This chapter on life with a brain injury is excerpted from Garry Prowe's book, Successfully Surviving a Brain Injury: A Family Guidebook.
In 1997, Garry's wife, Jessica, sustained a severe brain injury in an automobile crash. "At the time, I spent way too much time accumulating the information I needed, not only to understand the medical aspects of Jessica's brain injury, but also to handle the myriad insurance, financial, legal, personal, and family issues that accompany a serious blow to the brain. I recognized the need — that stil exists today — for a book that comprehensively addresses the wide variety of issues families face in the first few months after a brain injury.
"To research this book, I assembled a panel of more than 300 survivors, caregivers, and medical professionals who resonded to my email questions and reviewed portions of my writing.
"For us, this project is a labor of love. All profits fromt he sale of this book will be donated to brain injury organizations."
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The brain oversees everything we do:
- How we move our body (physical)
- How we perceive, recall, and process information (cognitive)
- How we communicate with others (communication)
- How we feel (emotional)
- How we behave (behavioral)
- How we interact with others (social)
It’s easy to see how a serious blow to the brain can have a devastating impact on the survivor and those around her.
As different parts of the brain control different functions, the impairments acquired by a survivor depend on the precise location and gravity of her injury. Since every injury is unique in the damage it causes, every survivor acquires a unique mix of complaints.
It’s impossible for a doctor to review your patient’s CT scans and MRIs and predict the deficits she will acquire. Certain functions, however, such as memory, language, and information processing, are lodged in multiple areas of the brain and are almost always affected by any serious injury.
Later in this section, I list the more common impairments of a serious brain injury, divided into the six categories described above. As you review these lists, remember, no one survivor will experience all of these complaints.
There is a powerful cause and effect relationship among the impairments produced by a brain injury. Some can be called primary; others can be called secondary.
Primary impairments are those directly related to brain damage. These include most of the complaints in the physical and cognitive categories. Secondary impairments are those that develop as a consequence of one or more primary impairments. Communication and social complaints mostly are secondary impairments. Emotional and behavioral complaints generally occur as both primary and secondary impairments.
This can be confusing. So, let’s consider five examples:
- Mary was a marathon runner; she now walks with a distinct shuffle (primary physical). This humiliates her (secondary emotional). So she rarely leaves her house (secondary behavioral and social).
- Susan was training to be a doctor. Her injury dashed her dream (primary cognitive). She is now depressed (secondary emotional) and not much fun to be around (secondary social).
- Changes in the chemistry of Beth’s brain cause her to be jittery (primary emotional). Medication helps, but the drugs cloud her already foggy thinking (secondary cognitive). She gulps Mylanta to quell her anxiety-driven heartburn (secondary physical).
- Nancy was an auctioneer. She now has a problem expressing herself (primary physical and cognitive, and secondary communication). She lost her job and is worried about paying the rent (secondary emotional). Her anxiety causes her to unconsciously tense her muscles, aggravating the pain in her spastic arm (secondary physical).
- Martha’s major complaints are disinhibition (primary behavioral) and impaired short-term memory (primary cognitive). She’s the life of the party. But, she lost her job as a waitress because she spent too much time flirting with the customers (secondary social) and mixed up her orders too often (secondary communication).
It is important to understand that secondary impairments can be just as debilitating as primary impairments.
Warning: Some caregivers tell me they preferred not to know what the ultimate outcome might be for their survivor. Others, like me, wanted to know all the possibilities right away: the worst case, the best case, and everything in between. If you’d rather not speculate about the future, that’s okay. Just jump to the next section.
Physical complaints are the easiest to detect and the quickest to be treated. There’s no hiding that somebody walks with a shuffle or has little coordination in her left extremities. While many physical deficits are permanent, others can be remedied or moderated with physical therapy and other types of treatment, such as exercise, surgery, and prescription medication, taken orally or injected into troublesome areas.
The one physical complaint every survivor experiences is fatigue, particularly during the early days of recovery and rehabilitation. The healing brain devours energy. The patient’s remaining get-up-and-go is gone quickly. The injured brain must work double-, triple-, or even quadruple-time to perform even simple tasks. In rehab, Jessica sometimes slept sixteen or more hours a day. Even today, she frequently needs eleven or twelve hours of sleep to re-energize herself.
Some of the other typical physical complaints caused by a brain injury are:
- Partial paralysis
- Chronic pain
- Disturbed sleep
- Poor endurance
- Speech difficulties
- Swallowing difficulties
- Changes in appetite
- Muscle weakness
- Altered sexual response
- Changes in appearance
Also, it’s not uncommon for survivors to find one or more of their senses — sight, hearing, touch, taste, and smell — altered by their injury.
Finally, many folks living with brain injury are clumsy due to impaired muscle coordination, balance, and motor control.