Brain Injury Survivor's Guide

According to the International Brain Injury Association, brain injuries are the leading cause of death and disability in the world! Those living with an injured brain face memory problems, cognitive problems and behavioral problems.

Brain injury is the "signature wound" for American soldiers returning from Iraq.

Neuropsychologist Glen Johnson estimates 75% of brain injury victims have no insurance coverage for brain injury rehabilitation.

Beth Jameson, of this lens, has lived with brain injury for over 17 years and has achieved a remarkably successful life. Strategies developed by Beth and her husband have been recently published in Brain Injury Survivor's Guide.

Be sure to check out Beth's Brain Injury Blog

"This book was just what I needed to help me understand what my son is going through and how I may be better able to help him. Thank you so much Larry & Beth!! It's only been 8 months but he's doing great and I love the lists the book uses to help keep things organized and remembered. I also love your website! For anyone who is going through TBI or any form of brain injury this book is a must."

source - Amazon.com

In a moment everything changed. I stood in front of the hospital elevator completely dumbfounded and bewildered as tears welled up from my very soul.

'I don't expect her to survive the trauma' ricocheted through my brain faster than those little spheres in a pinball machine. Before I could form a sentence, another light would flash inside my head and another bell would ring. What in the world was happening?

"What happens in the next 24 hours is critical," the doctor continued as I tried to focus.

Two hours earlier I had been sitting at Beth's bedside talking to her about things at home and the surgical recovery process. She was excited that one of her co-workers, Lisa, would arrive soon with frozen yogurt, one of her favorite treats.

Lisa sat in the family room clutching a soggy, brown paper sack. The look of concern on her face told me as much as the doctor whose words were not really registering.

"A R D S."

"One of the leading causes of death in Vietnam."

Shortly after I had left for home so I could be there when our 13-year old returned from his fishing trip with one of my co-workers, Beth was discovered near death by a nurse. She wasn't breathing. Emergency procedures were quickly initiated. The surgeon's office was called. He was on the golf course. Time passed. A pulmonary specialist was called.

Time passed. Too much time. The doctor who met me getting off the elevator was the pulmonary specialist. Beth's mother was there when the doctor had arrived and overheard the specialist berating the staff for not contacting her earlier.

A day later I heard the same 24-hour message with a twist. Beth's kidneys had stopped functioning, and a nephrologist was called in for consultation. My wife of twenty years lay motionless, sedated with morphine in the hope that her body would heal itself.

A machine breathed for her. I stared at the machine. The day before surgery Beth had given me a Living Will and a Health Care Power of Attorney. Her words now haunted me, "If something goes wrong, I don't want to be kept alive by machines. I don't want to be a vegetable."

Yes, in a horrible moment where something did go wrong, everything changed. I pleaded with the machine. 'Do your thing buddy, else I'm going to be in a lot of trouble.'

It was January of 1970 when we had told our families that we planned to marry on Memorial Day, May 31. Beth had been planning her wedding day since her preteen years, and the preparations flowed smoothly until April.

I had driven the 100 miles to Beth's house to celebrate her 19th birthday. My father called, "Your orders came in. You are to be at Fort Polk, Louisiana on May 29." The conversation lasted only a moment - a simple, solitary moment, and it was one that changed our wedding plans.

After finding a new preacher to perform the ceremony and sending out a second set of invitations and changing our honeymoon plans, we were married May 22. Our honeymoon was spent in a motel near my college campus so I could take my semester final tests. I completed the last final on the afternoon of May 28, just twelve hours before my bus was to leave for Fort Polk.

I stared at the machine again, then at Beth. What I would give for another six days like our honeymoon! But my five minutes were up.

During this time, loved ones were allowed to see Beth four times a day for fifteen minutes, and only two family members at a time were allowed into the Medical Intensive Care Unit. Between my five to eight minute sessions I tried to work and to provide comfort to our children.

Each of my trips to Beth's room ended the same. I walked quickly to the elevator, rode down to the main floor, hurried out into the parking lot and cried uncontrollably. My soul mate was in danger, and there was nothing I could do to help her, to protect her, to save her.

"We may need to amputate her toes," was the message of the day. Oxygen being pumped into Beth was not circulating throughout her body. Her toes and fingers had turned a purplish color. The team of doctors was growing as yet another specialist was called in.

For the past year Beth and I had taken dance lessons. Dancing had become our primary recreational activity. There had to be an alternative to amputation. A nurse explained how I should massage the toes and feet with a miracle ointment. She cautioned, "Be sure not to get it on your skin. It could cause severe headaches."

I'm quite sure my glare spoke more than I would verbally express at the time. Me having a headache or Beth having amputations? I know the nurse was trying to protect me; my heart thought her caution was ridiculous.

The subclavian attached to Beth's upper chest allowed the staff to hook several IV bags to her. The kidneys were not processing the liquid, and her body was blowing up like a balloon. She gained 25 pounds lying there in her morphine-induced sleep. Yet, the days continued to pass. Beth was not visibly improving, but she was still alive!

There was another family living in the waiting room with whom we developed a relationship. Their loved one was also battling ARDS. The time between those short visits to see our loved ones were spent nourishing and encouraging one another. A twofold sadness enveloped our entire family when their loved one died.

Not only were we saddened by our new friends' loss, but we were horrified by the sobering fact that she had died fighting the same problem Beth was struggling to overcome. Her body fought those many complications for fourteen days and, almost miraculously, she began breathing on her on. The breathing tubes were removed.

Beth's mother moved into a private room with her; she would not be out of our sight again. We now learned about something new.

During that brief period Beth was without oxygen, she had suffered an anoxic stroke that resulted in brain injury. She did not know who I was. She did not know she was married, and she did not know she had two children.

In a moment without oxygen, everything changed. Medical treatment for stroke is most effective when begun within 24 hours of the cerebral accident. Beth never received such treatment. No one knew. The team of doctors had a full plate trying to save her life and prevent amputations, which they did.

Thirty days after she had entered the hospital for routine surgery, Beth's parents drove her to a strange house in a strange town to live with a strange family. She slept on the sofa, accepting that I was her husband because her mother told her I was but not ready or willing to share a bed with me.

Each night I sat in the floor beside the sofa, watching the rise and fall of her chest and counting her breaths. Armed with absolutely no medical knowledge, I watched. If I determined she wasn't breathing correctly, I would shake her until her breathing satisfied me.

Continued in Part II

Six days after coming home, Beth was struck with severe head pain, nausea and vomiting. There were periods of time when she lost all her vision. I was as frantic as I was helpless and rushed her to the emergency room. Nausea medication helped. It was Saturday night, and I couldn't make an appointment with our primary care physician until Monday. The symptoms were gone by Monday.

On Friday, six days after the first episode, severe head pain, nausea and vomiting struck again. We used the nausea medication we had been given and, just like the first time, the symptoms disappeared in 48 hours.

Our PCP referred us to a neurosurgeon who prescribed medication for migraine headaches. Still, six days after the second episode, a third and identical 48-hour episode hit. And six days after that. And six days after that. And so on.

During the good days, Beth did nothing. She tried watching television but was unable to concentrate and follow the storylines. She tried reading and discovered she couldn't. She wanted to become a part of our family and offered to cook, but she did not remember how.

After standing in the kitchen for fifteen minutes, she asked if I would help. There were no pots or pans laid out. No utensils had been pulled from the drawers, and there was no food laid out.

"I don't know what to do," she said. The hurt and helplessness in her eyes crushed my heart.

I pulled three cans from the pantry, three bowls from a cabinet and three large spoons from a drawer. I laid a can opener next to the cans and told her the setting to use on the microwave. I returned to watch television with our youngest son.

About fifteen minutes passed and Beth announced, "It's ready, but it doesn't look like much."

On the kitchen counter was a steaming bowl of green beans, two empty bowls and two unopened cans. She did not remember that I had placed three cans on the counter. When preparing the green beans, she did not see the other two cans.

Months passed before we learned that Beth had suffered a stroke. During a trip to an ophthalmologist who pronounced her vision as 20/20, she asked, "Then why can't I read?" He ordered an MRI, and we soon knew why she complained of vision problems. She had no peripheral vision. That explained why she did not see the other cans that night she tried to cook.

We had been told that her memory and speech problems were probably caused by the amount of morphine that had been pumped into her during those fourteen days in MICU. Those problems were not getting any better, even months later. The severe 48-hour migraine headaches had, at least, changed from every six days to twice a month.

A television advertisement caught my attention. Not far from our house was a neurosurgeon that specialized in headache treatment. We made an appointment, and it was that phone call, that decision, that proved to be the first domino in a string that led to Beth leading a fruitful and rewarding life once again.

Dr. Corbitt specialized in headache treatment, but she had knowledge about the effects of brain injury. She immediately arranged for Beth to see a psychologist who stated plainly that Beth needed to go to a neuromedical facility for comprehensive treatment.

Our health insurance company refused to pay for the expensive treatment. The 30-day evaluation would cost over $20,000.00, and that was simply to see if Beth qualified for treatment. We hired an attorney who put together a packet of testimony and recommendations from numerous medical professionals. He laid siege to the insurance company, and they reluctantly agreed to pay for the evaluation.

Beth moved out of our house to take up residence at Timber Ridge Ranch, a neuromedical facility for people who had suffered head injury. I was able to assume a more active role in her treatment than we had originally planned. Two weeks after Beth was admitted to Timber Ridge, I lost my job. I was offered employment opportunities in Chicago, Houston and, even, California. No, thank you.

Months later, Beth returned home. She still had a permanent brain injury. She still had neither peripheral vision nor short-term memory. Her personality, though, had begun to change from being a victim to becoming a successful person once again.

Together, we developed strategies that would compensate in areas where her brain was not performing well. We made lists; we made a lot of lists that included instructions for how Beth was to apply her makeup in the mornings to the steps she was to take in performing her job functions.

We made shopping lists. We wrote down driving directions. We wrote down cooking instructions. Anything that she needed to perform became a how-to list.

In a moment, everything changed. A moment when a surgeon made an inadvertent cut during Beth's first surgery. A moment when a decision was made to pump her with blood transfusion after blood transfusion after blood transfusion that caused her to develop ARDS. A moment during ARDS when she stopped breathing. A moment during that time of no oxygen when she suffered a stroke. And a moment when Beth decided to become a brain injury survivor.

Today, seventeen years later, Beth is a strategic sourcing analyst in the information technology sector. She works for an international S & P 500 company. Yes, in a moment everything did change, and I can think of no person on earth I admire more than my wife of thirty-seven years. She could not change that moment; she could only change her attitude toward it.

Brain Injury Survivor's Guide is our effort to help others who are victims of brain injury. It doesn't matter how you got an injured brain: drugs, brain bleed, stroke, gunshot, IED, whatever, the road to finding a successful lifestyle after brain injury is one that must be travelled.

That's why we call our book a Guide. It was developed to provide information about the actual steps we took, and how each family affected by brain injury can do the same.

Brain Injury Survivor's Guide is now available as an interactive eBook for the low price of $7.99.

Visit this lens for more information.

Brain Injury Survivor eBook

The website supported by this lens, Brain Injury Guide, has received the prestigious Silver Award from the American Association of Webmasters. The award notification stated, "We see all the hard work and dedication that you have put into constructing your web site and your efforts are well deserved. Your site displays: A nice clean Design and Layout of Website, with quality content and informative information for your visitors."

The Brain Injury Guide website has been designated as a Learning Fountain by The Learning Foundation.

We appreciate this acknowlegement of expertise and information presented on the site.

The Northeast Center for Special Care specializes in rehab for Traumatic Brain Injury (TBI), Neurobehavioral Disorders, Spinal Cord Injury, Ventilator Care and Ventilator Weaning.

They have selected Brain Injury Guide as Website of the Month.

Read the article at:

http://www.northeastcenter.com/website-of-the-month-jan08.htm

Now there is a Brain Injury Internet toolbar that can be added to Internet Explorer or Firefox that can search everything on Google but also has dedicated links to Brain Injury Information.

You can also add your local temperature to it, and it has a radio station button where you can select your favorite radio station and listen right from the toolbar.

Find more information at: Brain Injury Toolbar http://www.braininjuryguide.org/brain-injury-toolbar.html

Beth, thank you so much! I loved your pictures and the site and what you have done/will do for people. As we have learned, there is much we cannot explain, but it was just one week ago tonight I was at a Contra dance and met a lady who had suffered some kind of brain injury three years ago. She now has a beautiful standard poodle as a working companion. I will see her again and I will give her your book site info. - Ellen

Emotions and the filter that controls them is located in the front part of the brain (frontal lobe). Imagine any of your emotions as music playing on a stereo at full volume. If you are sitting a couple of feet from the stereo, there is a good chance you cannot really hear the music; you hear a loud sound. The volume may even hurt your ears.

So...you reach out and adjust the volume downward to make your music more "socially acceptable" to you, if not to anyone else. That's the same way a brain's filter works. It tones down the emotion to a socially acceptable level.

If the filter wasn't there, we would see a lot of people walking in the street laughing hysterically or sobbing painfully, or turning the air around them blue with profanity.

But, thank goodness, the filter is there, working hard day in and day out -- unless it's injured.

Cognitive problems with memory, mental processing, and organizational planning excite the emotions when confusion sets in: why can't I remember what's his name? it's right on the tip of my tongue.

Emotion problems surface:

Anxiety is common because things are not like they used to be. Unanswered questions can lead to Intense Fear. Confidence drops like a rock.

The injured person becomes more Irritable and can easily lash out at others over what might appear to be a simple thing. But it is not simple in their mind. Their injured mind.

A sort of Emotional Numbness can set in; professionals usually say, "flat personality." The flat personality is evidenced by a lack of drive, or a lack of initiative. "Why should I try?" The slowed thinking skills and the memory problems make otherwise simple tasks seem like climbing Mount Everest.

Helplessness can lead to Hopelessness can lead to Guilt can lead to Depression.

It is absolutely essential that family members learn how they can help their loved ones deal with these emotional problems. It is essential that family members know that the medical community who may be part of the therapy team will soon disappear.

But the emotional problems associated with brain injury will not disappear. That's why knowledgeable family members are so essential to a successful lifestyle for persons suffering from brain injury.

They are the unsung heroes, the forgotten ones. But they are the best therapists a brain injured person can have.