My Life in Brain Injuries

An impediment to cure is a burden that holds someone back from experiencing full health. The impediment may be something in the diet the person can’t metabolize; something toxic in the environment; a parasite or infection that saps or pollutes the person’s system; heavy metals, systemic mold, poor blood sugar regulation – the possibilities are extensive. People have told me it’s too expensive or too difficult to address their issues, but I believe the effect of the unaddressed impediment is much more expensive in the long run.

What did we discover about Carol’s situation?

It turns out there were several issues, some short term but damaging; others long term. When Carol lost her home, she moved into subsidized housing managed by a faceless bureaucracy. 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 lingered 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 who accessed the balcony through her apartment. She felt she had no privacy. After the balcony was repaired, the exterior of her apartment building was power washed and painted. In addition to using toxic materials, the workers started 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 use of a toxic, off gassing adhesive and the inability of the antiquated ventilation system to actually vent.

Carol was not able to report with insight any of these events until she had undergone several weeks of neurofeedback sessions and by that time, the renovations were almost complete. We had no resources to remove her from the situation, but it would have been helpful to understand her circumstances.

Toxic exposures re-injure the brain and an injured brain is even more fragile and susceptible to these exposures. An unfortunate cycle.  Insight into one’s circumstances requires resources not easily available to the injured brain and Carol had no one in her life who could act as an advocate. There was no one who cared specifically about her  monitoring her domestic situation. This is the unfortunate truth for many, if not 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. The brain is exceedingly interested in efficiency and, learning from its own changes, becomes more efficient. A feedforward situation.

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 was relying on us for her social contact. Unfortunately, upon Carol’s return the following week, we were faced with what appeared to be a significant setback. Carol had 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 – there was ice cream – 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 and agreed to a united 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 cannot metabolize them. We explained that because she had laboratory results saying she was sensitive to both 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 meticulous 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. (We had a waitlist of people who needed help.)

Although Carol expressed complete disbelief in our position, she agreed to humor us and remove all gluten and casein from her diet. We assured her we could re-test for gluten and casein exposure if it appeared she did not exclude them.

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 using her nursing skills.
• Improved coordination and stamina
• Able to swim and hike.
• Able to carry on lengthy and complex discussions.
• Improved capacity for multi-tasking
• No headaches.
• Feels her immune system is better – did not become seriously ill or have an infection since starting our program.
• She said, “I want others with brain injuries to benefit the way I did so I am willing to give up my spot [on the shift].”

During our intake, we ask people to rate a variety of issues on a scale of zero to ten. Zero means the individual feels the item is not a problem and ten indicates it is a severe problem. The following graph shows the improvement Carol made from her first visit with us to her last:

*I would have rated Carol’s initial speech problems as much worse and her final number as a zero. As is often the case with brain injured people, Carol did not recognize how slurred and halting her speech was when she first came in. On the other hand, following treatment her ability to be more discerning also meant she was more critical of her performance.

When I asked Carol 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. I’m 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.