Holistic Recovery from Schizophrenia

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”

Come to Jesus

I’ve been busy transitioning to Florida starting in early August. Apart from buying a new car, finding a family doctor, camping with a cooler in my own home because the fridge died, setting up new accounts everywhere, I’ve also had my first experience in the United States with buying prescription drugs (in this case Abilify) and trying to find an “open-minded” psychiatrist, meaning one who is willing to respect the current low dose of medication my son is on and to collaborate with Chris in an eventual tapering program.

I can’t say I was shocked at the price that the pharmacies here bill the insurance company because I knew that prescription drug prices in the United States are astronomically high compared to most other countries, but when you come face to face with it, that’s another story. Ouch. The first time Chris attempted to pick up his Abilify prescription, he realized that the doctor had ordered the tablet form of Abilify. $1800! I heard the pharmacy clerk whisper to her co-worker.

What? $1800 for presumably a 30 day supply that costs the equivalent of  $120.00 in Switzerland?

Once Chris clarified his need for liquid Abilify with the doctor, we went back to the pharmacy and I heard the pharmacist whisper “$500.” Well, that’s not so bad, I thought, although it seemed a bit strange that the liquid was cheaper than the tablet form.

Then I saw the bottle. The measly 30 ml supply of liquid Abilify cost $30. A 150 ml bottle costs the equivalent of $200 in Switzerland. Doing the math, 1 ml of liquid Abilify costs $16.66 in the US and $1.33 in Switzerland.

“Do you want us to put you on automatic monthly refill?” the clerk asked Chris.

“No, no, no!” I frantically signaled to him from where I was sitting, lest he cave, which he has a habit of doing. Obviously, the clerk isn’t clued into the fact that Chris doesn’t take it as it’s prescribed. That’s the same challenge he’s going to have to put to a psychiatrist. He doesn’t take it as prescribed, which is the beauty of liquid Abilify, the flexibility inherent in an easily titratrable form. We left CVS with the prescription filled and no money forked over.

The psychiatrist recommended by the family doctor isn’t taking on new patients, I found out. Now I was on my own, with no recommendation at all, so I started calling around. I was told that my best bet was at a behavioral health center. I found one near our home and phoned for an appointment. Had to leave a message on the answering machine. No one called back. I thought about just driving over and asking for an appointment, but that would be too simple, and was obviously the wrong approach to take in these matters. A human to human interaction when booking an appointment  is so passé. I was learning. I went to the company’s website, filled out a  message form involving no more than 220 characters, and hit “send”. Continue reading “Come to Jesus”

B vitamins and niacin – anecdotal cure #2

I know when I write a blog post about nutrients, I’ll have to deal with comments from advertisers feigning interest in my blog and even signing up. Why do they do this? It’s so fake.

Be that as it may, I’m still trying to figure out why B vitamins performed a minor miracle for me vis a vis anxiety that had me teetering on a state of mononucleosis, yet didn’t cure Chris of his anxiety vis a vis “schizophrenia.” I took all kinds of B vitamins in pill and yeast form and, within a week, my bloodwork was back to normal. A miracle akin to what eating grapefruit does for high blood pressure.

I’m not so convinced that B vitamins in large doses can achieve consistent results for the anxiety associated with psychosis. Perhaps what is standing in the way of better results is the support of the medical profession for B vitamin therapy for cases of psychosis.