Case Study:  “Carol”

Carol came across one of our brochures for Back in Balance, our program to provide neurofeedback to returning veterans. She had read that we address brain injuries through neurofeedback and asked me, “If it works for veterans, will it work for normal people?” I explained there is nothing different about a veteran’s brain; that I do the same work with other brain injured people. The only difference is that I do not charge veterans for my services. I had to repeat myself several times in different ways for Carol to understand me.

Carol told me that she had frequent severe migraines, fibromyalgia and poor sleep. The things that seemed to bother her most, however, were her “mental degeneration” and her loss of sense of humor. She said that she had lost most of her friends by asking, “Was that supposed to be funny?” sincerely wondering whether the person was joking or serious. To have a discerning appreciation for the subtleties of humor, one must have a fully functioning frontal lobe. In Carol’s most recent accident, her frontal lobe had been slammed when a workman remodeling her home, not knowing Carol was at his side, had turned abruptly and clocked her above the left eye with a solid core door. She was knocked unconscious and over the years since that injury had lost her job, home, support group and ability to think clearly.

When Carol arrived for her first appointment, she appeared much older than her sixty years. She was physically unstable, using a cane to steady herself. Even with the cane, Carol needed to use her other hand to touch the wall beside her for guidance. Narrow spaces, such as the hallway, made her dizzy. In addition, she had to intently focus on whatever she was doing. For example, she had to stare at her hand while she was holding something because if she became distracted, she would drop whatever it was – tea, soup or money. If she closed her eyes while standing, she would lose her balance and fall over. The remodeling incident came just a little more than a year after another head injury. Carol had fallen backwards when she slipped off a curb, hitting the back of her head against concrete. It had been a long haul and had taken her a year to feel stable again.

After her more recent injury, Carol became prone to infections and spent much of her time in bed, rising only to go to the bathroom or to eat. A registered nurse, Carol could no longer work but had the training and insight to see her situation as a dreadful slippery slope to degeneration and total incompetency. In fact, her primary care provider, an MD, had started her on Aricept, the prescription drug most often used to slow the progression of Alzheimers, and had recommended Carol make arrangements for long term care.

Carol had worked with naturopathic physicians for years; in fact she made significant financial sacrifices in order to pay for insurance that allowed her to regularly see naturopaths and chiropractors and to pay for the food she considered necessary to maintain a healthy diet. Lab testing by her naturopathic physician had shown her to be both gluten and casein sensitive, but Carol said she had tried eliminating both proteins from her diet to no effect.

Gluten is a protein found in many grains such as wheat, rye and barley while casein is a protein found in most milk products. When a person’s immune system recognizes gluten or casein as a foreign substance, it leads to inflammation which, over time, harms tissue. It can also irritate the cortex of the brain.

The body’s antibody response is what is reflected in the lab test for food sensitivity so it is hard to imagine that it would not make a difference to eliminate the proteins from the diet. When there is a positive lab test and people tell me there was no change after removing casein and/or gluten, I assume they have either not totally eliminated the proteins or did not do so for a long enough period.

Gluten and casein are the building blocks of the standard American diet. They are everywhere, especially in what many people consider “comfort foods” so it is understandable that one of the most difficult things to do is completely avoid them. Unfortunately, something that is toxic to the body is also damaging the brain.

By taking an extensive personal history, we learned that prior to her most recent injury Carol had been a very hardy person. She had been a tomboy as a child and had excelled in sports. (Unfortunately, her physical activity had led to several minor head injuries throughout her life.) Based on our intake, we started challenging Carol’s brain using the Low Energy Neurofeedback System (LENS).

A brain shares some similarities with an electrical generator, but it can run at several different frequencies or speeds at the same time. Each frequency has a set of jobs. For example, slow speeds are great for sleeping and faster speeds for mental challenges. The speed that is dominant at any one moment will help determine how easily a task may be accomplished. Injured brains can become “stuck” – unable to shift gears easily, making accomplishing the tasks of a normal day very difficult. Some people with brain injuries can not sleep at all while others can’t seem to wake up. Some may have no issue with sleep but find processing information, emotions and/or sensations almost impossible. Each injured brain is different.  The energy of the brain is measured in microvoltage or millionths of a volt – a million times smaller than a volt coming from a wall socket. The brain’s energy production is much, much smaller than the output of a cell phone; even smaller than a wrist watch. It is more in the range of an FM radio signal.

The rationale of the LENS is to provide the brain with a signal slightly different, or “offset”, from the dominant signal the brain is generating. The dominant or peak frequency of the brain at any one site is constantly shifting. The offset is an electromagnetic signal introduced from the EEG equipment and down the wire. The signal is timed to dance with the dominant frequency, only separated by a few paces. This fixed distance from the dominant signal is designed to let the brain know there are options other than what it is already doing. This is done because the brain is a pattern seeking device, constantly scanning the environment for the familiar and the peculiar - it is a survival tool that is hardwired into our brains. By staying a set distance away from the dominant frequency, the offset is giving the brain information about its own behavior without running the risk of the brain repeating itself to the point of seizure. After one week, Carol returned. She had been very tired immediately following our session, but then she noticed improvements in her sleep, balance and mood that had lasted for five days. After three sessions, her balance had significantly improved and she had only two headaches that were much less severe that what she had become accustomed to.

At her fifth session, she reported less body pain and an improved sense of wellbeing. She discontinued her sleep medications and was feeling stronger and had more stamina. She said she still had the occasional headache, but they were less frequent and less severe.

Because of Carol’s commitment to her health care and her frequent visits to other practitioners, we were hesitant to offer therapies other than the neurofeedback, but we eventually learned that we offered tools that were unlike what the other practitioners used.

The Photonic Stimulator (PS) – a form of infrared light – was particularly calming for Carol. As an aside, she mentioned that she was bothered by a bone spur in her foot. We tried using the PS over the sore area on her foot and she reported the swelling and pain were greatly reduced within two days. The side benefit was improved balance and desire to get out and walk. We also introduced Carol to the Resperate™, a biofeedback tool to help optimize the rate of breathing. Breathing has a profound effect on mood and perception of pain. In fact, learning to use the proper muscles for breathing has been shown to lower or eliminate the need for pain medication.

Because of the blows Carol received to her head, we decided a Bilateral Nasal Specific would be indicated. In addition to all the modalities available in the office, we gave Carol homework. We had two major goals: To aid her proprioception (balance, coordination as well as an awareness of where she is in space) and to bolster her short term memory. Interestingly, research shows these goals can be facilitated through coordinated physical activity. We asked Carol to play catch, paddle ball, Twister™; dance whenever possible and toss bean bags at targets. We also asked her to do crossword puzzles since they are great for activating several pathways in the brain. It was a great day when Carol came in, holding a cup of tea. With a broad smile on her face, she walked toward me heel, toe, heel, toe; backed up, still heel, toe, heel; spun around and didn’t spill her tea. “Ta Da!” But our gains were met by a series of setbacks. There was an increase in head pain and sleep disruption followed by improvement. Then there was blurry vision and increased fatigue, but that too was followed by improvement. The only time I have witnessed my clients experience such setbacks is when there has been an impediment to cure, but what was Carol’s impediment?

It turns out there were several. When Carol lost her home, she moved into a subsidized apartment building where all the tenants had disabilities. During the time we worked with her, Carol’s apartment building had been undergoing restoration and refurbishing. The interior of the entire building had been painted. Poor ventilation meant the toxic fumes were lingering long after the several weeks it took to do the job. Then the balcony outside her apartment had to be rebuilt and waterproofed. Again, toxic materials were used, but Carol was more upset by the coming and going of the workers through her apartment. The exterior of her apartment building was power washed and painted. Again, toxic materials were used and the workers started work every morning at 6:30, disrupting Carol’s sleep. Ultimately, all the carpeting in the entire building was replaced. By this time, Carol was cogent enough to refuse permission to lay carpet in her apartment, but she said that fumes filled the building because of the antiquated ventilation system.

It is important to note that Carol was not able to report with insight on any of these events until she had undergone several weeks of neurofeedback sessions and the renovations were almost complete. Toxic exposures re-injure the brain and an injured brain is all the more fragile and susceptible to exposures. Insight into ones motivations and circumstances require resources not easily available to the injured brain plus Carol had no one in her life to ask for help; no one monitoring her home life. This is the unfortunate truth for most of America’s disabled citizens. By the end of the summer, the renovations were complete and Carol reported herself to be symptom free, but expressed concern that she could not maintain her gains without the neurofeedback. This is a common concern among our clients, but experience and research show that people tend to not only maintain their gains following treatment, but also continue to improve.

About a month later, Carol celebrated her birthday. We were all happy that she chose to miss a session to go to the beach with new friends. It had been our concern that she had not developed friendships and was relying on us for social contact. Unfortunately, upon Carol’s return the following week, we were faced with what appeared to be a significant setback. Carol presented with poor stamina, blurry vision, low grade head pain, poor sleep and a return of all her fibromyalgia symptoms. An acquaintance had given Carol money to buy a birthday cake for herself. Carol had gone to Safeway, purchased a standard sheet cake from their bakery and proceeded to eat some of it every day for an entire week. When we reflected that it seemed likely the gluten in the cake, along with the sugar and milk, had caused her return of symptoms, she was adamant that gluten could not be the culprit. She was convinced that her symptoms had returned in such force because she had missed a week of neurofeedback.

We decided Carol needed some tough love. We consulted with her other practitioners, agreeing to a common stance on the dietary issues, particularly gluten and casein. On her next visit, we explained to Carol that gluten and casein are poisons if the body can not metabolize them. We explained that because she had both laboratory results saying she was sensitive to gluten and casein and she reacted the way she did to the birthday cake, we had to believe they were a primary source of irritation to her entire system, including her brain. We assured her that we would continue to work with her as long as she needed if she became religious about excluding gluten and casein from her diet. We also told her that if she did not take this issue seriously, we would have no choice but to discontinue working with her. She agreed to humor us and remove all gluten and casein from her diet.

A month and a half later, after having thirty-five sessions with us, Carol had her last appointment. It was more a party than a clinical session. We celebrated the following changes in Carol’s life:

 

• Employed part time in health care

• Improved coordination and stamina

• Able to swim and hike

• Lengthy conversations, complex discussions

• Improved capacity for multi-tasking

• No headaches unless she eats gluten

• Feels her immune system is better – did not become seriously ill with an infection since starting our program.

• “I want others with brain injuries to benefit the way I did so I am willing to give up my spot.”

During our intake, we ask people to rate a variety of issues on a scale of zero to ten. Zero means the item is not a problem and ten indicates it is a severe problem. Carol’s pre and post training self-assessment of her top concerns follows:

Symptom Rating Outset Final
Problems following what you are reading 9 2
Problems with sequencing 9 0
Problems organizing your room, office, paperwork 9 0
Problems with stamina 10 1
Trouble sleeping at night 10 0
Forget what you are doing, what you need to do 10  
All over pain 9 1
Problems with speech or articulation 4* 1
Tinnitus (ringing in the ears) 5 1

*I would have rated Carol’s initial speech problems as much worse and her final number as a zero. Often brain injured people do not recognize how bad things really are and are more critical and aware following treatment.

When I asked why the final assessment for “Forget what you are doing, what you need to do” was blank, she grinned and said, “Oops. I forgot.” Teasing me was a clear sign her sense of humor had returned.

A year and a half after our last visit, I contacted Carol, asking how she was doing. This is her reply e-mail:

Thanks for checking in.  I am actually doing really well.  Doing all of my homework assignments.  I am on a cleansing diet - no dairy, no wheat.  I am really being careful like you said.   I also met another client of yours, J---.  My Naturopath introduced us at his office.  We exchanged phone numbers.  I am feeling good, memory is good; balance is much better.  Stamina and strength good.  I actually feel "normal” & things are good.  I joined the downtown YWCA and am working out - trying to get strong and in shape again.  My sleep cycle is back to a good one. Early to bed and up earlier.  I actually have a social life too.  I visit my friends, go to happy hour for cheap food (no alcohol), go out to the Marina to visit my friend on her boat and have a pot-luck with a bon-fire.  I am not depressed and living a life that includes friends, exercise and new brain stimulating activity.  I even have an on-line boyfriend. Ha. He is an I/T guy that is also a yoga instructor.  Nice combination - anyway the flirty conversation seems to be good for my dopamine receptors sites (medical talk).

It just seems like I am "having a life". Hope you are doing well. Thank you again for giving me my life back.
Please say hello to your Hubbie and kiss all of my little baby doctors (chickadees) for me.   

Thanks for thinking of me.

More recently I talked with Carol. She moved out of the subsidized housing and into a townhouse in a safe and friendly neighborhood. She is friendly with her new neighbors and has a special “gentleman friend” with whom she hikes and attends cultural events. Her life continues to improve.