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Caregiver Burden Part 2: Initial Stages of Recovery

This is the second part of a series on caregiver burden.  As mentioned in the first part, caregivers are in the trenches of the recovery battle with the brain injury survivors from the very beginning of the injury experience.  They take on a tremendous amount of tasks, emotions and responsibilities which can lead to significant levels of stress.  This stress can negatively impact the health of caregivers.  It is vital for survivors, caregivers and the community around them to understand caregiver burden.  This post will focus on some of the caregiver burden issues involved the initial stages of recovery.

 

Following the patient’s survival of his or her injury, the patient enters the initial stages of recovery.  When a patient first wakes from a coma, it is not like the movies where the hero simply wakes up as if in a deep sleep and resumes regular activities.  For most moderate/severe brain injury survivors, they enter a stage called Post Traumatic Amnesia, often referred to as PTA.  During PTA, the survivor may be moving or talking but there are some key features that make it different than later stages of recovery.  First, as per the name, survivors in PTA have extremely poor memory skills.  A friend can have a conversation with a survivor with PTA, walk out of the room for fifteen minutes and when the friend returns the survivor will have no memory of the conversation or even that the friend had visited.  Second, survivors in PTA often have temporary changes in personality.  They are often more impulsive and aggressive than it typical for them.  In fact, they may need medications to help calm them.  They may have hallucinations or delusions.  Often these delusions take on a paranoid tone such as believing that nurses are trying to kill them or that family members are trying to steal their money.  Third, they generally have poor awareness of deficits and tend to act in an unsafe manner.  Taken in whole, brain injury survivors in PTA can have moments in which they are quite abusive to loved ones, even though they do not truly intend to be abusive.  This can be very tough on the caregivers who just went through the trauma of nearly losing their loved ones and who only want to support their loved ones’ recoveries.  Moreover, due to poor awareness, the survivors may reason with, beg and plead with the caregivers to get them out of the hospital or rehabilitation facility even though they obviously need treatment.  It is very emotionally straining on caregivers to constantly have to tell the survivors that they cannot simply bring them home and that they need to remain in treatment.

 

As the survivor improves and emerges out of PTA, these early stages of recovery can be exciting as caregivers see day to day improvements.  However, this is also the time when caregivers get their first reality checks that this is going to be a long process.  During the initial crisis of the injury event, the focus of the families is just on survival and families do not have an opportunity to ponder the long-term effects of the injury.  As families come out of “survival mode” and begin to watch the slow steps of recovery, the reality sets in that the process of recovery is more like a marathon than a sprint.  Part of the misunderstanding is that most peoples’ familiarity with injuries tend to be that of a broken bone or similar injury.  The formula tends to be relatively straight-forward: the doctor operates on the injured body part, the patient takes some time to heal that body part and in a brief duration of time everything is better.  Brain injuries often do not work that way, particularly moderate to severe brain injuries.  A surgery cannot undo the brain damage from a stroke or car accident.  The brain heals at a slower rate and active rehabilitation is necessary.  In this initial stage, caregivers often begin to worry about how long will it take to recover and to what extent the survivor can recover.  They begin to worry about the deficits will effect things such as relationships and work.  There is often a general fear of re-injury that lasts throughout the recovery process and beyond.  The day to day improvements bring hope but the slow rate of recovery brings doubt.  At the same time they are experiencing their own doubts, caregivers often want to continue to give hope to the survivor that the survivor will have an excellent recovery.

 

During this initial stage of recovery, families also start to feel the first stress of financial changes due to the injury.  Hospital bills begin to come in and at the same time income may drop due to the survivor being unable to work.  Caregivers, too, have often loss significant time at work as they monitor their loved one.  Many hospitals charge for parking and caregivers may spend hundreds of dollars in a single month just to spend time with their loved ones.  Equipment that is not covered by insurance, presuming that the survivor has insurance, must be paid for.  Often this is also the first time for stressful battles with insurance companies over identification and rehabilitation opportunities for their loved ones.

 

Moreover, friends and family members tend to loyally visit the survivor and support the caregiver during the  injury event but as time goes on, the phone calls and visits tend to decline and the caregiver may feel more alone.  Friends and family members can return to their injury lives but the caregiver does not such a luxury.

 

There are a few suggestions that may help caregivers during these initial stages of recovery.  This is often a good time for caregivers to begin their  own psychotherapy/counseling.  Caregivers need to remember that they cannot do their best to support their loved ones if they do not allow themselves to be helped.  The stress of caregiver burden is tremendous and often professional support is needed.  For some caregivers, they may benefit from a medication regimen such as taking anti-depressants.  Caregivers often benefit from support groups with survivors and caregivers who can help guide them through the recovery process (See the following blog post for more information https://tlcrehab.wordpress.com/2015/01/16/the-role-of-support-groups/) .  This is also a time when brain injury education can help the caregiver understand the situation.  Caregivers should ask therapists and doctors to sit with them and explain the details of the survivor’s brain injury.  They should also ask for books, websites and pamphlets to help them learn more about injury.  The Brain Injury Association of America www.biausa.org , American Stroke Association www.strokeassociation.org, Brainline www.brainline.org and the Transitional Learning Center blog tlcrehab.wordpress.com are good options to start the learning process.

 

Caregivers often need to remind others that they still support even though the survivor is no longer in a near death situation.  Family and community members need to take extra effort to continue to call or visit.  A simple letter or email can help the caregiver feel less alone and supported.  Family or community member can be tremendously helpful by giving the caregiver a break by staying with the patient as the caregiver gets some rest or takes care of their own needs.  Even an hour break just for a caregiver to get his or her hair cut is a much appreciated relief.  They may also organize rallies or fundraisers to help support the emotional and financial needs of the survivor and caregiver.  These rallies and fundraisers give a tremendous lift to both the survivor and the caregiver.

 

These are some of the pressing issues that contribute to caregiver burden during the initial healing stages and ways to help mitigate these issues.  Feel free to comment below with ideas or suggestions.

 

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

New Big 12 Concussion Policy

The Big 12 Conference, one of the most important conferences in Division I college athletics, has instituted a new concussion policy.  The Big 12 Conference includes athletic powers such as the University of Texas, the University of Oklahoma and Baylor University.  There are two pieces to the policy which I find particularly important.  First, the new policy gives medical staff the sole and unchallengeable authority to decide if a player is able to return to play while not allowing the team’s coaches to have any form of employment authority over the medical staff.  This allows medical staff to make their important medical decisions without fear of retribution from the coaches.  Second, it states that any player diagnosed with a concussion cannot return to play or practice that day.  This will hopefully eliminate the previous practice of returning concussed players back into a game and risk a more serious second brain injury.  Remember, concussion is just another word for brain injury.  This is truly a step in the right direction for the reduction of and improved treatment of brain injuries.  The link below will take you to the Big 12 press release on their new concussion policy:

http://www.big12sports.com/ViewArticle.dbml?DB_OEM_ID=10410&ATCLID=209895746

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

 

Valentine’s Day

Valentine’s Day is coming in just a few days so this is a good time to talk about a few ways that brain injuries may affect Valentine’s Day for injury survivors and ways to make it more successful.

 

For survivors with speech deficits (often known as aphasia), Valentine’s Day can be stressful.  On Valentine’s Day people say “I love you” to loved ones and survivors with aphasia may not be able to say this phrase.  They know what they want to say but cannot get the words out.  Some survivors may feel let down that they are not able to express this heartfelt statement.  Speech therapists often work with survivors with aphasia to say important phrases like “I love you” and it is generally a good idea to practice these useful phrases on a daily basis.  Many survivors with aphasia can say simple phrases if someone starts the phrase with them or says it with them.  For instance, the survivor may be able to say “I love you” if his or her loved one helps by saying “I lo….”.  Even if it took some help to get the words out, most brain injury survivors feel good about the accomplishment of saying the correct phrase.  Even if the survivor cannot get out the words, if he or she is clearly trying to express his or her love, loved ones should accept the emotion behind the attempt.  In the end, it is truly the emotion that counts.

 

Another big change in Valentine’s Day may be how the holiday is celebrated.  For instance, many survivors are accustomed to taking loved ones to big meals, events or celebrations for Valentine’s Day.  They may be used to purchasing huge bouquets, pricy wines or expensive chocolates.  After a brain injury, survivors and their families often have a considerable change in income and large medical debts.  Some survivors may feel guilty that their injury is the cause of this change in holiday celebrations.  Many survivors that are hospital-bound may feel like they have ruined the holiday with their injury while for their family members, the joy of simply being able to celebrate another holiday with the survivor after the survivor’s near death experience is greater than any gift that can be purchased.  There are a few ways to deal with these issues.  Survivors may need to be reminded that they did not ask for the brain injury to happen so they should not blame themselves inappropriately.  Instead of purchasing items, they may be encouraged to make a gift or a card for their loved ones.  Families often appreciate hand-made items at least as much, if not more than, a purchased item.  For survivors that are purchasing items, loved ones may need to reassure the survivor that they appreciate the small purchased items just as much as a larger item.  In some cases, such as if a survivor is a patient in an inpatient rehabilitation facility, he or she may need friends or other family members to purchase an item on the survivor’s behalf.  Most importantly, loved ones may need to help the survivor focus on what everyone values the most, the love that they can celebrate together that was nearly permanently lost due to the injury.

 

Sometimes there are dietary issues that may come up with Valentine’s Day.  Valentine’s Day gifts tend to involve copious amounts of chocolate and sweets.  For survivors with diabetes, eating large amounts of chocolate and sweets can induce serious health complications.  Loved ones may want to give non-food items such as flowers or gifts to diabetic patients.  Also, people tend to go out to eat for Valentine’s Day meals.  Any recommendations by speech therapists such as thickened drinks or safe swallowing techniques need to be carried out in the restaurants just as they would at a home or at a rehabilitation facility.  It may not seem romantic to thicken a drink during a fine dinner but there is certainly nothing romantic about having a swallowing issue that leads to a serious problem such as aspiration pneumonia.

 

As mentioned above, many people like to go out for Valentine’s Day.  This may include going to restaurants, movies or plays.  As Valentine’s Day tends to be a busy day for these venues, there are a few issues that may need to be considered.  If a survivor has physical mobility issues, survivors and loved ones need to pick the venues that are the most accessible.  Though all public building must be accessible by law, some venues are simply better than others.  For instance, which restaurant has the widest space between tables allowing a wheelchair to easily pass through?  Is there a separate accessible entrance that a survivor can use to make it easier to enter the venue?  As an example, many movie theaters have separate entrances for those with mobility deficits to make it easier to enter and leave the movie and avoid the normal crowd of movie-goers.  If a survivor would do best with a particular seating, such as being closer to the door to limit the distance he or she has to walk, venues will help with this as long as they are contacted in advance.  A simple phone call to a restaurant can often guarantee the most appropriate seating will be reserved for the survivor and his or her loved ones.  Survivors and loved ones may also want to consider going at off-peak hours.  This can not only help those with mobility issues but is usually best for survivors that have a tendency toward becoming agitated when in large crowds.  Some survivors may do best with a home-based or facility-based celebration rather than going out in the community if they have significant difficulty with mobility or agitation.  Others may do best by celebrating Valentine’s Day a day early or late so as to avoid the holiday rush and stress.

 

An oft-ignored issue is that many brain injury survivors simply do not feel attractive after their injury.  They may look at themselves and see body parts that do not move, aid devices, scars or other factors that make themselves feel ugly.  Usually, loved ones still feel  strong love and connection to the survivors.  Sometimes, the injury even increases these feelings.  It is vital for loved ones to express their feelings to the survivors and let the survivors know how much they love them.   Survivors may need more encouragement and reassurance of their attractiveness than in the past.  Further, survivors should be encouraged to dress as they normally would, or the best they can given their needs.  For instance, if a survivor normally wears make-up, she should be encouraged to wear make-up.  We tend to feel better when look better, even when we do not have an injury.  When we see ourselves in the mirror looking our best, we are more likely to feel our best.

 

I hope this post help explain a few of the issues that come up around Valentine’s Day and some ways of maximizing the holiday experience.

 

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

 

 

Caregiver Burden Part 1: The 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.  This series will focus on the various aspects of caregiver burden.

 
The first aspect of caregiver burden we will explore is that which stems from the initial injury event.  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 first post in a series on caregiver burden 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 deficit that occurs following an injury to the right side of the brain.  Due to the injury, the brain has difficulty paying attention to items on the left side.  This is generally most apparent in difficulties 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 miss eating food on the left side of his or her 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 on the left.  The survivor can have perfect visual skills but the message the survivor’s brain is providing is that the left side of the world 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 instance, survivors may report that they cannot hear as well from their left ear despite audiological testing demonstrating perfect hearing.  Survivors may not notice that their left hand is stuck in the wheel of their wheelchair, potentially injuring their hands.  In the most severe of cases, survivors may not recognize their own left arms or legs as being part of their body.  They may ask, “Whose arm is in my bed?”  Damage to slightly different parts of the right side of the brain leads to different manifestations of left neglect, making each survivor’s experiences different from the next survivor.

Left neglect can affect the survivor with both tabletop and environmental scanning.  Examples of left neglect effects on tabletop tasks are when survivors with left neglect miss words on the left side of the page or miss numbers on the left side of a bill.  Examples of left neglect effects on environmental scanning are when survivors miss potholes on the left side of the street or cannot find a car parked on the left side of the parking lot.

Left neglect difficulties can cause many serious safety problems.  For instance, a survivor may not notice a boiling pot of water on the stove on his or her left side and bump into the pot handle, leading to the pot to fall and causing serious burns.  Similarly, a survivor may not attend to cars on his or her left and attempt to cross a busy street, risking being hit by a car.  It is not uncommon for survivors with left neglect to have bruises on their left side of their body due to bumping into items.  To make the issue more complex, many survivors with left neglect may be impulsive or easily distracted, which compounds the danger and difficulties of left neglect.  Some also may be missing vision on their left side, known as a field cut, adding the visual problem to the attentional problem.  Even when survivors are able to state that they know about their left neglect, without treatment the difficulties and errors remain.  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 prior to the injury.

Though left neglect is an attention issue, it cannot be treated with stimulant medications like Ritalin, which can improve more typical attention deficits.  The survivor must engage in specific therapies and learn compensation techniques for these attentional deficits.  Even with treatment, left neglect strategies must be practiced and carried over at home or survivors tend to regress in their performance.

There are a number of methods to help survivors compensate for left neglect.  One method is 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 affects of the prism to accurately do the activity.  After the activity, some patients with left neglect notice an aftereffect in which their brain continues to pull visual items from the left more into their attention even when not wearing the glasses.

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 the limbs on the left side of the body in space on the left to engage the brain’s spatial and motor maps for these domains.  This has also been found to help patients but can run into difficulty as many patients with left neglect also have difficulties with moving the left side of their bodies.  However, some research shows that even passive movement of the left side can help improve neglect.

Scanning techniques are the most common methods used to treat patients with left neglect.  Patients are taught by therapists methods to ensure that they have scanned their entire visual field.  To do so, patients are often instructed to pretend like their head is a lighthouse and that they need to turn their head all of the way from one side to the other while scanning an environment just as a lighthouse will turn it’s light from one side to another while scanning the seas.  As a general rule of thumb, patients are taught that if they are scanning their environment and they have not seen their left shoulder then they probably have not scanned all the way to the left.  On tabletop activities, patients are taught to scan to their left hand or left elbow.  Practicing this type of scanning is done in multiple ways.  Patients may be asked to scan for letters or lights on a board or asked to scan and find features in a parking lot.  Often, therapists teach the patients to highlight the left side of a page or place a bright bookmark next to the left side of the page as a cue to recognize if they have scanned all the way to the left.  If the patients have not seen the highlighted area or bookmark, then they have not made it all of the way to the left.  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 start scanning on the left than if they start on the right.

Therapists may also deliberately place items on the left side to force the patients to move, scan and utilize their left side.  A glass of water with dinner may be placed to the left of the plate.  The therapist may pass a pen to the patient’s left hand.  All of these seemingly small acts attempt to improve scanning to the elft and using the left side of the body in the left sided space.  The ultimate goal is for scanning and use of the left side to become a 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 he or she will hear the bells every time their left hand falls from the wheelchair and will know to pick his or her left hand up.

Scanning skills can often be easily taught to family and friends, which helps the survivor to use these techniques outside of therapy.  Family and friends can also help by identifying situations in which the survivor is having a left neglect-related difficulty that he or she is not aware of and help identify how left neglect can impact future situations.  For example, a family member may help a survivor in an airport recognize that he or she knocked over a fellow traveler’s bag and help the survivor prepare to enter the plane without running into the left aisle seats.

Hopefully this will help you understand left neglect.  Feel free to leave comments below with any questions!

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

 

 

New Year’s Disorientation

As 2014 comes to a close and 2015 is upon us, some brain injury survivors may find themselves facing greater than normal levels of disorientation.  Often brain injury survivors, particularly those with memory deficits or in the earlier stages of recovery, will have trouble keeping track of basic orientation information such as the month or the day of the week.  The change in year represents yet one more piece of new information they have to worry about remembering.  Survivors may seem confused or express doubt when told of the change in year.  Some survivors may even argue that therapists, staff and family are giving them false information.

 
Many patients with orientation difficulties can get stuck on the last date or location they remember and have trouble incorporating new information.  For example, a survivor may last remember living in Dallas and struggle with integrating into his or her life knowledge of moving in post-injury with his or her parents in Houston.  This same issue can occur with a change in year.  As the survivor last remembers the year being 2014, it takes considerable effort to make the switch to recognizing that it’s now 2015 (and to making realization of that switch stick).  To put it in perspective, people often temporarily forget the correct year during the first few days of January and will then write the wrong year on checks.  But imagine if instead of being stuck on the wrong year for a few moments, you continually find yourself stuck on the wrong year for weeks upon weeks.  This is what brain injury survivors with orientation deficits may experience when confronted by a change of year.

 
Brain injury survivors can be helped by keeping relevant orientation information presented in many easily accessible locations.  Families and survivors may want to place more calendars around the home.  If a survivor has considerable problems with disorientation, he or she will likely do best with a one page per day calendar, one that displays on each page the day, date and year.  This type of calendar can generally be found at teller stations in banks in order to help ensure that customers write the correct date on checks.  This is in contrast to the month at a glance calendar, in which the entire month is shown on a single page.  The date can also be written on a dry erase calendar in a bedroom or on a refrigerator so that the survivor can easily see the new year.

 
Families can also make extra effort to insert the correct year into daily conversation.  This can be done simply by saying more often than one might otherwise things like “Wow, 2015 has really started off well for us” or “I’m glad that 2015 has rolled around as last year was quite difficult.”  The more that a survivor is exposed to the correct information, the more quickly and permanently he or she will learn this new information.

 
Lastly, please make sure to dispose of old calendars and similar items displaying the old year as quickly as possible.  Some brain injury survivors will become confused or distressed when confronted by both an old calendar and a new calendar.  This can cause a temporary (and entirely avoidable) setback in efforts to properly align orientation.

 

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

 

Holiday Adjustments-Part 4: Drinking

This is part 4 of a series on holiday adjustments.  As mentioned in the previous blog posts in this series,  deficits suffered in the wake of a brain injury may impact brain injury survivors’ ability to participate in holiday celebrations to the degree that they had in previous years so adjustments may need to be made in order to provide a greater likelihood of those survivors enjoying a successful holiday.  Part 4 will be focusing on issues related to drinking alcohol during holiday celebrations.

 
Alcohol consumption is associated with several holidays.  A champagne toast is often at the center of New Year’s Eve celebrations.  Eggnog with an alcohol such as rum or brandy added is featured at many Christmas parties.  However, alcohol can be highly problematic for a brain injury survivor.  Anyone who has suffered a brain injury should always consult with a physician prior to drinking alcohol.

 
There are a number of reasons why a brain injury survivor should avoid alcohol absent a physician’s approval.  First, for many survivors alcohol played an integral role in the circumstance that led to the survivor sustaining a brain injury in the first place.  For instance, if a survivor suffered a motorcycle accident because he or she was driving drunk home from a bar, clearly he or she faced difficulty managing alcohol safely prior to the injury.  There may be any number of issues underlying such a problem that need to be addressed with a substance abuse counselor, a psychiatrist or a psychotherapist.  Suffering a brain injury does nothing to remove or address a pre-existing problem with alcohol or life issues that may have set the stage for the injury.  Far too often a brain injury survivor will return in his or her post-injury life to old habits with regards to alcohol and consequently suffer yet another injury.

 
Second, alcohol chemically alters functioning in certain parts of the brain responsible for controlling skills with which survivors often already face substantial struggles.  For instance, alcohol depresses functionality in the prefrontal cortex, the part of the brain involved in decision-making and planning.  It also affects the cerebellum, which coordinates muscle movements for skills like walking.  If you think of a stereotypical drunk individual, the image that usually comes to mind is that of a person who has trouble walking, talking, coordinating body parts and effectively remembering  activities in which they are engaged.  In many cases, these are precisely the areas that the survivor is working to improve following his or her injury.  Alcohol is ostensibly a voluntarily induced temporary chemical brain injury and the last thing a brain injury survivor needs is that voluntary chemical brain injury on top of the current brain injury which was most certainly not chosen.

 
Third, alcohol interacts poorly with medication.  One compelling illustration of this dynamic can be found in brain injury survivors who take Dilantin (Generic name: Phenytoin) to prevent post-injury seizures.  Alcohol can change Dilantin levels in the blood, which then leads to an  increased risk of seizures.  Other brain injury survivors, particularly stroke survivors, may take the blood thinner Coumadin (Generic name: Warfarin).  Alcohol can magnify the effect of Coumadin, which then leaves those survivors at risk of excessive bleeding.  Anti-anxiety medications such as Ativan (Generic name: Lorazepam) and Xanax (Generic name: Alprazolam) may have interaction effects with alcohol that can range from increased dizziness to serious respiratory problems.  These are just a few of the many medications that when mixed with alcohol can threaten terribly dangerous consequences.  The National Institute of Alcohol Abuse and Alcoholism has a more complete list of medications and the negative effects of mixing those medications with alcohol:

 
http://pubs.niaaa.nih.gov/publications/Medicine/medicine.htm

 
Fourth, alcohol often affects the survivor far more strongly post-injury than experiences prior to the injury would tend to indicate.  As example, a patient at TLC once tried a beer while with his family when out on pass.  He reported to staff that he had not even finished drinking enough beer to empty the neck of the bottle before feeling potent symptoms of inebriation.  This scared him so much that he handed the bottle back to his family and swore off drinking then and there.

 
Now that the risks associated with drinking alcohol after a brain injury have been made more clear, here are a few suggestions as to how survivors and their families can make maintaining sobriety easier during the holidays.  First, survivors, families and friends can simply have a party without alcohol.  If no one is drinking alcohol because there is none available, then there is obviously no risk that the survivor will drink.  Holiday celebrations are ultimately about spending valued time together and celebrating as a community, not drinking.  Second, sparkling juices and imitation non-alcoholic beers can easily be substituted for alcoholic beverages.  Sparkling juices look like champagne or wine but are non-alcoholic.  TLC has a “Sparkling Juice Taster” twice a year and patients often find brands and flavors that they enjoy as a substitute for alcohol.  Sparkling juices and imitation beers can be purchased at low cost at most supermarkets.  Third, most people understand that someone on medication cannot consume alcohol.  In many cases, survivors need only point out that they are taking medication and other party-goers will understand why the survivors are not drinking (and then refrain from offering alcohol and/or insisting that those survivors partake).

 
Hopefully this post has been helpful in its elucidation of the specific and substantial risks to brain injury survivors contemplating alcohol consumption and has offered a few effective ways to approach managing those risks during holiday celebrations.

 

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