Centre for Neuro Skills
Brain injury can change nearly everything, not only in the injured person’s life, but also within the lives of his or her family members.
Early after a brain injury, family systems become embroiled in the injury as they address arising issues. Sleep gives way to ICU vigils. Quiet moments give way to prayer. Casual discussions give way to serious conversation. These days are ruled by fear, with small glimmers of hope to serve as momentary relief.
Recovery, to a greater or lesser degree, eventually occurs. Time passes, hospital stays end, and the injured often return home.
Unfortunately, families are all too often solely responsible for redefining a new normal, as our society does not yet effectively provide sustained support. Understanding how to cope with the many changes after brain injury, and a willingness to implement coping mechanisms will make all the difference.
These eight tips are a great place to start:
Counseling can ease burdens and facilitate grieving, adjusting, and managing, all without giving up hope. However, not all families can afford such care, and for that reason, there are the other seven tips.
Realistic optimism, positivity, and hope offer an opportunity for a brighter and happier new normal. Humor can help keep spirits high. And in spiritually oriented families, solace and confidence come from actively practicing their faith.
Everyone handles grief and the subsequent changes within their lives differently. However, it is important to remember that each family member, no matter their role in the injured person’s life, is going through these changes together. Communication is a portal to common ground and unity.
Scheduling a regular time to discuss the injured person, and any related issues, can help family members to open up, creating a more approachable and manageable situation.
Imagine a wagon wheel with a hub and spokes. Families often operate by moving one member or another in and out of the center of the wheel, as his or her issues and needs call for priority. After a brain injury, it can become habitual to keep the injured person in the center of the wheel. It’s important for families to find a way to move others in and out of the circle again.
Taking care of oneself can seem inappropriate, especially for parents. However, if one uses oneself up in the care of others, there will come a time when the person has nothing left to offer others. Take time for yourself, and maintain some semblance of your hobbies and interests.
Because of the many demands of brain injury, it can be difficult to find the energy or money to socialize outside of the home. And it can feel wrong to seek pleasure while a family member with brain injury cannot do the same. Yet, socializing can help heal by providing a healthy sense of perspective.
Tell your friends what works, when you need to discuss the injury, and when you need to discuss anything but the injury. Friends and family may need your patience and forgiveness, as they may offer advice that is not useful or feels judgmental. No one knows how to act in these situations, and they are no exception.
7. When to Feel
There is time for grieving, sadness, and loss. So too, there must be time for hope, joy, and laughter. It is okay to take out the “pity pot” filled with your sorrow, despair, and loss. But then, with deliberation, put the “pity pot” back in the closet for another day. You will use it again and again, just always remember to put it away. In this way, you can avoid becoming mired in grief.
Some parents fear doing anything that might look or feel like they’ve accepted their child’s level of disability. It’s good to desire further growth and improvement post-injury, but there is a limit, and it is not healthy to be consumed by the drive to wring more recovery out of an injury. It is crucial to balance both acceptance of your new normal and hope for continued improvement.
One day I noticed the fine print on a cereal box, “Contents may settle during shipping.” The advisory served to avert any concern I might develop when opening the cereal to find it only three fourths full. I liken this advisory to balancing acceptance. So too will your “contents” settle as you move through your family’s changed world. One can and should actively explore changes wrought by brain injury in the family because realization of these changes will happen eventually, with or without your consent.
Those who find a way to bring balance back into their world are more apt to successfully take on the ripple effects of brain injury on their family dynamic. And, to be sure, the injured person will also flourish to the best of his or her ability in this normalizing and positive environment.
So, please make the decision to thrive. Be a light for you and your family. Find opportunities each day to laugh, dance, socialize, and communicate deeply. In this way, you can adjust to and manage in your new world.
Most people understand the important restorative value of sleep. However, the detrimental effects of sleep disorders are not as plainly understood and discussed.
Sleep disturbance is found in as many as 40% of individuals who have sustained a brain injury. Common sleep disorders include sleep apnea, difficulty falling asleep, difficulty staying asleep, difficulty awaking, and difficulty in achieving beneficial cycling between the various stages of sleep. This post will discuss a few key sleep disorders, the ramifications of sleep disorders, and proper and improper solutions.
Snoring is the most obvious indication of sleep apnea, however snoring is not conclusive of sleep apnea. In fact, the only way to determine the presence of sleep apnea is through polysomnography (a sleep study). While there are devices that offer detection via headbands and other mechanisms, our research has shown that these devices are quite inaccurate and miss the majority of individuals with sleep apnea.
Sleep apnea has been linked to brain damage in heretofore healthy individuals. For a person who has already sustained a brain injury then, this link between sleep apnea and brain injury further emphasizes the drastic need for diagnosis and treatment.
Negative Effect: Growth Hormone Deficiency
Disruption of sleep at the wrong time in the sleep cycle may disallow the body’s production of growth hormone. If the body does not produce this important hormone in the early morning hours, it will not be available throughout the day. Exercise can help to increase the body’s production of growth hormone, however, this increase will not replace that produced in the early morning hours. Growth hormone deficiency leads to tremendous weight gain, high lipid levels in the blood, fragile bones, depression, cognitive problems, and, most importantly, real problems with the brain’s metabolism of oxygen and glucose (its two primary fuels). Growth hormone is extremely important to the brain’s ability to repair and maintain myelin, the insulating sheath that surrounds axons and impacts their speed of transmission and their plasticity.
Negative Effect: Memory
During normal sleep, particularly during REM cycles, information using large amounts of the brain’s resources is consolidated into more efficient holdings, and new information fuses with existing information. However, in those with sleep apnea and other sleep disorders, REM cycling is disrupted. This can negatively affect the brain’s ability to repair itself, ability to protect itself, memory function and metabolic efficiency. So, normalizing sleep is crucial.
Inefficiency of Medication as a Solution
Those who have difficulty falling and/or staying asleep may rely on over-the-counter sleep aids with or without medications that relieve pain. The drug (Benadryl or diphenhydramine hydrochloride) used in these over-the-counter agents actually can cause difficulty with memory, and a hangover effect the following day.
All medications used for sleep disturb REM cycling. As the importance of REM cycling was explained above, this consideration lends to suggest sleep aiding medications should be used with caution and infrequence.
Proper Solutions to Sleep Disorders
Good sleep hygiene is the most useful approach to overcoming many sleep disorders. This includes avoidance of caffeine; regular daily exercise before 7 PM; dark, cool, and quiet sleeping quarters; use of calming activities such as reading before bed; regular bedtime and wake time; and avoidance of waking to urinate or undertake other activities in the night. Alcohol consumption can result in awakening in the night as glucose levels in the blood drop, so alcohol should not be used to induce sleep.
After a brain injury, developing, guarding, and maintaining a routine of 7 to 9 hours uninterrupted sleep every night is critical. A good sleep study, use of an autoregulating BiPAP device for sleep apnea, daily exercise for 45-60 minutes, and good sleep hygiene are a good start to enhancing the body’s own abilities to heal, repair, and protect itself.
In 1977, Ed Breen of the Home Insurance Company identified a problem within the healthcare provisions for workers injured on the job. He approached a group of academics with a win-win solution, if it could be accomplished.
A number of individuals acquired catastrophic brain injuries in the scope of their employment with Mr. Breen’s company. Despite months of treatment in hospitals, these people were often left with tremendous levels of disability. Such disability translated to a very poor quality of life for the injured persons and their families, and a very high cost of continued care over the injured persons’ lifetimes.
Mr. Breen’s solution:
Reduce their levels of disability to an extent greater than that achieved at the hospitals, which leads to:
So, advances were made over the last 40 years in treatment of people who have sustained brain injuries through work-related incidents. Worker’s compensation professionals specifically designed an entire continuum of treatment to manage the catastrophic claims of their parent companies in concert with health professionals. Treatment was extended to rehabilitation in post-acute care; results spoke for themselves with many more people returning to higher levels of productivity and overall health, thus reducing long-term health costs.
Worker’s compensation has improved brain-injured persons’ level of care from what it was in 1977. I ask now, is that enough?
In California, the guidelines that are used by carriers and utilization reviews organizations are simple. They are presented from the Medical Treatment Utilization Schedule (MTUS) below in their entirety:
“Patient rehabilitation after traumatic brain injury is divided into two periods: acute and subacute. In the beginning of rehabilitation therapist evaluates patient’s functional status, later he uses methods and means of treatment, and evaluates effectiveness of rehabilitation. Early ambulation is very important for patients with coma. Therapy consists of prevention of complications, improvement of muscle force, and range of motions, balance, movement coordination, endurance and cognitive functions. Early rehabilitation is necessary for traumatic brain injury patients and use of therapy methods can help to regain lost functions and to come back to the society. (Colorado, 2005) (Brown, 2005) (Franckeviciute, 2005) (Driver, 2004) (Shiel, 2001)”
The above definition does not reference the continuum of treatment that has been used consistently over the last four decades. The continuum is shown below:
It is said that if “one has treated one person with a brain injury, they have treated one person with a brain injury.” That is to say, no two people who sustain a brain injury are alike. Brain injury is one of the most, if not the most, complicated medical conditions to be encountered. And, brain injury is often accompanied by other system injury or involvement.
Not only is brain injury tremendously complex, but so must be treatment for brain injury. The above continuum provides for numerous treatment setting options, each with distinct dosing advantages for specific subgroups of patients who are experiencing unique constellations of deficits following brain injury. These deficits can include medical, physical, communicative, cognitive, psychological, and/or behavioral disorders requiring careful selection of the treatment setting most likely to properly dose treatment of the problems presented by any given individual.
So, why does the State of California operate under such simplistic guidelines? Is this the best we can do?
One solution may be to adopt other guidelines that have far better information to offer pertaining to brain injury. Two of these include the Colorado Medical Treatment Guidelines (2012) and the Official Disability Guidelines.
Brain injury can predispose the brain to neurodegenerative processes and may be implicated in a host of diseases such as chronic traumatic encephalopathy (CTE), Parkinson’s disease multiple scelerosis, amyotrophic lateral scelerosis, stroke, epilepsy, Alzheimer’s disease and others. The simplified explanations in this post allow us to consider whether we are monitoring and treating neuroinflammatory influences chronically and properly after brain injury.
So, we must consider whether an approach that addresses behaviorally accessible avenues such as diet, sleep, and exercise combined synergistically with endocrine, immune dietary and exercise interventions to quiet inflammatory processes in a previously injured brain has utility in accelerating recovery, furthering recovery, providing neuroprotection for residual, as of yet, uninjured cells, and/or preventing neurodegenerative processes to be accelerated over those of normal aging.