Tag Archives: aneurysm

Walk for Brain Injury

The Brain Injury Association of America-Texas Division will be hosting a Walk for Brain Injury on Saturday, May 2 at Discovery Green in Houston.  The Transitional Learning Center is proud to be a sponsor of the Walk.  This is a wonderful opportunity to show your support for survivors of brain injuries and their families.  If you are interested in attending the walk, please click on the link below for more information:

http://www.texaswalkforbraininjury.com/

TLC will be sending a team to show support and raise funds for the Brain Injury Association, led by Music Therapist Amanda Gilbert.  If you would like to help Team TLC reach its fundraising goals, please click on the link below.  Every dollar counts!

http://biausa.donorpages.com/WalkHoustonTX15/TEAMTLC/

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

Passover Adaptations-A Brief Guide

Passover is the central family holiday on the Jewish calendar.  Jewish families come together to celebrate at the Passover Seder the Exodus of the ancient Israelites from Egypt.  Tables are packed with guests and overflow with food as participants read through the Passover Haggadah.  Weeks of cooking, cleaning and preparation all come together on the Seder nights into a full-blown celebration of freedom from Egyptian bondage.  Unfortunately, brain injuries suffered in the wake of a stroke or traumatic brain injury event can impact a survivor’s holiday experience.  There is a tremendous beauty in the Passover Seder but after a brain injury, there are new concerns that survivors and their families may need to consider.  This post will identify some of those concerns and make a few suggestions to aid in addressing them.

There are a number of issues that may need to be addressed regarding the location of a Passover Seder.  First, if the survivor is in a wheelchair or uses another assistive device to aid mobility and is going to someone else’s home, is that home sufficiently accessible?  Keep in mind that it is much easier to get a wheelchair across a hard floor than across carpeting.  Even thin carpet can present difficulties when attempting to turn a wheelchair.  Additionally, is there enough room in the bathroom for a wheelchair?  Should the survivor bring along a urinal if it is too hard to access the toilet?  If the survivor has problems with incontinence, is there somewhere available that the survivor could clean up or change clothes if necessary?  Some families of brain injury survivors may find that it is easier to host Seders at their own homes rather than travel to the homes of others since their own homes have already been adapted to the needs of the survivors. Survivors and their families should also consider the physical layout of the rooms where a celebration will take place.  For instance, it may help to move tables and chairs into a different configuration in order to make it easier for the survivor to move through.   Often, seders take place around a large table.  The survivor may find it easier to sit at the end of the table, particularly if he or she is in a wheelchair, than to sit at the side of that table.  Also, how close does the survivor need to be to a bathroom or an exit?  Some survivors have urinary urges that need to be attended to particularly quickly or may need to make a quick exit in order to counteract the detrimental effects of over-stimulation.  There are many other practical issues to consider regarding the set-up of the holiday meal.  Can the survivor reach a given dish or will he or she need help?  Has silverware been left on a counter that is too high for the survivor to reach?  Can the front of the survivor’s wheelchair fit under the table or will the table need to be raised?  If the survivor uses an augmentative speech device like a letter board, is there room at the table for it?  Is a side table perhaps needed for the device to be placed upon?  Small changes in room and furniture layouts can make a huge difference to both a survivor’s sense of inclusion and his or her overall enjoyment of  the Passover celebration.

Survivors and their families will also want to put thought into how loud a seder may be.  Some survivors find that they are more sensitive to noise than previously and that loud noises may now provide a catalyst for unwanted agitation and/or anger.  These survivors may benefit from attending smaller seders or from being sat away from loud children and other factors contributing unduly to agitation.

Another practical issue relates to the drinking of the four cups of wine on Passover.  The cups of wine take center stage during much of the seder, yet many survivors are unable to drink alcohol as it now presents that much more significant a health risk.  For instance, alcohol mixes poorly with many medications and this dangerous mixture can lead to serious health problems.  This obstacle to full participation may lead  survivors to feel conflicted about the four cups of wine.  The first thing to keep in mind is the vital relevance of consultation with a doctor.  If a doctor has identified consumption of alcohol as a serious health risk for the survivor in question, then by Jewish law that person cannot drink the alcohol.  It is important to keep in mind that maintaining one’s health is one of the 613 commandment in the Torah and it cannot be violated even to honor the four cups of wine at seder.  Many rabbis including Rabbi Soloveitchik (recognized as one of the great rabbinical minds of the 20th century) have ruled that grape juice can be used at seder instead of wine.  Families may wish to have grape juice for all seder attendees instead of wine so that a survivor does not feel left out.  For those that are unable to drink at all due to swallowing issues and may be worried that they are violating Jewish law by not drinking the four cups, a little historical perspective may provide some particularly helpful insight.  The idea that everyone needs to drink four cups is a stricture instituted by Tosafos (a group of rabbis in the Middle Ages).  Technically only the seder leader is required to drink.

There are other considerations that bear mention when it comes to the eating and drinking done on Passover.  Some individuals cannot eat green, leafy vegetables because they interact poorly with medicines such as blood thinners.  This can be an issue as many families use items like parsley during their seder meals.  Survivors and their families should consult with doctors to assess if the amounts of these substances being eaten in these circumstances will be enough to interfere with the the medications in question.  If that does prove to be the case, rabbis and doctors can help identify alternatives.  As example, instead of using parsley as the Karpas vegetable some people use potatoes.  Consulting with a doctor and rabbi can help one to make the best adjustments while still adhering to the requirements of the seder meal.

Some brain injury survivors utilize certain dietary aids after their injuries, such as meal supplements and drink thickeners.  Survivors and their families may have concerns about whether these items violate the laws of Passover due to being chametz (made from leavened items) and for Ashkenazim, if they are kitniyot (legumes).  However, most major supplements and thickeners are kosher for Passover use by those who are sick or are in medical need.  The Orthodox Union (OU) has a lengthy list of such options that are kosher for Passover.

https://oukosher.org/passover/guidelines/medicine-guidlines/nutritionals-and-dietary-supplements/

The OU also provides a brief guideline on caring for the infirm on Passover:

https://oukosher.org/passover/guidelines/medicine-guidlines/caring-for-infants-and-the-infirm/

For those who are Sephardic, as long as the items do not have chametz, they are kosher for Passover as the issue of kitniyot is just an Ashkenazic issue.

Again, as each survivor’s case differs from the next, it is important to check with both the survivor’s doctor and rabbi prior to deciding if something can or cannot be used or ingested.  For instance, many times people will believe that something is prohibited only to later find that a rabbi rules that it is in fact allowed.

Another issue that can arise is that seder meals tend to be very large with lots of food and this may impact a survivor’s blood sugar levels if he or she has diabetes.  It is important to plan meal choices around this health issue.  Survivors and families should tailor their Passover menus as needed to reduce the chance of dangerous fluctuations in blood sugar.  Also, it should be kept in mind that seder meals tend to be eaten later than is typical of a normal dinner.  For those that have diabetes, it is vital to discuss with a doctor what type of adjustments to medication schedules may be appropriate on the seder nights.  The Jewish Diabetes Association (via the Star-K Kosher organization) has a Passover guide for diabetics:

http://www.star-k.org/kashrus/kk-passover-diabetics.htm

Passover cleaning and meal preparation can be almost as big a component (and sometimes even  bigger) of the overall celebration as the actual seder meal itself.  Individuals spend many hours cooking and cleaning in preparation for the holiday.  This may be difficult for many survivors who are used to doing the cooking and/or cleaning themselves.  This may cause survivors to confront feelings of uselessness or worthlessness and can represent a significant alteration to roles as they have been thus far understood.  It is important that survivors be allowed to participate in this process in any way that they may be capable.  The survivor may not be fully able to cook the chicken that will be eaten as the main course, but perhaps he or she could chop some of the vegetables for the meal or the nuts to be used for the charoset.  The survivor may not be able to handle a vacuum to clean the carpet, but perhaps he or she could help with sweeping the floors.  The survivor may also be able to help set the table or put out the haggadahs.  There is almost always something identifiable that the survivor can help out with if all involved will simply put sufficient effort into determining just what that thing might be.  If a survivor is living on his or her own and is unable to sufficiently manage Passover cleaning unassisted, he or she may want to ask friends or family to clean for him or her.  Also, many synagogues and Jewish organizations can share means to contact individuals willing to volunteer to clean for those in need or can connect survivors with those willing to do so for a reasonable cost.

Another issue that can come up involves the structure of the Passover Seder.  Many brain injury survivors have shorter attention spans than they had previous to their injuries, and many seders tend to be quite lengthy.  Fortunately, in recent years there have been a number of haggadahs published designed specifically to make seders shorter.  For those with extreme difficulties with attention, Rabbi Yonah Bookstein of the Pico Shul states that he has the shortest kosher haggadah available (which allows one to complete the seder in around 10 minutes):

https://rabbiyonah.files.wordpress.com/2012/04/the-10-minute-haggadah.pdf

The 30 minute Seder is another haggadah option available to those seeking a briefer service.  This haggadah was edited by Rabbi Bonnie Kappel of Temple Chai and the US Army Reserves:

http://30minuteseder.com/

The seder is a very language-heavy service which may present particular difficulties for brain injury survivors with aphasia.  Gateways has published a haggadah which is more picture-oriented and includes the use of Boardmaker symbols that many survivors with aphasia already use in conjunction with augmentative speech devices.  This haggadah was written by Rebecca Redner and reviewed by a number of rabbis including Rabbi Neal Gold of Temple Shir Tikvah.  It was created more to aid youth with special needs, but may be more appropriate than other haggadahs for adult survivors with aphasia.

http://jgateways.org/Resources/GatewaysHaggadah

Matan, an organization serving Jewish youth with disabilities, has a number of Passover resources that translate verbal parts of the Seder into visual representations.  Though these picture-centered resources are strictly speaking intended for use by children, adults with aphasia may benefit from an integration of such materials into their Passover activities.

http://www.matankids.org/tag/passover/

As it is common for family and friends to take turns reading  sections of the haggadah during the seder, survivors with aphasia may feel especially left out of during the seder service.  But just as with the Passover preparation and cleaning, there is almost always a role the survivor can play in this portion of the seder.  For instance, it could be the responsibility of the survivor to dip the green vegetables into the salt water and/or to hand out pieces of matzah to everyone at the seder.  The survivor could have the job of pointing to the shankbone, matzah and bitter herb during the section regarding Rabbi Gamliel.  Survivors with aphasia do also tend to do better with familiar songs.  In spite of a survivor’s struggles with language, he or she might still be just as able to sing the refrain “Dayenu”, as this is a common line that a survivor may well have sung for many years.

Lastly, at some seders there is a general desire to rush through the haggadah to reach the meal or to finish the second half of the haggadah quickly.  Family members and loved ones need to take care to afford sufficient consideration to survivors now contending with slower processing speeds and keep in mind that these survivors will now require that the seder be proceeded through at a slower pace than most may be inclined to attempt.

These are just a few suggestions regarding areas in the Passover Seder that may need to be adjusted after a brain injury in order to better ensure a survivor’s full participation and enjoyment.  Wishing to all a wonderful and meaningful post-injury Passover!

Thank  you to Rabbi Joel Levinson of Temple Beth El of Patchogue for reviewing the content of this post and Rabbi Daniel Masri of Beth Rambam of Houston for providing information on Sephardic practice.

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

Tips for Improving Attention

Attention is an important skill. It plays an integral role in almost everything we do. Attention is vital when we engage in daily activities such as paying bills, driving a car and safely walking through a busy parking lot. After a brain injury, many survivors notice significant challenges in the realm of attention.  Their attention spans may be much shorter, they may find themselves now to be far more easily distracted than they once were, and multitasking may no longer be in any real way feasible. Here are a few tips to help improve attention:
1.  Find a quiet location to work on activities. The more quiet the surroundings, the less likely distraction is to present as a significant factor while completing those activities.
2.  Remove all distracting items such as cell phones, Ipads and radios while involved in activities.  One should also silence ringer/alarms on phones and watches.
3.  Let other people in the vicinity know that silence is needed when working on an activity so as to minimize likely instances of disruption.  Often, a “Do Not Disturb” sign works well to notify others to be quieter.
4.  Break down activities into smaller, simpler tasks. It is much easier to pay attention to smaller, simpler tasks than it is to contend with larger, more complex activities.
5.  Do one activity at a time.  All people, whether they have a brain injury or not, are better at focusing on a task if they tackle just one activity at a time rather than make an attempt to multitask.
6.  Organize activities before starting them. It is far easier to focus on organized activities than it is to grapple with disorganized ones.  Good organization also provides a road map for how one can most successfully approach a task.
7.  Schedule regular breaks during activities. Most people can only pay attention effectively for a limited period of time until they need a rest and that already limited period may be significantly diminished following a brain injury.
8.  Set up a reward to accompany completion of an activity so as to help with motivation and focus.  For instance,  watching a favorite movie or eating a favorite snack could be arranged as a reward to be enjoyed upon conclusion of a task.
9.  Make sure to eat well, stay hydrated and get plenty of rest. If a body is not functioning at its top level, attention skills will often be the first cognitive skills to suffer.  Many brain injury survivors find that strictly adhering to a well-considered health regimen is far more important to success after an injury than it was before.
10.  Ask people to speak slowly or repeat themselves if paying attention when they are speaking proves difficult.  People get far more upset if their audience misses what they are saying than if they have to repeat themselves in order to ensure that they are fully understood.
11.  If in a group of people, be sure to stay facing the person who is speaking.  If there are too many people around to effectively attend to, ask the person speaking if he or she could step away from the group to make focus more attainable.
12.  If in a classroom or meeting, make sure to sit in the front of the room so as to be closer to the speaker.  This not only removes as a factor distracting people and noise along the pathway to the speaker, but it also demonstrates interest in what the speaker has to say.
13.  Place a fan or a white noise machine by doors to help eliminate distracting noise coming from the outside of rooms.
14.  Place a bright colored piece of paper under a book being read.  This helps the eyes to stay focused on the book instead of on outside distractors since our eyes are naturally attracted to the bright color. Also, one can place a brightly colored ruler, index card or piece of paper under the line being read so as to help keep eyes focused on that line.
Hopefully this provided a few ideas on how to help improve attention!

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

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 right there with brain injury survivors in the trenches of the recovery battle 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 involving 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 in the movies when a protagonist will be seen to simply wake up as if from a deep sleep able to immediately resume regular activities.  Most survivors of moderate to severe brain injuries will enter post-coma into 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 this stage very different from later stages of recovery.  First, as per the name, survivors contending with 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 then return to find that the survivor has no memory whatsoever of the conversation just had or even that the friend had visited at all.  Second, survivors in the midst of struggles with PTA often will have temporary changes in personality.  They can in many cases be more impulsive and aggressive than was once typical for them.  In fact, they may need medication in order to help calm them.  They may be confronted by numerous  hallucinations and/or delusions.  Often such delusions will take on a paranoid tone with patients possibly believing that nurses and other healthcare professionals are trying to kill them or that family members are trying to steal their money.  Third, these patients generally have poor awareness of deficits and tend to act in an unsafe manner.  Considered on the whole, brain injury survivors in PTA can have moments in which they are quite abusive to loved ones (even though they may not truly intend to be abusive).  This can be very tough on the caregivers who just went through the trauma of nearly losing those loved ones and who now only want to support their loved ones’ recoveries.  Moreover, due to poor awareness these survivors will often reason with, beg and plead for the caregivers to get them out of the hospital or rehabilitation facility even though there is a clear need for treatment.  It is a source of immense emotional strain for caregivers to constantly have to tell the survivors that they cannot simply be taken home and that the survivors need to remain in treatment.

As the survivor improves and emerges out of PTA, these early stages of recovery can be exciting as caregivers are able to track clearly identifiable improvements from each day to the next. However, this is also the time when caregivers confront some of the first true reality checks indicating just how long a process they now face.  During the initial crisis stemming from the injury event, the focus of the families is primarily on survival and families do not have much opportunity to ponder the long-term effects of the injury upon the lives of those involved.  As families come out of “survival mode” and bear witness to those first few faltering steps on the road to recovery, the reality sets in that the process of recovery is far more of a marathon than a sprint.  Part of the central misunderstanding often encountered can be traced to the fact that most peoples’ familiarity with injuries doesn’t extend very far beyond that of a broken bone or similar injury.  The formula in such a scenario tends to be relatively straightforward:  the doctor operates on the injured body part, the patient takes some time to allow for the healing of that body part and then following a brief passage of time everything is better.  Brain injuries can be relied upon to almost never adhere to such a formula, and this is particularly the case when moderate to severe brain injuries are involved.  A surgery cannot undo the brain damage suffered in the wake of a stroke or car accident.  The brain heals at a much slower rate and active, persistent rehabilitation is necessary in order to achieve the positive results so desperately sought by survivors and their loved ones.  In this initial stage, caregivers often begin to worry about how long recovery might take and to what extent the survivor will even be capable of a recovery.  They begin to worry about how deficits suffered will affect things such as interpersonal relationships and work life.  There is often a general fear of re-injury that lasts throughout the recovery process and beyond.  Day to day improvements witnessed often bring hope, but a slow rate of recovery just as often contributes to inescapable, nagging doubt.  On top of everything else, while they are experiencing their own doubts, caregivers often go to great lengths to display only unflagging hope to the survivor that the survivor will see an excellent recovery.

During this initial stage of recovery, families also start to feel the first stress of financial changes brought about as  a result of 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 themselves will often find it necessary to spend significant time away from work as they monitor loved ones.  Many hospitals charge for parking and caregivers may spend hundreds of dollars in a single month just to spend time with their loved ones.  Financial arrangements often must be made to address necessary equipment not covered by insurance (presuming that the survivor even has insurance).  Often this is also the first time for stressful battles with insurance companies over locating rehabilitation opportunities.

Moreover, friends and family members tend to loyally visit the survivor and support the caregiver during the period immediately surrounding the injury event but as time goes on, the phone calls and visits tend to decline and the caregiver may begin to feel more and more alone.  Those friends and family members can return to their lives from the world wrought by the survivor’s injury. Unfortunately the caregiver is afforded no such 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 explore engaging in their own psychotherapy and/or counseling.  Caregivers need to remember that they cannot do their best to support loved ones if they do not allow themselves to accept appropriate help. The stress of caregiver burden is tremendous and often professional support is needed. Some caregivers may benefit from a medication regimen (such as taking anti-depressants).  Caregivers often benefit from support groups attended by other survivors and caregivers who can offer guidance 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 to better understand the situation now faced.  Caregivers should ask therapists and doctors to sit with them and explain to them the details of the survivor’s brain injury.  They should also ask for help finding books, websites and pamphlets that can lead to a more complete understanding of the 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 resources to look to when embarking upon that learning process.

Caregivers often need to remind others that support remains just as vital well past the point of the survivor’s struggles in the throes of that initial near-death situation.  Family and community members need to make extra effort to continue to call or visit.  A simple letter or email can help the caregiver feel less alone and more supported.  Family or community members can be tremendously helpful in giving the caregiver a break by staying with the patient so as to give the caregiver opportunity to get some much-needed rest or take care of neglected personal needs.  Even just an hour break to allow for a caregiver to get his or her hair cut can offer a significant level of dearly appreciated relief.  Community members can also organize rallies or fundraisers to help support the emotional and financial needs of the survivor and caregiver.  Such rallies and fundraisers can give a tremendous lift to the beleaguered spirits of those navigating the injury experience.

These rank among the more pressing issues that contribute to caregiver burden during the initial healing stages.  It’s hoped that employing the strategies shared above can serve to mitigate said issues.  Feel free to comment below with any 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 college athletics powerhouses such as the University of Texas, the University of Oklahoma and Baylor University.  There are two pieces to the policy which strike as particularly important.  First, the new policy affords university medical staff position to make the sole and incontrovertible decision as to whether or not an injured player should be allowed to return to play while also removing from the teams’ coaches purview any form of employer’s authority over the medical staff.  This allows medical staff to make important medical decisions in an environment absent any fear of retribution from coaches.  Second, it states that any player diagnosed with a concussion cannot return to play or practice the day that that concussion is suffered.  This will hopefully eliminate dangers presented by the previous practice of returning concussed players back into games where they then face risk of suffering a more serious subsequent brain injury.  Remember, concussion is just another word for brain injury.  This truly is a step in the right direction when it comes to the reduction of brain injuries experienced in the world of college athletics and the improved treatment of those injuries suffered.  The link below will take you to the Big 12 press release covering this 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 in which a brain injury survivor can make his or her Valentine’s Day experience a more successful one.

For survivors with speech deficits (generally referred to as “aphasia”), Valentine’s Day can be particularly stressful.  On Valentine’s Day people say “I love you” to loved ones and survivors with aphasia may find it frustratingly difficult to reciprocate, as effecting this once simple vocalization is for them no longer simple in any way to achieve.  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 adequately express this heartfelt sentiment.  Speech therapists often work with survivors struggling with aphasia in order to help them to say important phrases like “I love you” and it is generally a good idea for those survivors to practice repeating these useful phrases on a daily basis.  Many survivors with aphasia can say simple phrases if someone starts to say the phrase with them or just accompanies them through the entire vocalization.  For instance, the survivor may be able to say “I love you” if his or her loved one helps him or her to initiate by saying “I lo….”.  Even if it takes some help getting the words out, most brain injury survivors will feel good about the accomplishment of having said the full phrase correctly.  Even if the survivor cannot quite get the words out, he or she is clearly trying to express his or her love.  Loved ones should accept and acknowledge the emotion behind the attempt.  In the end, it is truly the emotion that counts.

Another big Valentine’s Day change possibly seen in a survivor’s post-injury life relates to the way in which the holiday may now be celebrated.  For example, many survivors are accustomed to arranging for loved ones extensive meals, large events or extravagant celebrations on Valentine’s Day.  They may be used to purchasing huge bouquets, pricey wines or expensive chocolates.  After a brain injury, survivors and their families are often forced to adapt to a considerable decrease in potential household income and just as often struggle with substantial medical debts.  Some survivors may feel guilty that their injuries cause this change in holiday celebrations.  Many survivors that are hospital-bound may feel like they have ruined the holiday with their injuries.  From the perspective of those family members though, 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 could be purchased.  There are a number of helpful ways in which to approach these issues.  Survivors may need to be reminded that they did not ask for the brain injury to happen, so they should therefore 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 as (if not even more than) purchased items.  In cases in which survivors  do purchase items, loved ones may wish to take special care to reassure those survivors that a small item purchased is appreciated just as much as a larger such item would be.  In some situations, such as when a survivor is spending time as a patient in an inpatient rehabilitation facility, that survivor may need a friend or family member to purchase on the survivor’s behalf an item the survivor intends to give as a gift.  Most importantly, loved ones may need to help the survivor focus on what everyone values the most.  Above all else, those involved should never lose sight of how precious the opportunity to celebrate their love together is.  That this opportunity for shared appreciation was very nearly permanently lost as a result of the injury suffered should only emphasize its incomparable value.

Sometimes there are dietary issues that may be brought to the fore when engaging in Valentine’s Day festivities.  Valentine’s Day gifts tend to involve copious amounts of chocolate and sweets.  For survivors with diabetes, eating large amounts of chocolate and sweets is invariably accompanied by significant risk of serious health complications.  Loved ones may want to give non-food gifts like flowers or other such items to diabetic patients.  Also, people tend to go out to eat for Valentine’s Day meals.  Any instructions by speech therapists such as using thickener to make drinking liquid less of a hazard or adhering to safe swallowing techniques need to be carried out in restaurants just as they would be at a home or at a rehabilitation facility.  It may not seem romantic to thicken a drink during a candlelit dinner at a white tablecloth dining establishment, but there is certainly nothing romantic about contending with an identified swallowing issue leading 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 as regards a brain injury survivor’s participation.  If a survivor has physical mobility issues, that survivor and his or her loved ones need to hold accessibility as a key aspect of any venue selection.  Though all public buildings must by law meet a minimum threshold of accessibility, some venues are simply better suited to the needs of those with significant mobility issues than others.  One relevant question to consider would be which restaurants have wider spaces between tables allowing greater ease in wheelchair navigation.  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 so as to make it easier to enter and leave while avoiding the normal crowd of movie-goers.  If a survivor would do best with a particular seating arrangement (such as being closer to the door to limit the distance he or she will be required to walk), venues will almost always assist in such a scenario as long as they are contacted in advance.  A simple phone call to a restaurant can often guarantee that 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 patronizing any of these establishments at off-peak hours.  This can not only mitigate challenges faced by those with mobility issues, but it is also usually the best choice for survivors that have a tendency to become easily agitated when in large crowds.  Some survivors may do best with a home-based or facility-based celebration rather than going out into the community if they have too significant a difficulty with mobility or managing agitation.  Others may do best by celebrating Valentine’s Day a day early or a day late so as to avoid the holiday rush and stress.

One oft-ignored issue is that many brain injury survivors simply do not feel attractive faced daily as they are by ever-evident knowledge of permanent changes their injuries have wrought.  They may look at themselves and see body parts that do not move, now necessary constantly present aid devices, prominent scars or other injury-related alterations to their physical appearance that make them feel ugly.  In almost all cases, loved ones will still feel  strong love for and a powerful sense of connection to the survivors.  Sometimes, contending with life in the aftermath of such an injury will have the effect of even increasing these feelings.  It is vital for loved ones to express their feelings to the survivors and to be sure that they let the survivors know how much the survivors are loved.   Survivors may need more encouragement and reassurance of their attractiveness than they needed in the past.  Further, survivors should be encouraged to dress as they normally would have (or as best as they can now manage given their needs).  For instance, if a survivor normally wore make-up prior to her injury, she should be encouraged to still 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 helped to explain a few of the issues that may accompany Valentine’s Day celebrations and offered some useful suggestions to aid brain injury survivors in maximizing their holiday experiences.

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