My Life in Brain Injuries

In April 2000, Katherine, a 41-year-old female, was riding her bicycle when a car traveling forty miles per hour hit her. She lost consciousness and was still lying on the ground when the EMTs arrived. She was transported to the hospital where it was determined she was not seriously injured and should be released. Despite a nurse expressing concern about her condition – Katherine could not remember her own name or say what day it was – she was given Vicodin and sent home.

Over the next several weeks Katherine returned to her physician’s office repeatedly, complaining of head pain and increasing mental fog. She was prescribed more Vicodin. In May, while at work, Katherine’s left leg collapsed, and she lost mobility in her left arm. Her MD sent her for a course of physical therapy. She regained the use of her left leg after a few months of physical therapy, but the referring physician ignored the rest of her symptoms.

Increasingly, she was unable to process new information. For example, during this time, she moved into a new apartment and although she could consistently get on the correct bus home and get off at the right stop, she repeatedly lost her way from that point, sometimes having to use the telephone to call friends for help.

Katherine, even in this haze, realized things were seriously wrong and getting worse. In December 2000, she found a neurologist who listened to her complaints. He prescribed acupuncture and ordered a series of cognitive tests.

About this time, a family member visited with Katherine and was alarmed by what she found. Instead of the woman who remembered minute details about every aspect of her busy life, there was a fuzzy thinker who needed to write down every detail in order to get through her day. She used a small spiral notebook, when she remembered she had it, and always returned it to her right hip pocket. The problem repeatedly arose when she needed to consult her notes – she forgot the notebook and the pocket. It is common in cases of Traumatic Brain Injury (TBI) for people to lose awareness of things that are not in their line of vision.

The relative phoned Katherine’s parents and told them what she had observed. At that point her parents pressured Katherine’s sister living in Portland to take Katherine in until she could get back on her feet.

By the time Katherine and her sister arrived in my office, it was August 2001 and Katherine had been diagnosed with post concussive syndrome – the consequence of TBI. Her chief complaint was that she could no longer learn. Known in her family as a voracious reader who “consumed” books, they were perplexed that she could no longer track a 30 second television commercial. Katherine was also known for her uncanny ability to remember names and faces. No more. Katherine’s sister complained that although Katherine had met the next-door neighbors several times, she was unable to recognize either of them.

In addition to frequent headaches and body discomfort, Katherine complained of a lack of energy. Her family characterized this as a loss of ambition.

This distinction is extremely important for people to understand. Generally, the person with TBI is acutely aware of deficiencies, but unable to communicate much more than a vague, “something’s not right.” On the other hand, close friends and family are often unaware of any anxiety the survivor may be experiencing and may be outspoken about what they see as increased confusion, forgetfulness and, perhaps, willful laziness or malingering.

By the time cognitive deficits set in, it is not uncommon for the TBI survivor to have healed most, if not all, external signs of injury. Family, friends, and co-workers often experience compassion fatigue. It’s hard to imagine what is going on inside the skull when the person looks “just fine”.

I take an extensive history. At the time, the only neurofeedback unit I had was EEGer, a wonderful system, which is based on addressing arousal levels. As with many TBI survivors, Katherine presented with symptoms of both over and under arousal.

 My initial recommendations involved addressing Katherine’s breath patterns. It has been my observation that most trauma survivors have a “tucked” posture which impedes breathing. With structural integration and use of biofeedback equipment that helped her see how her breathing patterns and cardiac activity interacted, she quickly developed better posture and was able to breathe more freely. Also, she reported finding abdominal breathing to be both analgesic and soothing to her underlying anxiety. I also suggested she receive massages. The great social anthropologist, Ashley Montague, described the skin as “the surface of the brain.” There is no spot on the body that does not have neural connections to the brain.  Safe, soothing touch that relaxes muscles can also soothe the brain.

             I think of massage as the most basic form of neurofeedback.

After our first session of EEGer, Katherine started sleeping more – sometimes more than she wanted. Prior to the accident, she reported having been very active and never felt a need to sleep more than three or four hours per night. I tried to convince her that her brain needed to have down time, but it was a difficult sell and she sometimes expressed dissatisfaction with her new sleep pattern.

On her third visit, she said, “After the accident everything shut down. The EEG seems to be bringing everything back.” Even so, it was a slow process.

By August of 2004, we had completed 135 sessions. I suspect that if LENS had existed at that time we would have made much faster progress. She rarely had head pain, had consistently restful sleep and quit smoking – a pleasant side effect of the training. Over the span of our work together, she moved out of her sister’s home, enrolled in a community college, and completed a certification course in a technical program. She took the initiative to apply for and receive rehabilitation counseling through the state. After her class work was complete, she received a job offer on the East Coast and Oregon rehab paid to move her there.

At the time of her departure, she was still unhappy with her condition, expressing regret over the person she would never be again. At the same time, she recognized her accomplishments, her improved health and physical well-being.

When she arrived in her new city, she transferred to that state’s rehab program where they offered her counseling. She reported that she told them in no uncertain terms that she wanted more neurofeedback, not talk therapy. When she sent me an email to ask if I knew the neurofeedback provider they had offered to assign her, I was thrilled. A neuropsychologist and a psychophysiology pioneer, this doctor embraced neurofeedback in 1984, well before most clinicians knew it existed. Her progress since working with him has been nothing short of stunning. A couple of years after Katherine relocated, I received this email from her:

If it hadn’t been for you, Dr. B., and neurofeedback, I’d be a veggie. I swear, I’m NORMAL again. Well, normal for me… I can REMEMBER what I read!!

I would like to do something so that more people become aware of the benefits of neurofeedback.

I’m working as an intern at NCI / NIH. Actually the computer support team for NCI.  AND none of this would have been possible without you, Dr. B. and Neurofeedback.