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 of wine or a single beer 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
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.
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?”