Flexyx, LLC
106 La Casa Via Suite 110
Walnut Creek, CA, 94598
(510) 906-0422

Neuronal Regulation From the Patient's Perspective: Implications for Practitioners

Joan Piper Mader

A commentary on EEG Disentrainment Feedback (EDF) , using a rehabilitation system designed by Len Ochs, Ph.D., with the support of Harold L. Russell, Ph.D. and the AVS Group, Inc.

Reproduced and distributed with the permission of the author. This paper is a modification of the epilog of the forthcoming book Living Feels Like Nothing I've Ever Done Before; Brain Injury and Beyond, by Joan Piper Mader.

Copyright © 1993 Joan Piper Mader

The purpose of this discussion is to present my experiences with various forms of neuronal regulation techniques. I have included conventional EEG biofeedback training, audio-visual stimulation (AVS) and the newer technique electroencephalographic disentertainment feedback (EDF) in the broad category of neuronal regulation techniques. Traditional EEG biofeedback training consists of monitoring brain wave activity with the objective of either reinforcing or attenuating specific frequency ranges. Audio-visual stimulation involves employing pulsating light and sound to drive brain wave frequencies. The driving frequency is determined by the therapist independent of the patient's existing brain activity. Electroencephalographic Disentrainment Feedback also uses the stimulation of pulsating light and sound to drive brain wave frequencies. It differs, however, from AVS in that the frequency of light and sound stimulus is determined by the patient's existing dominant brain wave frequency. The stimulus frequency is then adjusted to direct the dominant frequency in an alternating up or down by a determined percentage of the dominant frequency value in an alternating "increase/decrease" manner. Although EEG, EDF, and AVS have similar changes in brain activity and possibly even brain chemistry, the rate of change is greatly accelerated with the EDF. I will not be addressing the methodology, applications, or theoretical basis of these various approaches. My objective is to recount my experience with these modalities and to suggest implications for practitioners who decide to employ them.

In the upcoming months the results of ongoing multi-institutional clinical trials which explore the mechanisms and applications of the newer techniques will be revealed. As new application guidelines, efficacy data, and equipment options become more available, more therapists will offer CNS specific training; and more patients will wish to avail themselves of this training.

As a biofeedback therapist who has been a peripheral observer of these developments and as a head injured patient who has engaged in all three training modalities, I have chosen to use my experiences to inform biofeedback practitioners and potential patients of what I believe are important issues related to the use of these powerful feedback tools.

In 1986, age 39, I suffered a cerebral aneurysm of my right middle internal carotid artery and a cerebral vascular accident. The injury resulted in left hemiplegia and hemiparesthesia, as well as, cognitive and perceptual deficits consistent with right termpral and parietal lobe damage. After I underwent surgical repair of the defect and two months of rehabilitation in a residential facility, I engaged in eighteen monthse of physical and occupational therapy as an outpatient. Dr. Harold Russell and I began working with EEG biofeedback 9 months after the rupture of my aneurysm. Over the last 7 years, Dr. Russell and I have employed EEG biofeedback, AVS, and EDF technique as the knowledge and technology became available.

All of the neuronal regulation techniques have had favorable effects on my physical and cognitive functioning. However, our most recent efforts with EDF have resulted in the most dramatic and rapid changes.

During the past twelve months of EDF treatments conducted at the average rate of one 24 minute sessions every 2.1 days, have produced three major shifts in my brain reactivity. First the average amplitude of my brain wave activity has been reduced across all frequency ranges with the greatest decrease evident in frequencies 19 Hz and higher.
Secondly, changes have occurred in all frequency ranges in regard to the total percentage with with each frequency range contributes to overall brain activity. The most noteworthy alterations include a 50% decrease in the percentage of Hi Beta and a 60% increase in the percentage of Alpha.
Lastly, pronounced changes have occurred in overall stability of my brain activity. The most marked stability has been seen, once again, in the 19 Hz or faster frequencies. In my case, the preliminary data suggest that neuronal stimulation initiates the process whereby brainwave activity undergoes a shift from poorly organized activity to less variable patterns. In addition for me it appears that an optimum relationship exists among the various frequency ranges.

Brainwave activity changes and my experiences surrounding them have occurred in varying degrees with all the CNS modalities. However, our most recent efforts with EDF have resulted in the most recent changes. EDF has the potential for dramatically accellerating cerebral reordering and, hence, has the greatest implications for practitioners and theri patients.

The shirts in my brain's electrical activity have been accompanied by equally dramatical, emotional, social, psychological, cognitive, and spiritual transformations. Changes in all these areas do not occur independently or sequentially; dramatic shifts occurred in several areas simultaneosly. Undergoing EDF required that I make very rapid adaptations to an ever changing brain environment &endash;p; an often confusing and fatiguing task. I encountered a kaleidoscope of reactions to the experience, ranging from joyful excitement to profound bewilderment, and even distress. What I am talking about is a treatment which can alter a person's full experience of reality.

CNS biofeedback is not a modality to be utilized by the timid, distracted, or disengaged therapist. Anyone offering this treatment to a patient must make a personal committment to provide comprehensive support and guidance.

I found that my brain was continuously in a state of flux; alterations in cerebral functioning set in my motion during a CNS training session did not cease at the end of a session.

Between appointments the patient may need to discuss a change that has occurred. Therapists need to be willing to offer reasonable telephone accessability to these patients between office visits. Caution and compassion are essential attributes for the CNS biofeedback practitioner.
Determining the optimum training schedule for me was important to avoid undue cerebral fatigue. Initial I underwent twice daily EDF sessions, then once daily, and currently thrice weekly. I learned that signs such as tinnitus, persistent vague nausea, extreme mental and physical fatigue, exaggerated startle reflex, photophobia, and increase mental confusion were my body's signal to suspend EDF for a few days. The "no pain, no gain" maxim does not apply in this situation.

· Practitioners must be alert to the signs of cerebral fatigue and tailor treatment schedules accordingly.

In order to reach an understanding of the far-reaching impact of brain work with patients, one will need to acquire a respect for the all pervasive nature of the brain. At various times in history, the brain has been credited as being the center of intellect and learning; the regulator of all voluntary and involuntary physical and cognitive processes; the source of emotional response, personality, and immortality; the depository for a lifetime in memory and experience, the mediator of paranormal phenomena, the origin of linguistic and artistic expression, and even the sanctuary of the soul. In fact the brain may be all of these things and much, much more.

Man's misunderstanding of this 2 1/2 pounds of goo that sloshes about in a chemical stew within our skulls has had many disastrous consequences down through the ages. In the not too distant past, the frontal lobes of individuals were casually lopped out in the belief that this would extinguish undesirable personality traits. Believing that series activity was a sign of demonic possession, unfortunate sufferers were burned as witches. While these ideas may sound ridiculous to us today, I believe that they differ only in their degree of savagery from some beliefs that are still held today. At the time of my neurosurgery, I was told that whatever level of recovery I had achieved by one year post surgery would probably be my maximum recovery. Whenever I ventured to express a more optimistic outlook, I was emphatically admonished, "brain tissue, once damaged can never be repaired or replaced." As the graph I have shown clearly demonstrate, this was not the case. Many persons less fortunate that I are simply not offered further treatment options after they pass their one year mark.

We must be careful not to judge too harshly the integrity or competency of persons making the misjudgments. Despite all our efforts, we probably know less than one percent of all there is to know about the ways of our brains. Some believe that the brain is simply not capable of understanding itself. Since it is a self ordering, ever evolving organ, it exclusively changes faster that we can gain understanding. Neuroscientist Miles Herkemham says it well when he writes:
"When you consider all the billions of cells within the human brain, with each one affected by an unknown number of transmitters, peptides, and other 'messenger substances; the amount of information quickly escalates to a figure approaching the number of particles in existence. ...To this extent, no matter how much we learn about the brain, we can never learn it all. There will always be something to astound us, to amaze us, to keep us humble, while at the same time stimulating us to greater efforts toward understanding the brain. The human brain is simply the most marvelous organ in the known universe."

In my personal experience with CNS biofeedback, the shifts in my brain's electrical activity reflected in the graphs were accompanied by equally dramatic physical, emotional, social, psychological, cognitive, and spiritual alterations. I do not believe my experiences have been unique in any way. Every patient who undergoes CNS biofeedback training will be required to make very rapid adaptations to an ever changing brain environment. He/ she may experience a kaleidoscope of reactions to the experience, ranging from joyful excitement to profound bewilderment and even distress.

In this scene, CNS biofeedback does not equate in the furthest stretch of the imagination to attaching a thermister to someone's fingertip and training him to change their whole experience of reality. There is no ubiquitous "reality ". For each of us, what we perceive as "real" is the sum of the way we take in information about our environment, interpret it, integrate it, and respond to it. This whole process takes place in our brains. Change the brain and the output is changed --reality is altered. This is not a modality to be utilized by the timid, distracted or disengaged therapist. Anyone offering this treatment to a patient must make a personal commitment to support and "stand by" every step of the way.

The brain is continuously in the sate of flux, re-ordering itself every second of the day. Therefore, the brain you wake up with in the morning is literally not the same brain you wore when you went to bed the night before. Alterations in cerebral functioning set in motion during a CNS training session do not cease at the end of the session. The patient's brain will shift, stretch, and wiggle every minute of the day and night until you see him or her again. During the time between appointments, the patient may need to discuss a change that has occurred. Therapists need to be aware and to offer reasonable telephone accessibility to these patients between office visits. Key words for any therapist venturing into CNS work are "caution" and "compassion".

I find it difficult to present the physical, cognitive, emotional, psychological, and spiritual consequences of my CNS training in a logical manner. This I attribute to the fact that these changes did not occur separately. My usual pattern has been to experience dramatic shifts in several areas simultaneously. This has, at times, been exquisitely fatiguing.

Knowing "when to say when" is key to the intelligent and judicious application of this technique. Both patient and therapist must be alert to each individual's unique "enough is enough" signals. This is one area when the "No pain, No gain maxim does not apply. The brain seems to have a native intelligence regarding the rate and progression of it's reordering. Since we have limited understanding of the process, we have limited understanding of how it should progress. It is best to let the organ set the pace for this intricate sculpting of neurons and juices. Personally, I have learned to recognize signs such as tinnitus, persistent vague nausea, extreme physical and mental fatigue, exaggerated startle reflex, photophobia, and increased mental confusion as my body's signal to put the CNS work on hold for a few days. Sometime I have been able to abort temporarily suspending treatments by recognizing fatigue signs early, attending conscientiously to my nutrition, and rest, and programming relaxation breaks into my day. At these times, my therapist also downgrades the session to a less demanding protocol for a day or so. Potential CNS patients should be informed that this will be hard work and they will probably need to make a few minor life-style changes to accommodate the treatments.

I'd like to discuss the motor changes I, as a 7 year post right-sided CVA hemiplegic, have experienced with these modalities. The earliest effect of my EEG and AVS work was a diminution of my left sided spasticity, along with a proclivity for spontaneous movement in my left arm and leg during treatment. This movement was initially of a jerking nature. A diagnostic EEG ruled out seizure activity as the cause of the movement. Over the ensuing months, the nature of the movement changed from random jerking of arm of leg, to a slow controlled stretching of more comprehensive muscle groups. Currently I experience minimal spontaneous muscle movement, whereas before it was present continuously throughout the session.

An additional dramatic reduction in my tone occurred almost immediately with the EEF. I found this rapid reduction of tone to be exhilarating. However, this event had a good news/bad news side. I discovered that, although I could move my limbs more freely, walking was actually more difficult. Unknowingly, I had been relying on my spasticity to hold myself erect. Without this prop, I found my affected muscles to be far weaker than I imagined. Without the spasticity holding my joints rigid, I found that my limbs flopped about as I lacked the strength and coordination to stabilize or control movement. In short, I found myself prone to falls and extreme muscle fatigue.
Patients need to be aware of these possible changes at the start so that they do not become alarmed by what may feel like regression in their progress or recurrence of their CNS injury. The families of more fragile individuals should be alerted to safety issues and an increased risk for injury. Patients should be advised to exercise caution and to perform daily strengthening exercises as advised by whoever directs their ongoing physical rehabilitation.

This reduction in tone was rapidly followed by enhanced abilities to isolate muscle movements, recruit additional muscle groups, and integrate muscle activity into more coordinated and efficient movement. Prior to this, I had recovered many muscle movements but had a poor understanding of how to put them all together in a meaningful way. For instance, if I were standing up and to reach out to touch an object on the table, I tried to do it all by simply straightening out my elbow. I had no conception of what adjustments in the position of my neck, shoulders, spine, hips, ankles were needed to perform this simple movement. In some manner, the CNS work allowed me to reach this integrated understanding. While the necessary communicative pathways were being established within my brains, I also learned bow to better integrate movement through a dual process of memory retrieval and mental rehearsal. I regained memories of the "feel" of certain movements. During treatment sessions I had mental images of certain movements being performed, an "imaged" rehearsal. The process is sometimes complicated by the sudden acquisition of another component of gait movement. Sometimes these additions occur so quickly that I have difficulty making the necessary adjustments and I may be thrown off balance or walk with an exaggerated awkwardness for a day or two.

My fine motor performance has also progressed markedly in the past 6 months. I can now write with my affected hand. Since I have always been strongly right handed, this is not very legible but now possible. I have also been able to resume some of the handicraft hobbies I once enjoyed, such as crocheting. On a more subtle level, I now have the sense of being a two handed person once again. I find myself automatically using both hands without having to make a conscious effort to include my left hand.

Changes in my sensory awareness have also occurred. Post injury, I was left with total anesthesia of the left side of my body. The first return of sensory awareness occurred during EEG biofeedback. This presented as a vague awareness of the existence of my left hand which was accompanied by visual imaging of the hand's appearance.

The return of my tactile perception has also been greatly accelerated with EEF treatment. Initially, my experience was once of transient episodes of extreme burning of coldness in my left hand or foot. Theses sensations occurred in the absence of any changes in skin temperature. The experience was unsettling and sometimes uncomfortable. Usually after 2 or three days of these temperature aberrations, I would begin to experience increased awareness of light touch and pressure on my left arm and leg. While my perception of skin sensation still is prone to error and some isolated areas of anesthesia remain, I continue to see gradual movement.

My awareness of muscle and joint sensations has also improved. This is another one of those good news/bad news things. I am more aware of muscle spasms and painful joints on my left side. At times I feel as if my muscles are crawling on my bones. Another strange sensation is a deep itching, as if my very bones were itching. However, the improved voluntary control I now have over muscles, joints and appendages as a result of this improved sensory awareness has been well worth the discomfort.

I have also enjoyed enhanced auditory acuity and peripheral visual acuity. Unfortunately, all of this increased sensory input to my brain has often created a sensory overload. I find I am distracted, confused and slightly disoriented at times when my sensory awareness is most keen. At these times, I experience a deterioration of my other cognitive processes also. I experience a mild reoccurrence of old right temporal lobe cognitive deficits such as a left side neglect, scanning, and sequencing difficulties. Your CNS patients may need reassurance at these times.
Improvements in my proprioception, position sense, have been marked. Although I generally know the whereabouts of all my parts, sometimes my mainframe short circuits with humorous results. Recently I experienced several hours when I felt as if I were tilting to my right side. The sensation had subsided by the next morning. However, every night for the next three nights, I fell out of bed, something I hadn't done since I was a child. Eventually things righted themselves in my brain without any further recurrence.

My overall cognitive functioning has also improved since we began the CNS therapy; some of the changes include: increased fluidity of thought, enhanced flexibility, increased attention span, and reduced distractibility. Functionally this means I can now process several different tasks, move back and forth between them quickly, and do so with less fatigue and frustration. Prior to this I could handle the tasks, if presented one at a time in a controlled environment. If I were interrupted I might have to start all over again when I resumed the task.

Next, I'd like to relate some of the psychological and emotional responses I've had to the CNS work. I find that these areas are difficult to relate, partially because I have trouble putting the experience into words but also because these experiences are unfamiliar to me. The initial, occasional, and recurring emotional response I have had to the AVS and EEF has been related to a sense of "being out of control", or rather, of "being controlled" by something external to my self. This has created feelings of anxiety, apprehension, and fear. At times I've felt trapped and had to resist running from the room. Over time, thanks to my therapist's support and reassurance, I have come to trust my brain's aversion to taking me anywhere I'm not prepared to go.

It is simply not possible to remain emotionally neutral during the sessions. EEF is an especially persuasive cathartic for any sort of emotional blockage. During the sessions, I often experience a collage of emotional responses which, on the surface, seems to erupt from nowhere and seems unrelated to anything I am currently thinking or experiencing. This occurrence does not happen every session, only at those times when I sense that I am emotionally constipated. At those times, I have felt intense sorrow, sheer terror, rage, and gleeful giddiness all within 20 minutes time. The emotions are usually fleeting, vanishing at the conclusion of the session. It is a little like aerobic exercises for the emotions. Generally, I come out of the session feeling tranquil and refreshed.

However, there have been times when an emotional response seems to linger on for hours or even days. Those instances seem to cur when the emotional response is related either to a memory I
have retrieved during the session or to some unattended grief work that has surfaced.

The implications of this emotional roller coaster are obvious. First and foremost the patient should never be left unattended. He should be given the option to take a break in the session should he becomes too uncomfortable. Of course, he must be allowed the opportunity to process the experience with the therapist.

Although I been emotionally labile during the sessions I have experienced fewer mood shifts and more appropriate control over my emotions outside of treatment. My sleep pattern had improved markedly with frequent dreams of an instructive nature. An occasional period of 2 or 3 nights of restless sleep generally precedes a major shift in my brain's electrical activity.
Another era of my experience which I have found fascinating is that of memory, both long and short term. In some manner, the CNS modalities finely tune the process of long term memory retrieval. This is another one of those good news/bad news things. I have remembered events I didn't even know I'd forgotten. However, each memory was of a part of my past which I needed to remember and it surfaced at precisely the best time for me to remember it. Of course, not all have been pleasant recollections. The ones which prove painful are revealed in stages during and between sessions; a glimmer here, a glimmer there, perhaps a related drama or two, and then, when I'm ready, the full fledged memory emerges in a form I call experientially enhanced memory. For me, experientially enhanced memories are not simply past events "remembered"; they are past events "relived". These memories always come replete with many of the properties which accompanied the original event: emotional response, physical sensations, sights, and sounds. If the emotional response to the memory is particularly intense and unsettling, I can walk around with it for several hour or even days. This lingering emotional climate seems to serve several purposes: it keeps me preoccupied with the memory, forces me to process it, resolve it, and eventually move away from the memory experience feeling more comfortable. This process had been repeated many times for me, unearthing events from as early as when I was nine months of age.
This sort of happening has caused me to feel occasionally that I am losing my grip of sanity. There are major implications here in regards to patient screening, selection, support and counseling.

My short term memory has also been affected by the CNS work. Overall, I have noticed improvement in my short term memory. This improvement seems to wax and wane depending on my level of fatigue and distraction. This inconsistency may be an important factor in evaluating patients who seek CNS treatments for short term memory disorders.

Another era I wish to mention is that of "spiritual" experiences. Many of my experiences are similar to those reported by persons engaging in various forms of deep meditation. These are the "twilight zone" happenings which are most difficult to elaborate in words. Although I have had some of these experiences since the beginning of my CNS work, they have become more frequent and accentuated with my more recent EEF exposure. I include episodes of pre-cognition, prolonged episodes of Deja Vu, communication with my deceased father, and out-of body experiences in this category, I know I take a risk in relating these experiences. But I feel it would be negligent for me not to alert other practitioners to a possible occurrence which may provoke a major spiritual crisis in your CNS therapy patient. While I have been amuses and comforted by these experiences, others might find them profoundly disturbing.

Our society is not well prepared to deal with the spiritual happenings and to those who talk about them. The therapist utilizing CNS therapies should be open and accepting towards the mystical and establish a patient/therapist relationship which conveys a sense of safety to the patient.

All of which brings me to my final area, the social implications of CNS therapy. As a patient, I sometimes feel an extreme sense of social isolation as a result of this work. While every area of myself is in a state of flux, I have difficulty communicating these experiences to others. There is simply little basis of shared experiences to others. There is simply little basis of shard experience.

This has evoked periods of my feeling disconnected from the mainstream of life and more than just a little off center. Even my dearest friends look uncomfortable and more than just a little concerned when I relate that I can actually feel my brain working. They start looking for white coat with buckles when I explain that I have learned how to move alpha activity around to various places in my brain. Although I can laugh about this much of the time, there are times when feeling like the "odd man out" is painful and depressing. It's hard to have something really fantastic happening in my life and no one outside on my therapist, who fortunately in my case also happens to be a friend, to share, and to validate the experience for one another.

The therapist who provides CNS services should also be prepared to encounter a little isolation of a professional sort. The drawbacks of CNS specific practice are: few colleagues to share ideas with, limited acceptance of the modalities by the medical community, the frustration of working with lots of unknowns, the lack of studies documenting guidelines for applications, efficacy and outcomes. All of these factors may contribute a sense of approach/ avoidance when considering the use of the CNS specific feedback modalities.
--Joan Piper Mader