Monthly Archives: January 2015

Caregiver Burden And the Initial Injury Event

Families of brain injury survivors are often the unsung heroes of the injury experience.  They are the individuals who insisted the doctors not give up on their loved ones.   They are the individuals who spent the sleepless nights on uncomfortable hospital chairs and stressful days trying to hold a chaotic home life together.  They battled the insurance companies for hospital and rehabilitation coverage.  They support the survivor in countless ways during rehabilitation and then beyond the point when formal rehabilitation services conclude.  However, many family members and friends fail to adequately appreciate the burden that a caregiver is under.  Even some of the primary caregivers themselves may not fully recognize the difficulties they are experiencing.  The stress and problems due to caregiver burden can lead to those caregivers experiencing a decline in both physical and mental health.

When a person is injured, families often get a sudden call from the hospital warning them that they must come as quickly as possible because their loved one is hurt and may die.   It is important to appreciate this terrifying experience.  Life is instantaneously turned upside-down.  Family members run off to the hospital not knowing what to expect.  Often they come to an emergency room to find their loved one hooked up by a number of tubes and hoses to a variety of machines.  In the case of an accident, the loved one may well be horribly bruised and bleeding with broken limbs.  Doctors likely will come over to advise the family of the terrible news and to inform them of the potential severity of the injury, often relaying death as a possible consequence.  Family members are thrust into the position of caregivers required to make life-and-death decisions.  They may be asked to consent in their loved one’s place for complex surgeries such as a craniotomy (in which part of the survivor’s skull is removed to counter swelling and bleeding in the brain).  Even with these life-saving procedures, families are warned that their loved one may not survive.  This may then leave families forced to wait on pins and needles for days on end.  Their loved one may be in a coma for days, weeks or even longer.  During such a period, family members may rightfully worry whether their loved one will ever wake up at all.  The newly injured person may suffer setbacks such as seizures or infections such as MRSA, each of which bringing with it new risks and fears.  At every step family members are forced into the role of caregivers, being updated by doctors and attempting to make the best of often unpleasant situations.  In some cases, family members are the first to find their injured loved one following the brain injury or actually even had the misfortune of watching the injury as it happened.  In these cases there is the added terror of having to summon an ambulance while helplessly watching as a loved one suffers.  This can be not only an incredibly scary moment but also an incredibly lonely moment as the family member stands alone, staring at the clock and hoping the ambulance will arrive in time.

These injury events are often the start of the caregiver burden experience.  The caregivers undergo a physically and mentally exhausting experience and though their loved one may survive, the injury event experience often leaves a permanent emotional scar.  This is a traumatic event, similar in some ways to the trauma someone may experience watching a fellow soldier get shot in battle.  There are feelings of fear and helplessness as little is left to do but watch as a loved one fights to survive.  Caregivers may have nightmares regarding their loved one’s injury.  They often go throughout the day worrying that their loved one will suffer subsequent injury and decline or even worse, die.  In some cases, caregivers blame themselves for their loved one’s injuries.  They may tell themselves, “If only I hadn’t let her have that last drink, she would have never been in that accident” or “If only I’d made more of an effort to ensure that he’d eaten better, he would have never had this stroke”.  For some caregivers the date of the injury becomes an anniversary of a new life.  For others it will forever be known as the anniversary of a death of life as they knew it, no matter how much their loved one improves.

With this in mind, it is vital for caregivers to acknowledge the enormity of the injury event and to allow themselves to work on the resultant emotional experience.  Caregivers need to give themselves permission to reach out for help and support.  It is important for those in the caregivers’ lives to help support these caregivers and provide a safe space for them to share their experiences (of course only up to the level with which the caregivers are comfortable).  Often, rehabilitation therapists are the first to notice the caregiver burden and to offer to help caregivers with these abundant concerns.  In many cases, caregivers benefit from counseling and/or psychotherapy in efforts to work through their emotional experiences.  A well-defined medication regimen appropriately tailored to an individual’s needs can also aid substantially in attaining emotional balance.  Some family members may benefit from meeting with clergy so as to aid in their spiritual recovery from this experience.  Also, brain injury and/or stroke support groups can be very useful in managing the emotional impact of this experience.

I hope this post shed some light on the caregiver burden as it specifically relates to the initial injury event.  Feel free to comment below with any questions.

Learn about brain injury treatment services at the Transitional Learning Center: tlcrehab.org

TLC Success Story: Kody Fields

Kody Fields, a talented and athletic young man from North Texas, was involved in a terrible vehicle collision in 2008.  Through his hard work and with the help of the Transitional Learning Center staff, Kody has been able to attend college.  Kody is truly an inspiration to others.  TLC is proud to have helped him in his journey.  Click on the link below to read his story.

http://www.kcbd.com/story/24776214/spc-student-overcomes-trauma-to-attend-college

Learn about brain injury treatment services at the Transitional Learning Center: tlcrehab.org

 

What is Music Therapy?

By Amanda Gilbert MT-BC, CBIS Staff Music Therapist at the Transitional Learning Center

Many people know of someone in their lives who has received music therapy services, and many have encountered videos or some like representation documenting music therapy methods and techniques. Music therapists can be found working with infants, children, adolescents, adults and elderly persons and may be called upon to assist those facing neurological conditions, specific psychiatric needs, developmental or learning disabilities, aging-related conditions, acute or chronic pain, the consequences of struggles with substance abuse, or the effects of more typical physical disabilities. Despite its rapid growth and wide application in the healthcare field, one of the most common questions any music therapist still receives is “What is music therapy?” The American Music Therapy Association tells us:

 

“Music therapy is the clinical and evidence-based use of music interventions to accomplish goals within a therapeutic relationship by a credentialed professional who has completed an approved music therapy program. Music therapy interventions can be designed to promote wellness, manage stress, alleviate pain, express feelings, enhance memory, improve communication and promote physical rehabilitation (American Music Therapy Association, 2013).”

 

So, what then does THAT mean? Let’s break this definition down:

 

“Music therapy is the clinical and evidence-based use of music…”

 

During the last 30 years, brain imaging has improved to the extent that it is now capable of showing us exactly what is happening when we are involved in listening to, creating, playing, or even reading music. These studies have found that the reactions generated in areas of the brain activated when we are engaged in these activities are not unique to musical stimuli, and that these areas therefore are not devoted exclusively to processing music-related information. They are used for other functions, too. When we complete musical tasks, we are helping our brain practice skills that are inevitably carried over into more classically functional areas (like moving, talking, and thinking). Research has shown that music participation drives plasticity in the human brain, which makes its auditory, learning, and motor areas interact more efficiently. Music therapists are charged with keeping up to date with current evidence supporting the clinical use of music and of incorporating the sources of that evidence into their practices.

 

“…use of musical interventions…”

 

During a typical music therapy session, you may see patients singing, drumming, listening to music, learning new instruments, or writing songs. There is no need for a person to have had a history of being involved in music in order for that person to benefit from MT. The music therapist will take all of a patient’s relevant strengths, barriers, and goals into consideration when designing these interventions.

 

“…to accomplish goals…”

 

While music therapy definitely can be fun, there is always an underlying goal to any activity. Music therapists create music interventions so as to address goals that can translate into beneficial changes seen in everyday life. They communicate with  patients and their loved ones as well as with therapists from other disciplines currently treating those patients in order to determine which skills are most important to address, and to assign priority to the addressing of each one. Obtainable and measurable goals are then created with objectives acting as stepping stones to each subsequent accomplishment.

 

“…within a therapeutic relationship by a credentialed professional who has completed an approved music therapy program.”

 

Board certified music therapists, holding the credential MT-BC, are qualified to practice anywhere in the United States. They have completed an approved college curricula (including an internship) and have passed the national examination offered by the Certification Board for Music Therapists. Therapists can complete additional training in order to earn specializations in other areas including but not limited to Neurologic Music Therapy (NMT), Neonatal Intensive Care (NICU), Bonny Method of Guided Imagery (GIM), and Nordoff-Robbins Music Therapy (NRMT). At the Transitional Learning Center, music therapy treatment is provided from an NMT-based perspective, focusing on the relationship between music and the brain.


“Music therapy interventions can be designed to promote wellness, manage stress, alleviate pain, express feelings, enhance memory, improve communication and promote physical rehabilitation.”

 

Music therapists address goals designed to promote a healthy lifestyle, to decrease pain, to provide a much-needed emotional outlet, to assist in memory, to improve verbal and nonverbal communication, and to augment rehabilitation of physical ailments in specific muscle groups. Neurologic Music Therapists address motor, cognitive, and sensory goals engaged in efforts to combat neurological disease. These therapists are trained specifically in the science of music perception and production and in the effects of same on the non-musical brain. Because music engages multiple areas on both sides of our brains, NMTs can assist those who have difficulty with speech, walking, and in the moving of their hands or arms.  This fact also leaves NMTs in an exceptional position to aid individuals in need when working to improve their attention, speed of processing, memory, and other like thinking skills.

Music therapy is a unique, evidence-based medium through which hundreds of thousands of people accomplish incredible goals each year. While the field is in its relative infancy, the future of MT looks bright as more individuals and facilities begin to learn the benefits it can provide.

For more information about music therapy or to find a music therapist, please look to the following websites:

 

American Music Therapy Association

http://www.musictherapy.org

 

The Certification Board for Music Therapists

http://www.cbmt.org

 

The Center for Biomedical Research in Music

cbrm.colostate.edu

Learn about brain injury treatment services at the Transitional Learning Center: tlcrehab.org

 

The Role of Support Groups

Going through life with a brain injury can be a remarkably difficult experience for a brain injury survivor.  Life has changed, often in many dramatic ways.  Sometimes utilizing the most basic of skills, such as using the restroom or remembering to turn off an oven, can present the most complex of challenges.  Life is often just as hard (and in some aspects can be even harder) for the survivor’s family.  Everything has changed for them, too.  Family members often find that new roles are now required of them and that new stressors now confront them at every turn.  A wife may now find herself serving as her husband’s primary caregiver.  A brother may now necessarily be conscripted as his sibling’s chauffeur to constant doctor’s appointments.  On top of all this, there is so much to learn in a field with which both survivors and family members almost always have little to no previous familiarity.  This can make for an incredibly lonely experience.  Survivors and family members may ask themselves, “Is there anyone else in the world who knows what this feels like?”  While the brain injury survivor is a patient in an inpatient rehabilitation program (a very common experience in post-injury life), the survivor can often rely upon the camaraderie of fellow patients.  Family members may become friendly with the family members of other survivors and chat on a regular basis.  Both survivors and their families will have regular contact with staff who are able to provide support and knowledge.  However once the survivor discharges from that inpatient facility, he or she suddenly has little to no contact with other brain injury survivors.  Families lose contact with each other and no longer have available as an option just popping in to a therapist’s office for a quick question.  This is when the brain injury experience can be its most lonely.

 
Support groups can help fill this gap.  Support groups are groups of individuals with similar experiences that meet on a regular basis to discuss those experiences.  Individuals may offer suggestions and advice or just provide a shoulder to lean on.  Support groups exist for a wide selection of health-related issues ranging from living with cancer and diabetes to coping with grief, struggling with substance abuse, and of course, rebuilding one’s life in the aftermath of a brain injury.

 
There are two primary types of support groups that are most relevant to brain injury survivors, namely stroke support groups and brain injury support groups.  Stroke groups tend to be more common than brain injury support groups, though in most larger population areas one will be able to find a brain injury support group in addition to stroke support groups.  Among stroke support groups, there is a small subset that are specific to aneurysms (though survivors of aneurysms and their families are of course welcomed in a general stroke support group).  Support groups are often run out of hospitals, rehabilitation facilities, community centers and houses of worship.  If a group’s meetings take place in a hospital, usually the survivor does not have to be a patient (past or present) of that particular hospital in order to attend.  In addition to the aforementioned support groups, there are support groups designed to address certain specific symptoms of brain injuries.  For example, there are aphasia support groups, apraxia support groups and memory support groups.

 
Each support group tends to have its own individual program and essential dynamic.  Some provide more educational content while others tend to offer more of an emotional/social support program.  Some are survivor oriented, others family oriented and still others are oriented to both survivors and their families.  If you do not feel suitably comfortable at one group, you can always attend another group.  Also, there are available some online support groups necessarily better suited to those who have difficulty leaving their homes.  Some survivors and families will even create their own groups when confronted by a lack of groups tailored to their specific needs in their vicinity.

 
Below are a few links that may aid in finding a support group:

 

For brain injury support groups, click on your state affiliate of the Brain Injury Association of America and scroll to the Support Groups section:

http://www.biausa.org/state-affiliates.htm

Stroke support groups:

http://www.strokeassociation.org/STROKEORG/strokegroup/public/zipFinder.jsp

http://www.stroke.org/stroke-resources/stroke-support-groups

In addition, the American Stroke Association has a family support phone program called the Stroke Family Warmline.  The Warmline phone number is 1-888-478-7653.

Aneurysm support groups:

http://www.bafound.org/support

Learn about brain injury treatment services at the Transitional Learning Center: tlcrehab.org

What is Left Neglect?

Left neglect, also known as unilateral neglect or hemispatial neglect, is one of the oddest symptoms of a brain injury.  It can also be one of the most troublesome symptoms.  Left neglect is a term describing a deficit in awareness that occurs following an injury to the right side of the brain.  Due to the injury, the brain has difficulty paying attention to items falling into the left hemisphere of an individual’s awareness.  This generally sees its clearest expression in difficulties with visually noticing items  on the left side.  For instance, a survivor with left neglect may bump into frames of doors on his or her left side or routinely miss eating food sitting on the left side of a plate.  It often appears as if he or she is blind to items on the left, but this is not a true vision issue.  It is an attention issue.  The brain is not attending to information generated from the individual’s left side.  The survivor can have perfect visual skills, but the message that the survivor’s brain is providing is that the left side of his or her world for all intents and purposes does not exist.

Left neglect does not only involve visual components, but can also manifest as a lack of attention to sound or touch on the left-hand side.  For example, survivors may report that they cannot hear as well from their left ears despite audiological testing demonstrating perfect hearing.  Survivors may fail to notice left hands getting stuck in the wheels of their wheelchairs, potentially injuring those hands.  In the most severe of cases, survivors may not recognize their own left arms or legs as being parts of their bodies.  They may find cause to ask something like, “Whose arm is this in my bed?”  Fine variations in damage suffered to slightly different parts of the right side of the brain lead to notably distinct manifestations of left neglect, making each survivor’s experiences differ in some regard to that of the next.

Left neglect difficulties can cause many serious safety problems.  For instance, a survivor may not notice a boiling pot of water sitting upon the stove on his or her left side and bump into that pot’s handle.  This could then cause that pot to spill and lead to serious burns.  Similarly, a survivor may not sufficiently attend to cars on his or her left and attempt to cross a busy street at an inopportune moment, risking being hit by a car.  It is not uncommon for survivors with left neglect to have ever-present bruising on the left side of their bodies due to bumping into items.  To make the issue even more complex, many survivors with left neglect may also have issues with impulse control or now be much more easily distracted.  This then substantially compounds the danger and difficulties confronted by survivors contending with left neglect.  Some survivors may also be outright missing vision on the left side (a condition known as a field cut), adding an actual visual problem on top of these attentional issues.  Even when survivors are equipped with a complete awareness of their left neglect, in the absence of treatment the difficulties and errors unfortunately will still persist.  Remember, the brain is unconsciously telling the survivors to ignore the left side.  The neglect is not an intentional act by the survivors.  Since the brain is creating this false message, the survivors feel like everything is normal and that they are attending to the left just as well as they would have prior to the injury.
Though left neglect is most certainly an issue of attention, it cannot be treated with stimulant medications like Ritalin (which can generally be relied upon to improve more typical attention deficits).  The survivor must engage in specific therapies and learn compensatory techniques to help make more manageable these attentional deficits.  Even with treatment, left neglect strategies must be practiced and carried over into life at home in order to avoid seeing a regression in a survivor’s performance.

Left neglect can affect a survivor’s ability to engage in activities requiring both tabletop scanning and environmental scanning.  Examples of left neglect effects on tabletop tasks can be observed when survivors with left neglect miss words on the left side of a page or overlook numbers on the left side of a bill.  Some examples of left neglect effects as related to environmental scanning would be survivors missing potholes on the left side of a street or failure to locate a car parked on the left side of a parking lot.

There are a number of methods to help survivors compensate for left neglect.  One such method is known as prism adaptation.  This is a method used by rehabilitation professionals in which patients engage in an activity while wearing strong prism glasses which pull visual items from the left into a more central attentional domain.  This visual change forces the patients to compensate for the effects of the prism in order to accurately complete the activity.  After the activity, some patients with left neglect notice an aftereffect in which the brain will continue to pull visual items from the left more into their attention even when the glasses are no longer being worn.

Limb activation therapy is another method used by professionals to aid with left neglect.  The focus in this method is to get the patient to actively use his or her left limbs in the space surrounding the left side of his or her body in order to engage the brain’s spatial and motor maps for those domains.  This has been found to be very helpful to patients, but unfortunately substantial difficulties are all too often encountered.  As it’s common for survivors contending with left neglect to also have difficulty moving anything on the left side of their bodies (such targeted paralysis or semi-paralysis is itself one of the most common symptoms of a stroke or brain injury), the limits inherent in attempting to apply such a method become apparent.  However, some research shows that even passive movement of the left side can help improve issues stemming from left neglect.

Working at honing scanning techniques is one of the most frequently utilized methods in treating patients with left neglect.  Patients are taught by therapists methods by which to ensure that they have scanned the entire visual field.  To do so, patients are often instructed to pretend as if the head is a lighthouse.  Patients will be directed to turn their heads all of the way from one side to the other while scanning an environment just as a lighthouse will turn it’s light fully from one side to the other in order to effectively scan the seas.  As a general rule of thumb, patients are taught that if they are scanning their environments and they have not seen their left shoulders, then they probably have not scanned as far to the left as needed.  When involved in tabletop activities, patients are taught to scan to their left hands or left elbows.  Practicing this type of scanning can be done in multiple ways.  Patients may be asked to scan for and then identify letters or lights spread out upon a board or asked to scan and then find features in a parking lot.  Often, therapists teach patients to highlight the left side of a page or place a bright bookmark next to the left side of a page so as to institute a cue to help recognize when they have scanned all the way to the left.  If the patients have not seen the highlighted area or bookmark, then they know they have not made it as far to the left as they should.  Patients are taught to always start their scanning from the left and then move slowly to the right.  Patients with left neglect are less likely to miss items if they begin the scanning process on the left and proceed to the right than if they do the reverse.
Therapists may also deliberately place items on the left side of patients in order to force those patients to move, scan and utilize their left sides.  A glass of water with dinner may be placed to the left of a plate.  The therapist may pass a pen to the patient’s left hand.  All of these seemingly small acts contribute to improving scanning to the left and to using the left side of the body in the left hemisphere of the space occupied by the patient.  The ultimate goal is for robust scanning and increased use of the left side to become part of daily habit in the patients’ lives.  Therapists also may use other cues to help a patient better attend to the left.  For instance, they may put bells on a patient’s left hand so that he or she will hear the bells every time that left hand falls from the wheelchair (and then know to pick the hand back up).

Scanning skills can often be easily taught to family and friends, which can be of great help to the survivor in extending use of these techniques beyond an environment explicitly dedicated to therapy.  Family and friends can also help by identifying situations in which the survivor may be having a difficulty related to left neglect of which he or she is not aware.  All involved can then apply this knowledge so as to aid in identifying how left neglect could impact future situations.  For example, a family member may help a survivor in an airport recognize that he or she has knocked over a fellow traveler’s bag and then also help the survivor prepare to enter the plane without bumping into the left aisle seats.  This manner of aided behavior reinforced over time will do much to improve that survivor’s solo interactions with his or her world.

Hopefully this post has provided an amount of useful guidance on the road to a wider, more complete understanding of left neglect.  Feel free to leave comments below with any questions!

Learn about brain injury treatment services at the Transitional Learning Center!  Visit us at: tlcrehab.org