can control the tics, but chooses not to when he’s around me, his way of expressing dissatisfaction with the status quo. It’s the motor tics that brought us to neurofeedback. 

Neurofeedback is a type of biofeedback where sensors are placed on the scalp to pick up real-time displays of brain activity to teach self-regulation of brain function. It strikes me that outside of research facilities neurofeedback therapists are concentrating their initial efforts on the large demographic of parents of school children who want their kids to succeed in school through greater focus and concentration. Like Tomatis Centers they promise improved attentiveness and impulse control; a decrease in hyperactivity; improved academic, athletic, and artistic performance. “Reduced extraneous movement” is one area that caught my attention. There is ongoing research into the effectiveness of neurofeedback for disorders such as autism, anxiety, depression, chronic pain, etc.

The staff at the next center whose website I looked at had the right credentials and the director had been working in neurofeedback for the past thirty years. Chris prepared for the first appointment by answering a lengthy questionnaire focusing on why he was seeking neurofeedback and what else he had tried in the past to alleviate his symptoms. The two of us put our heads together to tally the many treatments he had tried and articulate why further treatment was being sought. To be clear, the therapies he has tried to date were not directed at the motor tics per se, they were part of ongoing attempt to improve his logic, get off his medications, act “normal”, advocate for himself, etc. He e-mailed the questionnaire to the center and received back an on-line cognitive assessment which took about 20 minutes to complete. 

We met with the director of the center that same day. The staff person at the Center encouraged me to accompany Chris as I would have further useful information to contribute. 

“So, tell me why are you here?” he asked. I sat on my hands and kept my mouth shut, knowing that Chris would reveal all. Chris said that he had motor tics. If there were any doubts that Chris has motor tics, he quickly dispelled them. Throughout the interview he was flopping around on the couch like a newly caught fish on the bottom of a boat. “Are these the tics you are talking about?” asked the director at one point as Chris winced and wiggled. Anxiety, motor tics, schizophrenia, OCD, Tourettes, emotional lability, whatever it is that Chris is suffering from, it was all there on display. Chris rambled quite a bit, there was no coherent time line of events and a vast chasm between how he interpreted what happened to him and how I saw it. He said that he was first hospitalized at 18, whereupon I interjected to say that it no, it was at 20. When the doctor asked him what he felt contributed to his psychotic break, Chris pinned it firmly on his alcohol intake during his first year at college, and alluded to having a drinking problem that he believes has continued unabated to today. The director then started talking about addictions and I had to raise my finger as a point of interjection to keep him from heading down the wrong path.
 
“Chris, from what I’ve seen, you have no alcohol problem, unless you consider having an occasional glass an alcohol problem. If anything, I’d say you have a guilt problem and somehow has convinced yourself that you’re a semi alcoholic. You may have had too much beer during your first year at university, but who hasn’t done that? 

This is where Chris got angry and started to throw his father and me under the bus, alluding to OUR supposed alcohol problem. But, he quickly forgot where he was going with that and calmed down a bit. Had I not intervened, the doctor would have assumed that Chris has a drinking problem, which he patently does not. 

We limped through the rest of the interview. There was no logic on display. The story coming out of his mouth was not the story coming out of mine. I was totally confused trying to keep up with where Chris was going. The two of us presented an emotionally wrought, confusing narrative. We were pathetic. I did learn one thing though. Chris told the director that he hasn’t been on medications since September, to which the director nodded approvingly. “We can get a much clearer picture of what’s going on with your brain,” he said.

“So when he was hospitalized the second time, what do you think was the reason?” the director asked me. I said that in retrospect I first believed that we were trying to push him back to college and he didn’t want to go, then I said that with the passing years and further reflection, I began to think that the supplements he was on were good but not good enough to keep him from relapse, then I said that from the vantage point of even more passing years, it’s anyone’s guess as to what was happening. The correct answer, I assume, the one the director would say, is that his brain waves are stuck in an abnormal feedback loop and he hadn’t learned how to control them.

Reconfiguring your brainwaves for optimal mental and emotional health sounds plausible to me, but is it just another therapy that makes intuitive sense but doesn’t really work well enough for most people in practice? On the other hand (and this is important, so listen up), why should Chris or I care about how it works for most people? it really only needs to work for HIM. I’ve heard people say that they overcame their afflictions (let’s assume it always related to a lack of focus) through niacin therapy, through psychotherapy, through Focused Listening (Tomatis therapy) through the power of love, through Bible reading. For example, years ago I increased my focus big time through niacin therapy, but when I recently tried Lions Mane and niacin hoping for even more, nothing happened. Perhaps the niacin therapy I did years ago set me up for life. Similarly, through listening to high frequency mostly Mozart violin concertos, I stopped a lifelong nail biting habit. That was a visible expression of any anxiety that my body and mind were dealing with, but I had no idea that Focused Listening would fix it.  

I always hope that the latest treatment tried will be the last treatment tried because it delivers on the promise. 

More to come on neurofeedback. Stay tuned.

You might also enjoying watching Dr. Daniel Amen on the most important lesson learned from 83,000 brain scans

Is neurofeedback the future of psychiatry?

It’s nice to be back to some semblance of a routine after the holidays. I had back-to-back houseguests, twelve in all if you include my husband and two younger sons who flew over from Europe. No time to even think about a blog post until now.

The guests have gone home and the glass ornaments has been put away till next year, so here’s an update of what’s been happening. Chris is seeing a psychologist for his motor tics in addition to the psychiatrist who seems to there as a placeholder only. So far, Chris has had only one appointment with him. Chris’s first and last appointment was in October. The next one is for the end of February. This is managed care, I guess. I’m not actually complaining, as the lack of attention can work in the client’s favor. The client should feel liberated enough to manage his own care. That’s my spin on it, anyway. Or, maybe his psychiatrist is busy studying neurofeedback. More about that later.

Military language seems to have made steady inroads into everyday American life over the past few years. My husband and I noted that our visits to our new family doctor are considered “encounters” according to the printed reports that we are given on leaving the clinic. “Do you think, though, if we called the office asking for an “encounter” they’d understand what we mean?” he asked rhetorically. We’ve been hearing a lot of late about government workers being “furloughed,” rather than being “sent home.” My reminder that an automatic bill payment  was going to be “drafted” from my account was mind bender. Had to read and reread it several times before realizing that my account was going to be debited. In banking terms “draft” to me means to prepare a cheque, not to take money out of the account.

Chris is enjoying his new recovery program, which is a privately funded vocational training center. The vocational part is helping people with Chris’s diagnosis gain skills needed for entry level jobs in the service industry. The staff doesn’t put a cap on their expectations as to what someone is capable of achieving with their life, but the idea is to start slow and gain confidence. Chris has been going most days and often comes home dead tired. Good. It’s about time. He seems to be getting by on very little to no medication. He’s got traction under his feet. . . .  

. . .  if it weren’t for the motor tics that continue to plague him. The next stop for us is NEUROFEEDBACK which promises great things – a cure for all kinds of issues that make concentration and focus difficult. It works on PSTD, OCD, Tourettes, bipolar, disorder, schizophrenia, depression, etc. Neurofeedback talks a good game. If we believe the promise, it is the future of psychiatry and will turn psychiatrists into neurologists. It will complement the work Chris has been doing with Focused Listening. We’ll see how far he can run with it. 

Glitches

There were several comments to my last blog post that wound up in my Feedback tab and I can’t figure out how to get them out of there. I’m being given two choices: Mark them as SPAM  or mark them as TRASH. For the life of me I can’t figure out how to mark them as VALID COMMENTS.  My apologies to those of you who took the time to comment and are wondering why they didn’t get posted.  

Dialling in on medical

Now that Chris and I have lived in Florida for a few months I’ve had a glimpse of the way the health system operates here, which, not surprisingly, caters to old folks, of which Florida has lots. Many of them are relatively affluent to truly rich, but not to be forgotten is that Medicare is available to those over 65.  Ergo, there are tons of medical facilities here.

Some old people like to talk about their medical problems, many to the point where other people’s eyes glaze over. (Not a good thing to do around the kids if you want to appear youthful.) In Florida, you can spend your whole day indulging in this pastime because of the demographics. When conversation veers this way I call it “dialling in on medical.” So, where am I going with this? Well, much as I dislike discussing my own health (but don’t mind discussing Chris’s, lol) I can see that navigating much of life here requires a certain attention to the medical.

My post today is what can happen when people move between systems. In Europe, I was on no prescription drugs (with the specialist’s blessings). Apparently, I didn’t have a big enough heart problem or else my atrial fibrillation (A-fib in US speak) was considered minor. I was advised that I could get by on a daily baby aspirin. “Now that we’ve plugged the hole in your heart you’re fine and no need to see a cardiologist was the gist of my send-off.

Today, barely three months into living in Florida, I find myself on two prescription drugs and I have a cardiologist. My A-fib (which I’ve had all my life and is as much a part of me as the freckles on my arms) set off alarm bells at the GP’s office when I went in for a check-up. “But I’m on baby aspirin to prevent strokes and heart attacks,” I protested, “and the Swiss cardiologist didn’t think my A-fib was a problem!” Baby aspirin, the doctor replied, isn’t effective enough.  This was news to me, and probably to all those people who are on baby aspirins for the same reason I am. He left the room and returned with three boxes of sample anticoagulants. “They’re very expensive,” he said, “so this’ll tide you over until you see the cardiologist,” which turned out to be the following week.

“You’ve got A-fib,” said the cardiologist after reviewing my records, “and your heart rate is too high right now.” After arguing back and forth a bit with her I wasn’t about to ignore her advice and bravely forge ahead on a baby aspirin, but I still can’t figure out why I can’t just ditch the expensive prescription anticoagulant (twice a day which means a refill twice as fast) in favor of the once a day baby aspirin and the virtue of being on one less prescription med. Well, maybe I can figure this out. Am I being too cynical?

Chris had his own encounter with the long arms of pharma. His new psychiatrist suggested to him at their first meeting back in October that he consider going on injectable Abilify. When I heard this I hit the roof. Injectable Abilify? What the hell did the doctor think he was doing by suggesting to a patient on the first visit, a person who appears “relatively normal” on very little liquid Abilify, that he up his dose and lock himself into perpetual patienthood? Chris told the doctor he would think about it. What have I been doing wrong all these years that Chris would even suggest to a doctor that he would “think about” being locked into something that he is pretty much off of? There are several reasons I can imagine why Chris said it, and only one reason I can think of why the doctor suggested it.

No escape from being on a prescription here is the conclusion one might draw.

OCD – who knew?

For the past several years, I’m guessing four years but it could be more as time is passing so quickly, Chris has been struggling with motor tics. They didn’t exactly come out of nowhere as ever since starting on antipychotics Chris has exhibited mild twitches and odd mannerisms which I describe in my book. That has led me all along to question whether what I was seeing was the effect of the drugs or the underlying condition. There are a lot of other odd things that go along with schizophrenia, and as most of you only too well know, we parents are always asking ourselves concerning the drugs if the chicken came before the egg and vice versa.

A neurologist Chris consulted twice ruled out tardive dyskinesia and any other neurological condition (although I never spoke with him and was getting my information from Chris and Dr. Stern. The consensus between Dr. Stern and the neurologist seemed to be that Chris’s motor tics were caused by anxiety and they would go away when his life normalized (?) after he had successfully transitioned to Florida. Well, he has successfully transitioned to Florida, he’s in good mental shape, and his motor tics are still there, causing some of the people at the program he is in to ask him if he has Tourette’s Syndrome.

Let me be clear. His motor difficulties wax and wane. I have seen them disappear for a few months then creep back in. Recently, Continue reading “OCD – who knew?”

NAMI’s 12 Principles of Support

One evening last week, in an effort to be more of a joiner (and for the material, naturally!)  I headed to a church for the monthly parents’ meeting of the local NAMI chapter. The turnout was impressive and as people came in and sat down there was a lot of joking and general bonhomie. Hello, I thought, these people don’t seem to fit my image of the stereotypical NAMI members as sad, depressed, and blaming. This is great. We introduced ourselves to each other as we sat in chairs forming a circle.

The circle got bigger as more people arrived. There must have been at least twenty five parents in attendance. The leader for the evening had us read aloud from handouts the 12 principles of support, guidance on how we should conduct ourselves during the meeting, how we are should view mental illness, our loved ones, and each other. We see the individual first, not the illness, we are not to judge others, we embrace humor as healthy, etc.

Before beginning, we were asked to accept these principles of support as the basis for what goes on in the meeting. I asked if we had to support every principle, which got chuckles, but no answer. I did had a problem with Principle no. 2 We recognize that mental illnesses are brain disorders. Wanting to be more of a joiner, I raised my hand along with the rest of them as a show of general support for the principles.

Each of us then had two minutes to introduce ourselves and our situation. Continue reading “NAMI’s 12 Principles of Support”

Schizophrenia: Not a laugh a minute, but salvageable

This the second guest post that I did recently for Virgil Stucker and Associates. I was given free reign to “be myself,” so I decided to run with my funny self, always a gamble as I’m not a professional humor writer and there’s a good chance that I’m not even that funny. Thanks very much to Stephanie McMahon for allowing her funny bone to be tickled and for contributing a better blog title. If this piece starts off sounding too logical, (“I’m here to make the case”) stay with me. The best humor is never logical and is almost always at someone else’s expense! There will be no puns or spoonerisms here.

When Schizophrenia Drops From The Sky, What Do You Do?
September 25, 2018

My son Chris and I have tickets to see Jerry Seinfeld this week and consequently I’ve been giving some serious thought to the lighter side of life and what makes things funny. My first reaction many, many years ago to seeing a Seinfeld episode was, ‘But this show is about nothing!’ I was used to watching sitcoms and his show broke that formulaic mode. It wasn’t what I was expecting. But once I got it (whatever “it” was), I loved it.

In 2009, Benedict Carey wrote an article the New York Times titled, How Nonsense Sharpens The Intellect.  Carey wrote about experiences that violate all logic and expectation. Kierkegaard called it “…a sensation of the absurd.” The article goes on to say that “…at best, the feeling is disorienting. At worst, it’s creepy… Now a study suggests that, paradoxically, this same sensation may prime the brain to sense patterns it would otherwise miss — in mathematical equations, in language, in the world at large.”

According to the article, “…the brain evolved to predict, and it does so by identifying patterns. When those patterns break down — as when a hiker stumbles across an easy chair sitting deep in the woods, as if dropped from the sky — the brain gropes for something, anything that makes sense.

Our minds may retreat to a familiar ritual, like checking equipment. But it may also turn its attention outward, the researchers argue, and notice, say, a pattern in animal tracks that was previously hidden. The urge to find a coherent pattern makes it more likely that the brain will find one.”

Does that chair in the forest analogy remind you of our groping to make sense out of non-sense that happens to us when schizophrenia is dropped from the sky upon us?

I’m here to make the case that by taking more of a comedian’s cynical worldview parents can make the most of the disruptive change that schizophrenia brings about. Comedians like Jerry Seinfeld identify and exploit patterns in human behavior. They seize on the absurd and run with it. They make us laugh!

The best comedy is not logical but contains threads of patterns of behavior that are familiar to most of us (fear of being different or inadequate, fear of not being understood, fear of something foreign and new, etc.) You want to make the most of this journey of change? Enjoy it, mine it for the material, become as cynically aware of human nature as comedians are, because, like most of us who find ourselves in this theater of the absurd, fear is what drives us all.

Before I get to the lighter side of madness, I’d like to share a pet peeve of mine: People who put the Serious in Serious Mental Illness.

People who are so Serious about mental illness that they want everyone else to be unhappy. “My neighbor got casseroles when she was undergoing kidney dialysis. Where were my casseroles when my son was in the hospital with a Serious Mental Illness?” I want to scream “this is not about you, sweetie!” The egocentric mother wants a full freezer, obviously, but knows she isn’t going to get it so she’ll settle for sympathy.

Another pet peeve of mine is READ MORE

 

My guest post for Virgil Stucker

In August I answered an invitation from Virgil Stucker and Associates to submit a post to their site in anticipation of September being the month dedicated to mental health advocacy and suicide prevention themes. The request was open-ended: I could write on basically whatever I wanted to write about, and if I had any particular treatments that I thought others would want to hear about, they wanted to hear about those, too. I thought that was a pretty decent invitation because it didn’t filter what was considered “acceptable” treatment from “unacceptable treatment.” Anyone reading my blog this past year knows that I’ve been pushing Focused Listening, so if you don’t want to hear any more about this treatment, you can stop here. On the other hand, if you are curious to read different perspectives on mental health recovery from parents and professionals, you can find them on the Virgil Stucker and Associates blog.

Virgil Stucker has over thirty years of leadership experience in the recovery movement  (encompassing therapeutic communities and directorships of not-for-profit organizations). Virgil Stucker and Associates empowers mental health decision making for families and individuals facing issues due to serious mental illnesses such as depression, anxiety, bipolar and personality disorders, schizophrenia and schizo-affective disorder as well as substance abuse.

Rossa Forbes reflects on where an open mind led her when she sought help for her son, who was diagnosed with schizophrenia.

August 29, 2018

Guest Post

Guest post by author, Rossa Forbes.

I wish recovery were simple and straightforward for people like my son Chris who have experienced a serious mental illness. Often parents speak about recovery in terms of getting their old son or daughter back, meaning I suppose that their child’s personality, skills, and accomplishments before the onset of psychosis were pretty darn close to being as good as these things can be.

Read more here 

 

 

What a difference a change of continent makes

Abilify (aripiprazole) is still considered an antipsychotic in Europe (or in Switzerland, at least) but by changing continents with my recent move to the US, I find that Abilify has grown in stature, no longer a drug used by a small percentage of the population, but more like a drug superhero that watches over a lot more people with its magic protective powers. The drug superhero is paid handsomely for services rendered.

We all know that several years ago pharmaceutical companies began to market Abilify as an add-on treatment for major depressive disorder, downplaying its original role as an antipsychotic. Then, $uddenly, our $uperhero $aw a chance to help more people, $o pre$to chango, our $uperhero is now primarily an antidepre$$ant.

I don’t normally read the folded up drug information that comes inside the box. This time the Aripiprazole Oral Solution information was printed on two front and back pages of letter size paper stapled to the receipt, so it was hard not to be curious about the contents.

Let’s assume that a person who is being treated for depression, but is otherwise quite functional in his or her day to day life, decides to actually read the Aripiprazolerole literature, like I just did. She will see that the first page through to the very top of page two Continue reading “What a difference a change of continent makes”