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 |
Fare thee well
I said goodbye to Jennifer a couple of weeks ago after making two quick trips out to see her in the space of a few days. On the first trip, I brought her a pretty floral dress picked up on sale that I thought would look good on her. She was delighted and said she would wear it to church that weekend.
To put an optimistic spin on whether she will do the Focused Listening program that I have been encouraging her to do, the answer is she has NOT been doing it, and my hope is that she will turn to it in future when she’s in a state of mind that will allow her to take more control of her health. To underscore this message, I typed out a letter for her that I slipped into the dress bag. I said that the only real gift I could give her was the music program.
On my final visit, I brought along a mutual friend who is keen on checking in with Jennifer from time to time. I’ve instructed my friend in the basics of the music therapy and she’s in charge of some money donated by our Club’s Board members that is earmarked for further equipment if there is a need.
Jennifer asked us if on our way home, we could to take her back to her old flat (15 kilometres away!) so she could get in her daily 3-hour walk back to the hospital. It was a blazing hot day. She doesn’t use sunblock. I noticed that Jennifer was back to wearing flimsy slippers, not the sturdy walking shoes she’d gladly accepted from me on a previous visit for exactly that purpose. I wince when I think of her walking all that way in the heat in those shoes. I’ve dealt with the same lack of follow through or understanding of protecting one’s health and comfort with Chris.
The difference between her and Chris? Chris lives with his parents and I’m constantly in his face about wearing sunblock, wearing the right shoes, and doing some useful exercises to improve his mental health. Jennifer’s care has been entrusted to the state. I’ll never figure out why so many parents spend so much of their energy trying to get the state to parent their grown children. I can well understand the impulse, but when you see that the state is an imperfect parent, and always will be, wouldn’t it make more sense to hunker down with your relative for far longer than you would care to parent, and focus, at the very least, on protecting one’s physical health?
Fare thee well, Jennifer. I hope that in time you will figure out what you need to get to a better place.
A “bad” situation isn’t always bad
Jennifer’s situation isn’t all bad, but I can’t tell her this if I’m hoping to gain her trust. She wants me on HER side and I’m afraid she’ll shut down if I tell her what I would do if I were her. Now that I think of it, I can be a little more forthright when she complains about the Haldol. I can agree with her that it’s an outdated med and the trembling it produces is unacceptable, but I can also slip in that the newer antipsychotics are terrible for weight gain, and I’ve heard they are harder to withdraw from. I don’t want to “tell” her she’s wrong about the Haldol, because she isn’t, but, at the same time, I want to encourage her to adopt a more “radical acceptance” attitude. She’s been involuntarily committed. Her attitude in future may keep her well and out of the hospital.
Maybe if she also changed her attitude about her state appointed guardian, she’d might get some doors to open. According to Jennifer, he’s an idiot out to get her, nothing he says can be trusted. Why should she play ball with him? etc. It’s obvious to ME that he holds the get out of jail free card, but this doesn’t seem obvious to Jennifer in her present state. I believe, and I may be wrong, that, in the past, by rebuffing all attempts by the state to encourage her to take sheltered training, the guardian decided she was a lost cause. She is no longer entitled to training. That’s my understanding of the situation, anyway.
My years of experience dealing with my own son tell me that Focused Listening may be her best chance to get off the drugs for good and become rational enough to hold down a job. I’m not sure how much, if at all, she’s doing what I feel she should be doing to achieve what she tells me she wants to achieve. (I’ll accept that the last sentence is a bit of a mind bender.) The only strategy I can think of to get her to do the Focused Listening is to be on her side. It’s a complicated dance we’re doing.
How a little known listening program heals a range of “incurable” ills: Interview with Laurna Tallman
In her book Listening for the Light and in her extensive writings on the importance of music therapy for the ear and brain, Laurna Tallman has not only focused her considerable insights on the healing of dyslexic syndrome, schizophrenia, bipolarity, chronic fatigue syndrome, and substance abuse, but also on the socio-economic context where many find themselves unable to access the therapies that may truly help them. What little I had absorbed about the Tomatis therapy (the starting point of her work), even after undergoing the therapy myself and devoting a chapter of my own book to it, was unclear and confusing. I had no idea why Tomatis therapy might be key in treating my son’s schizophrenia. Laurna’s book changed that. The Tallman Paradigm is a theoretical, neurological framework for behavior that builds on and extends the work of Alfred A. Tomatis, with an important contribution from Vilayanur S. Ramachandran.
Simply put, the Tallman Paradigm maintains that altering the right ear with music has a global effect on brain function by making the left-brain dominate in cerebral integrative processes. The stapedius muscle in the right middle ear controls the amount of sound energy that reaches the left brain. If that muscle is weak or damaged, the left-brain cannot maintain its dominance over the right-brain. In people with a very weak ear muscle, the hemispheres trade “dominance” every two minutes. That condition of non-dominance, she asserts, characterizes schizophrenia, autism, and the state of normal sleep. The illnesses can be healed by using high frequency music, which Tomatis appreciated for its power, and headphones modified by blocking the left earpiece to force right-ear listening. A very important added bonus for anyone wanting to do the Tallman therapy is that anyone can do the therapy. You don’t need to travel to an expensive Tomatis center to benefit. People of any income level, no matter where they live, can heal themselves cheaply. The only equipment needed is ordinary headphones, a few CDs of Mozart violin concertos or other classical violin music, and a CD player such as a walkman or a computer. Laurna‘s website is another instance of Internet distance learning that people can apply in their own homes. She has several publications for people wanting to dig deeper into her discoveries.
Interview with Laurna Tallman, author of Listening for the Light
RF: I devote one of the chapters of my book, The Scenic Route, to the Tomatis Method therapy, which my son first underwent for a total of 60 hours in 2009. In 2009, the therapy produced interesting small changes in Chris. Not being particularly enlightened as to why he should continue the therapy once he had completed the 60 hours, I thought once was enough. What I took away from my meetings with the director of the program was that Chris would just “blossom” in some undefined way over time. When I finished my book in the late summer of 2017, Chris and I had some free time to revisit some of the therapies that (a) were covered by our insurance and (b) had a somewhat documented body of knowledge behind them, which is the case for Tomatis therapy. Both of us did the therapy this time, for 40 hours each. I felt energetically rejuvenated, but came away none-the-wiser about what this therapy can do for people or why Chris and I should stick with it.
Laurna, I suspect that my impressions of Tomatis therapy are shared by others. Tomatis therapy is expensive. Tomatis clinics usually are restricted to large population centers and the treatment is not covered by a lot of insurance plans. Can you expand on any other of its drawbacks when it comes to schizophrenia and the other conditions and why you advocate using Focused Listening?
LT: Yes, I can. But, first, I want to express my appreciation for the genius of Tomatis that led to important discoveries and my gratitude for the kindness of practitioners who use that method to reach out to people in need. Four members of our family experienced some version of the Tomatis Method and each made astonishing recoveries from dyslexic syndrome or from chronic fatigue syndrome. Those healings were not permanent, however, which set me on my own road to discovery. I would learn that treatments affecting the ear cannot be guaranteed to be permanent because the ear is easily harmed, for example, by loud noise, by infections, and by other means. Continue reading “How a little known listening program heals a range of “incurable” ills: Interview with Laurna Tallman”
Convincing people who are convinced they don’t need help
I popped in to see Jennifer last week to see how she was doing and to find out if she had started the Focused Listening program (which she hadn’t). She seemed in need an outing so we got in my car and went for a coffee at a hotel by the lake. No sign-out procedures at the hospital. I doubt anyone knew she was gone. This made me think that the staff believed that the headphones that I gave her a few weeks ago posed no suicide threat. Because of the hospital’s liberal policy of allowing patients to wander off-site I figure she has ample opportunity to kill herself and so I don’t need to go wireless for her.
Conversationally, she’s much improved. I disregarded the occasional forays into paranoia. (The bloodbath is still raging in town.) She said she’d like to work again, and that was my chance to reinforce the music therapy by saying that that my son hoped to work, too, and Focused Listening might help get them both there. Any chance I got, I put in a plug for listening to the music. She went to the washroom. I donned my headphones in her absence so when she came back she could see how much I was enjoying them.
We got back in the car and she suddenly suggested that I drive her to her old apartment so she could pick up some summer clothes and shoes. People (she didn’t say who) have been cutting holes in her shoes. She showed me where there was a hole.
When I got home after dropping her back at the hospital I wrote her a letter and posted it later that day. I wrote that the next time I came out, I’d like some reassurance that she had been doing the therapy. I would bring my headset and we could go for a walk.
A meeting with the Board
I took my proposal to help Jennifer (see previous posts) to my Board meeting last week. What I was looking for was a commitment from the members present that the Club would support her by making sure that she has what she needs to concentrate on her Focused Listening. I’ll be moving to Florida this summer and regret that I won’t be around to keep an eye on the situation.
I told the Board that I don’t know at this point whether Jennifer will want to devote two hours a day to the listening. To find that out I’ll make a couple of more visits to the hospital to see how it’s going.
Interestingly, three people on the Board have professional experience dealing with psychiatric patients: A social worker, a psychologist, and a pharmacist. The social worker was entirely in agreement with taking on the “Jennifer project” and wants to be part of the long run plan. The pharmacist had just written her boards the day before on psychiatric drugs and raised lots of ethical and liability concerns about the dispensing of care. The psychologist raised a further concern that the Focused Listening music therapy was not peer reviewed science.
What I take away from this is that professionals will always tell you why something can’t be done. Deviations from the norm can be construed as dangerous and untested.This seems especially true in psychiatric situations. The psychologist and the pharmacist no doubt felt duty bound to raise the issues, and the Board was probably prudent in wanting to limit its liability, but the reaction is an example of why I think it’s a good idea to limit one’s exposure to the medical model. Progress will be slow or non-existant if health care is left to the professionals. If there Board might have been inclined beforehand to make it official, they weren’t about to after hearing from the professionals.
The President proposed that the Club informally help Jennifer, and she encouraged any member to informally contribute keeping Jennifer supplied with visitors and focused Listening equipment. Afterwards, two Board member approached me and offered money to keep the project afloat.
All in all, a wonderful outcome to the meeting.
A visit to the hospital
I met Jennifer at the hospital last Friday afternoon, armed with my “Focused Listening” bag that included all the equipment she would need for listening to the music. But, would she go for it? Would she even be pleased to see me? I went up to the second floor of the building and knocked on her door. She was in, but wasn’t expecting me because the staff hadn’t told her I was coming, as I had called ahead to request them to do.
Jennifer, as long as I have known her, has extreme “flat affect.” At her worst, she appears cold and disinterested, but I have seen her at her “better” after her stint in the hospital four years ago, and she was kind and sympathetic.
We went downstairs to get a coffee. I noticed that Jennifer was talking, not just to me, but to the other patients. This seemed like a big improvement over the what I had observed over the past year. We sat down and I asked her what brought her to the hospital. By now, she had been there about a month.
“I was doing nothing wrong, and at 7 a.m. one morning they came to my room and arrested me,” she said.
“That was tough. Why would they do that?”
I did nothing wrong, she insisted.
“I’m sure you didn’t,” I said. “Maybe they thought you weren’t taking your medication?”
“That medication they put me on, Haldol, was awful. It is a very old medication, shouldn’t be used, and it made my hands shake.”
“Yes, I remember seeing them shake,” I said. “Haldol will do that. So, are you still on it?”
“No, I went to a doctor who said I shouldn’t be on it, and I managed to get off it.”
“So, what are you on now?”
“That’s none of your business,” Jennifer replied. If looks could kill, I’d be dead. My take-away is that she ended up in hospital because she was off her meds and had no back-up plan. Not that a back-up plan would necessarily have worked. Going off meds takes a lot of trial and error, mainly error until something sticks.
“Okay, fair enough,” I say.
She launched into a tirade about her ex-husband being raped and murdered. And so has another woman whose name she mentions and I don’t recognize. Apparently, a lot of the the people in this town have disappeared and been killed.
Listening for the Light: A New Perspective on Integration Disorder in Dyslexic Syndrome, Schizophrenia, Bipolarity, Chronic Fatigue Syndrome, and Substance Abuse
Book review of Listening for the Light: A New Perspective on Integration Disorder in Dyslexic Syndrome, Schizophrenia, Bipolarity, Chronic Fatigue Syndrome, and Substance Abuse, by Laurna Tallman
Listening for the Light author Laurna Tallman channels her considerable insights gained from understanding the tasks of the left and right hemispheres of the brain into practical advice for regaining optimal physical and mental health.
In normal brain function, both cerebral hemispheres process information, such as language. Both sides work together to maintain physical coordination and take in complex information. The left hemisphere has more control in the processing of tasks such as language and logic, while the right hemisphere has more control in processing tasks related to creativity and intuition. In cases of schizophrenia (and other mental illnesses to varying degrees), language and logic are severely interrupted (deficient) while creativity and intuition are wildly chaotic (hampered by the left hemisphere deficits). This book delves into the question of what causes the left hemisphere to lose its dominance, or, to put it another way, what causes people with mental disorders to become disorganized in the skills most needed to manage daily life (language and logic)?
The brain and the entire body are powered by sound energy entering both ears. The “normal” function of the stapedius muscle of the right ear is to quickly and directly energize the “logical” left brain with sound energy. The stapedius muscle of the left ear launches sound energy entering the left ear on a circuitous route before feeding the information to the larynx. Dr. Alfred Tomatis, an ENT doctor, scientist, and founder of the method named after him, knowing that right-ear sound is a more direct route to the larynx, determined that it is the right ear that controls the voice, concluding that the voice can only reproduce what the ear can hear. Tomatis was not talking about “tone” (the quality of a sound) he was talking about “pitch” (the frequency of the sound being produced, e.g., “C” instead of “D-flat”). And he was talking, first, about singers. (His father was an opera singer.) He thought in terms of “overall pitch” of the speaking voice in various languages. He paid no attention to what caused nuanced tone in the speaking voice. (e.g. there is little nuance in “flat” affect, a negative symptom of schizophrenia.) He had no idea what caused garbled speech, although he knew the right ear needed to be dominant to stop stuttering and to help dyslexics. And herein lies Tallman’s neurological paradigm: His ideas of ear dominance did not extend to cerebral dominance. Tallman is the one who saw that connection: that altering the right ear was having a global effect on brain function by making the left-brain dominate in integrative processes. Tomatis just thought each half of the brain ran at a different speed. Integration wasn’t on his radar.
Tallman asserts that most mental illness begins in the ear, and, specifically with a weakened stapedius muscle in the right middle ear. When the right ear stapedius muscle is either naturally weak or weakened by drugs, exposure to loud noises, etc., corrective stimulation needs to be applied. More energy needs to flow through the right ear to enable the left brain to assume its dominance in language and logic. Focused Listening strengthens the right ear to increase that sound energy flow. She makes an excellent case for why this is so. When I came across Tallman’s book, having had some experience with the Tomatis Method, suddenly I had an comprehensive, coherent, and plausible explanation for the origin of my son’s symptoms and a clear idea , thanks to this book, on how to improve on the Tomatis Method‘s shortcomings. Continue reading “Listening for the Light: A New Perspective on Integration Disorder in Dyslexic Syndrome, Schizophrenia, Bipolarity, Chronic Fatigue Syndrome, and Substance Abuse”
Latest review of The Scenic Route
A Review of Rossa Forbes’s The Scenic Route: A Way through Madness
by Laurna Tallman
Rossa Forbes writes about her son’s schizophrenia with the clarity of an investigative reporter. She describes Chris’s symptoms as she observed and learned about them, including a very interesting perspective on his childhood for anyone alert to symptoms of early ear dysfunction. She faces with ruthless honesty the psychiatric and pharmaceutical establishments in her country of origin, Canada, and in Switzerland where the family was living. If she had been treated with equal candour and willingness to learn, she would have had a better grasp of Chris’s weak self-control, fragile grip on reality, fatigue, altered learning abilities, and other personality changes, as well as with the effects of medication on his former capabilities. Instead, like so many parents and caregivers, she had to learn about those characteristics of schizophrenia and of psychoactive drugs through trial and error. Like any parent whose child has been committed to an institutional setting for his or her protection, and the protection of others, she gradually learned that the medical/psychiatric profession strategies and medications do not heal, only control. At the same time, she noticed that vague hopes and promises of improvement came with those strategies and that they were proving false.
After three years of co-operating with this misleading medicalized paradigm, Forbes decided to explore other possibilities. She conceded the need for some medication, but she withdrew her son and the family from group therapy Continue reading “Latest review of The Scenic Route”
“Jennifer” Part II: It takes a village
In my last post I wrote about Jennifer landing back in the hospital after two years of progressively deteriorating behavior. I won’t be able to visit her until later this month after my vacation. Probably just as well, as by then, she may be be better able to receive visitors.
I’d like to set her up with Laurna Tallman’s focused listening by giving her a good set of headphones, an MP3 player onto which high frequency violin music has been downloaded, some mandala colouring books for adults, and a set of simple instructions.
Assuming Jennifer agrees to my offer, it’s unlikely that she’ll be able to manage and safeguard the equipment over time and replace it when needed. Who will support her listening efforts through personal contact? (I’m in the process of moving far away and won’t be around after June to help her.) Here’s where I’m hoping to involve the members of a club that I belong to where Jennifer used to be a member. I’ll be asking the Board in May if the Club will take her on as one of their many charitable projects, to replace the equipment when needed, to make sure she’s got a reliable source of high frequency music, and to encourage her to keep listening.