VIRGINIA COMMONWEALTH UNIVERSITY

NATIONAL RESOURCE CENTER
FOR TRAUMATIC BRAIN INJURY

Neuropsychology and Rehabilitation Psychology Division Department of Physical Medicine and Rehabilitation.

Pat #17

DEAR PAT: Do you know of any resources available for obtaining a specialized wheelchair for a low-level brain injured patient with no access to financial resources?


PAT'S RESPONSE: Finding money for specialized equipment is often very difficult. Wheelchairs often range from around $1000 for a basic model to more than $10,000 for more specialized power models. There are a few options for financial assistance that you might explore. First, carefully check the patient’s insurance policy. Some policies pay for necessary medical equipment such as wheelchairs or other specialized healthcare equipment. Contact your state’s Department of Rehabilitation Services to find out if your state offers financial assistance for such situations. If that is not an option - churches, community groups (Rotary or Kiwanis clubs) or other charities may be willing to help you raise money. Often, people are willing to help if you just ask! If other people have suggestions that Pat hasn’t thought of, send your ideas!

DEAR PAT:I am an avid reader of your articles since my brother became a survivor 7 months ago. He had water around his heart (pericardial sac) that was misdiagnosed as pneumonia. He went into cardiac arrest at the hospital and the residents did open heart massage for 20 minutes. He is now totally dependent on his wife who also cares for their two small children. I am there daily and on the Internet nightly, looking for all information. My question is - Where can I look for similar cases as ours to sue the hospital and doctors? The expenses are enormous to keep him at home. This is our only recourse, we are involved with the Mayo Clinic now. That is a blessing, but now my family is considering bankruptcy. My brother is 51 years old. We celebrated his birthday in ICU while he was on life support. Life’s not always fair, but we need to find out if others had this happen and what is our legal recourse. I did go to an attorney who is waiting for records from the hospital. I had to give him $5,000 just to review the case, non-refundable. I have learned that what needs to be done, I must look into myself. Where can I go to review other lawsuits?


PAT'S RESPONSE:I’m very sorry for this tragedy in your family. Your story shows how brain injury and illness affect entire families, not just the patient. As my readers know, cardiac arrest can result in brain damage from lack of oxygen to the brain – and this sounds like the case with your brother.



As for your question about malpractice – it’s hard to comment on the specifics of your situation. Pat is not a lawyer or a cardiac or respiratory specialist. I do know that fluid in the pericardial sac is often the result of viral or bacterial infections such as pneumonia. Pat isn’t qualified to assess whether your brother’s treatment conformed to standards of practice or if the physicians failed to identify the pericardial fluid when they should have… Consultation with a specialist in cardiac or respiratory illness may provide some answers for you.

There are some other resources on the Internet that you have probably located with your Internet savvy! There are many legal and medical websites that may better address your malpractice questions. I am concerned that you gave an attorney $5000 of non-refundable money just to "review" the case. Many attorneys offer free initial consultations and free legal aid is available for people who do not have the ability to pay attorneys’ fees. It is important to find out if you have a good case before you spend large amounts of money – especially if your family is having financial problems. It is important to weigh the financial risks of bringing a lawsuit against the potential benefits of a settlement or successful suit. I hope that you will find justice and that your family will successfully adjust to this terrible tragedy.

DEAR PAT: I am a long-term care Administrator. Our facility is attempting to deal with a 74-year-old woman with a brain tumor, which is growing and causing aggressive behavior towards other residents. I am unable to find a facility in our area of Southern Wisconsin that would be appropriate for discharge. Where can I access a list of such facilities?


PAT'S RESPONSE:It is often very difficult to find placement for violent or aggressive patients. Such patients require extra resources, are stressful for staff, and can create dangers for both staff and other patients. Other facilities that do accept aggressive patients may limit the number they accept due to staffing and other concerns. In your case, it sounds like your facility is in a difficult predicament with this woman. I would make a couple of suggestions in the short-term. First, work closely with her family and physicians (consider a psychiatric consult) to identify medications that may help to decrease aggressive behavior and to make this woman comfortable. Second, be sure your staff is trained in the proper way to restrain aggressive elderly patients. Consider consulting a psychologist to develop a behavior modification plan. Even with cognitive impairments, many people are still responsive to behavior modification techniques. Finally, try to identify when this woman is becoming agitated and develop a plan for dealing with her aggressive behavior that protects her, your other patients, and your staff. It sounds like a tall order – and it is. (Probably why you’re having such a hard time finding an alternative placement). For your facility, it sounds like it’s only a short-term solution until you can find a more appropriate placement.



I don’t know if I can be of much help to you in Wisconsin. About all I can suggest is that if you haven’t already done so, you might want to contact the Wisconsin Department of Health and Family Services. On their website, they provide contact information for people who should be able to help you identify good nursing home or mental health facilities for this woman. You may also want to look into facilities specializing in Alzheimer’s, as they often have to deal with unusual behaviors.

Their website for adult resources in Wisconsin is:

http://www.dhfs.state.wi.us/reg_licens/adults.htm

Many rehabilitation professionals have been concerned for years about a lack of resources of aggressive patients – and too many end up in inappropriate placements. Unfortunately, the problems of placing neurologically impaired, aggressive, elderly patients are only likely to increase as the population ages.

DEAR PAT: I am looking for any information on help for a person with traumatic brain injury who has aggressive, violent episodes. The individual is now 39, was 6 when accident occurred. He is falling through the system, difficult placement due to behaviors. But behaviors are not all the time. There is a great person trapped. Would like to be able to offer parents hope. Also are there any support groups for the parents of traumatic brain injury?


PAT'S RESPONSE:If you read the question right before yours, you know that you are not alone in experiencing problems finding an appropriate placement for persons whose neurological problems lead to aggressive or violent behavior. Unfortunately for this gentleman, he’s very young and appropriate placements may be even harder to find. There are many persons with brain injury in the criminal justice system because of their inability to control their impulses. If he is a danger to others, it is extremely important that he follow the treatment recommendations of his doctors very closely. A few suggestions –



1. Be sure he is properly medicated and closely followed by a psychiatrist who has expertise in working with persons with brain injury and/or managing violent behavior.
2. Talk to a psychologist or other behavior management expert about what the family can do to set up a good environment for this man. Encourage him to participate in psychotherapy with a neuropsychologist or other therapist specializing in brain injury rehabilitation. Support groups are also helpful for many persons with brain injury – it’s often easier to talk to others who have "been through it."
3. Try to identify what triggers the "violent episodes." Is he having seizures that contribute? Do "episodes" occur when he is overwhelmed, stressed, or fatigued? Does alcohol and/or drug use contribute? Identifying situations likely to bring on aggressive behavior can help to avoid the situation in the first place.
4. Consider if there are emotional or psychological factors that contribute. Frustration, depression, or anxiety can contribute to angry and aggressive feelings.

Although persons with brain injury often have more difficulty controlling violent or aggressive impulses, this doesn’t mean it’s impossible. It also does not excuse violence or hurting others. If the person knows right from wrong and is cognizant of the problem, it is his responsibility to follow treatment guidelines, accept responsibility for his actions, and work to modify his own behavior or avoid situations likely to cause "outbursts."

Finally, yes there are support groups for family members of persons with traumatic brain injury. Many patient groups also welcome family members. Contact your state’s Brain Injury Association chapter or visit http://www.biausa.org for more information – including contact information for the state chapters.

DEAR PAT: My daughter suffered a severe closed head injury and is 17 months post injury. Her short-term memory is impacted greatly. She has an IEP and is in the normal classroom with learning support. However 2 classes are very auditory and try as we may the instructors will not make the courses visual. Are there resources available to make subjects visual? How can we access them?


PAT'S RESPONSE:It would be helpful to know which two subjects you are concerned about. Some classes are easier to teach "visually" than others are. It would also be helpful to know if your daughter’s reading skills are impaired, or if her limitations only extend to information she hears. If your daughter’s difficulties are limited to problems learning from a lecture format, it will be important to supplement her learning with information presented in class with outside readings as well as information presented visually in the form of graphs, charts, or diagrams.



Your daughter may also benefit from tape recording lectures for later review at home (you may be able to help supplement these lectures with visual information). Hands-on learning, demonstrations or watching educational videos/documentaries may also be helpful. Finally, many subjects can be supplemented with educational software that provide multi-media learning opportunities.

DEAR PAT: My father was recently in an automobile accident where he suffered brain trauma, I have many concerns. He is very lucky to have lived because his BAL was three times the legal limit. From this accident, he suffered three skull fractures and two hematomas, one on each side of the brain. He was never in a comatose state. It is 2 1/2 weeks later and he talking to people and is even remembering things from the past. He now has a very short attention span and occasionally has childish spells. I am wondering what type of behavior is typical for people who have suffered basilar and occipital fractures, and what role his hematomas may play a part in his recovery. I must also add that there have been a series of CT and the hematomas have gone down, the doctors expect them to take care of themselves, although later it may be necessary to drain them. Do you have any advice? Thank you!


PAT'S RESPONSE:Hematomas are blood clotting in tissue. I’m sure your father’s physicians will monitor these closely. As you noted, surgery is sometimes required to remove the clots. As for "typical behavior," it is very difficulty to predict brain injury outcome from skull fractures, or points of impact. The reason is that in high-speed traumas such as motor vehicle accidents, the brain can sustain multiple impacts as the person (and the brain) bounces around during accident. The brain often rebounds inside the skull creating injuries opposite the point of impact. In addition, diffuse injuries can occur because of rotational forces. Alcohol use at the time of injury further complicates the picture. Research has shown the persons who are intoxicated at the time of a brain injury are likely to have more problematic post-injury symptoms. Hopefully your father will beat the odds in this regard. To sum up, behavior is just very difficult to predict based on a CT or a MRI. As frustrating as it may be, there usually isn’t much to do, but "wait and see."



Probably the best advice is to be patient and remember that recovery from brain injury is a long-term process. You will have a better sense for how your father’s recovery is going after about six to twelve months. It is important that he follow all his doctors' treatment recommendations and that he refrain from alcohol use (which limits recovery). You may also want to consider having a neuropsychological examination done to establish a baseline against which you can measure future recovery.

DEAR PAT:I’m trying to find information, research, and written information on recreational activities or after-school activities for teens with brain injury. That is, not focused strictly on academics. There is life after school, and it doesn't have to be filled up with more and more educational tutoring/homework. My eyes are getting sore from finding so little on this subject, aside from a couple of general articles. Any bright ideas?


PAT'S RESPONSE:The answer to this really depends on how severe the child’s injury is and what the symptoms are. In most cases, persons with mild to moderate brain injury deficits can participate in social or recreational activities with non-injured people. Activities such as scouts, church groups, or art classes will provide opportunities for socializing and community participation regardless of ability level. In addition, the child may have talents that are unaffected by injury – such as music that provide enjoyable outlets. Many teens enjoy finding activities where they are not necessarily labeled as "brain injured." Obviously, contact sports such as football, basketball, or soccer should only be considered with a doctor’s permission due to the risk of re-injury. If the person’s injury was serious it may be better to avoid such sports entirely.



If the child has more severe symptoms or has behavior problems, you may want to explore some other alternatives. Hospitals that serve children and adolescents may have support groups for teens with brain injury – and some of these may also have social and recreational activities. There may be groups for teens with learning disabilities (or physical disabilities). Remember, in many cases, brain injury is a kind of acquired learning disability and many activities, groups, and interventions may be useful with children with brain injuries.

DEAR PAT:Dear Pat: I am a graduate student who suffered a mild TBI from a sports concussion 2.5 years ago. I have concentration deficits and experience problems reading and writing at the level of a graduate student. I am determined to finish my degree but I am behind schedule and meeting opposition from my advisor and graduate department. A neuropsychologist told me there is nothing I can do except spend extra time to get my work done. Are there rehab programs that address deficits in high functioning individuals? I would very much like to find solutions to my problems.


PAT'S RESPONSE: Most rehabilitation programs are more focused on helping people with more severe deficits. As a graduate student, you’re sort of doing the equivalent of professional sports for the brain. It requires very high level cognitive skills such as attention, communication, and memory. Knowing your strengths and weaknesses is very important. Attention problems can often be compensated for with a number of behavior interventions, which you have probably already discussed with your neuropsychologist. Reading and writing will depend on what the specific problems are. For example, if it takes you longer to write due to motor skills, you might consider voice recognition word processing software. On the other hand, if the issues are reading comprehension and/or organization of writing, your neuropsychologist may be right. It may just take more time and effort and/or some tutoring to compensate.



You may also qualify for some accommodations from your graduate school under the Americans with Disabilities Act. For example, you might get extended time for test taking, be able to test in isolation, or have a tutor provided. If you think something like this might be helpful, talk to your school’s student disabilities department about this.

There are also two very important questions you will need to ask yourself – and they’re very hard questions -

1. Are going to be able to function at a high level in your chosen field? For example, if you are going into a field that requires a great deal of reading and writing at a high level, you need to ask yourself if you can compensate. Can you learn to compensate for your disability and function as well as your peers? Are compensations you receive in school (extra time, tutoring) reasonable for an employer to provide in the workplace? You also need to consider the cost of making a mistake due to inattention or misreading something. In some fields, the mistakes can be corrected with minimal cost (other than perhaps embarrassment) but in some fields (such as health care) mistakes can cause significant harm.
2. Will it be worth the extra effort and energy needed to compensate for your injury related deficits? For example, if it takes you extra time to compensate for your deficits, you need to be prepared to spend that extra time to get the job done. In other words, what might take 40 hours per week for a non-injured person may take 50 hours for you. You might be able to do the exact same job, but if you have to read and write as part of your job, it may take you longer to do the same amount of work.

If you believe you can do it and you’re willing to put in the effort and energy, then the best thing you can do is to devote the time and energy needed to complete your degree. Continue working with your neuropsychologist and continue to explore options and compensatory strategies. If attention problems are significant concern, talk with your physician about the risks and benefits of a medication trial. Another option to talk to your neuropsychologist about is whether taking some time off might be helpful. Sometimes stress can limit recovery from an injury, and perhaps you would benefit from a year away from school to allow further recovery and to assess your options.

If you decide the answer to either of the two questions is "no", then you need to consider other career options. Talk with your neuropsychologist about your strengths and consider career counseling to assess job options that play to your strengths!

You sound like a hard-working and dedicated person and I’m sure there is a lot of success in your future!

DEAR PAT: It seems like most of your questions are related to severe head injuries. What about the minor ones? I’ve had a headache daily now for over 4 months since being injured. Any advice?


PAT'S RESPONSE: If I had a daily headache for four months, I wouldn’t call that minor! First, you need to talk to your physicians about your headache. They may be able to recommend some medications to cope with the headache. You may also want to consider behavioral techniques such as relaxation training or biofeedback to help you cope with pain. Other things I would advise include avoidance of high stress situations and getting plenty of sleep each night. Stress and insufficient sleep can both limit recovery after a brain injury. Consult with a physiatrist, neuropsychologist or pain management specialist (or all three) to get a better sense for your specific prognosis!

DEAR PAT: My husband fell 100+ feet in a plane crash in April 1999. He sustained a severe brain injury and is still struggling with attention and memory. Also, within the past three weeks he has recurring smells of cigarette smoke when no one is smoking. He is under the care of several doctors, but wonder if you have any info on the smoking smell. Thank you – his wife.


PAT'S RESPONSE:Pat certainly hasn’t encountered this symptom before! It’s probably impossible to know for sure what’s causing it. It’s possible that he is experiencing a mild hallucination (probably on a par with hearing someone call your name when no one is there). It could also be that his injury has triggered an association with the part of his brain responsible for storing "cigarette smell" in his memory. Perhaps there is an odor in the environment that his nose detects, but his brain mislabels as "cigarette smoke." Sometimes patient who experience seizures smell an odor before a seizure (although you don’t mention seizures). Pat’s open to other explanations if someone can suggest one.



This problem could actually be serious if your husband believes there is a fire in the home – or conversely if he fails to respond to a smell of smoke because he believes it is just "in his head." You may want to check the smoke detectors in your home to be sure they are working – just in case! Unfortunately, I’m unaware of any specific treatments other than to wait and see if this is a temporary symptom.

DEAR PAT: I was very impressed with this site. I found it helpful and informative as well as emotional. Thanks a lot. Here is my question: My sister suffered a TBI almost a year ago. She has had a great recovery, so far. She is now back to work and functioning quite well. Now she is having a problem admitting that the TBI has had that much of an effect on her life. She is in denial, she is a much different person because of the injury but won't admit it. It has been really hard all of the family. I have suggested therapy but she doesn't see that there is a problem. I have come to terms with the fact that I can't have my sister "back" the way she once was but I want to establish a new relationship her but I don't know how. If you can help – thanks so much. If not -thanks for listening.


PAT'S RESPONSE:Thank you for your kind comments. Pat just loves compliments. Onto your question! After a brain injury, people often seem "different" to family and friends. This can be due both to effects of the injury on personality and behavior as well as the emotional impact of surviving a traumatic event. It sounds like in many ways your sister has been a remarkable success story if she is back at work and functioning well. Because I’m not sure what the "differences" are, it’s hard to offer any concrete advice. One thing I can tell you is that many survivors of brain injury often become tired of having people tell them they are "different" (even if they are different). If your sister is functioning well, it may be that you and your family need to consider if there are ways you can accept her differences in a positive way. For example, if "differences" mean a different likes and dislikes, different attitudes, or different ways of doing things, it may just take time to "get used to" your "new" sister. On the other hand, if "differences" include irritable mood, low frustration tolerance, or angry and aggressive behavior, you can certainly talk to your sister about this and encourage her to seek counseling (or even consider family counseling with your sister). However, you must remember that she is entitled to make decisions about her life – including decisions about whether to seek help or not. The only exception to this would be if she is danger to herself or others (then you can ask a judge to intervene). If her behavior makes it uncomfortable for you or other family members to be around her, you may have to think about limiting your interactions to only include those that are brief and pleasant.



Somehow, I’ll bet a sister as concerned and devoted as you will find a way to work things out!

DEAR PAT:I am an instructional aide at an elementary school. I have just been assigned to work with a second grader who is near drowning victim. I don't know a lot about the child other than the parent's refusal to allow him special services from school because that would label him special ed. At this point, the teachers and school are trying to deal with the parents and in the meantime I have this sweet boy for two 30 min. sessions a week. I need some kind of direction as to how to work with him. At times he is somewhat alert and he knows some letter sounds but seems to be unable to put letter sounds and shapes together to form a word. At other times he is drifting and unfocused. His eyes rolling back in his head. He seems to have short or very little retention of what we are working on. He is on a modified curriculum. Help! What can I do for this child with such short and limited time frames?


PAT'S RESPONSE:I wish every child could have educators who were as dedicated and passionate! Unfortunately, it will be very difficult – if not impossible – to get this child the help he needs if the parents are uncooperative. It sounds like this child needs to have a comprehensive neuropsychological examination to assess his strengths and weaknesses. It is difficult to develop an appropriate and realistic educational plan without knowing a child’s capabilities. If he is in 2nd grade and only knows "some letter sounds" and is yet to form words – he’s clearly very delayed. Without knowing the extent of brain damage or his level of skill, it’s impossible to know what approach will work best or even if he will be capable of learning in a "mainstream" academic environment. In the meantime, you may want to consult with the special educational coordinator at your school (if you haven’t already). You may want to try to adapt multi-modal learning strategies and other techniques used to teach learning disabled students. However, even with that, two 30 minute sessions a week aren’t very much for a child with such significant learning delays.



I certainly understand the parents’ desire not to have their child "labeled." Emotionally, parents often have difficulty adjusting to the fact that a previously "normal" child now has impairments of disabilities as the result of an injury. It is certainly important for school personnel to be understanding and sympathetic to the parents. However, I wonder if the parents are aware of the child’s deficits in the classroom. I don’t know what kind of relationship the parents have with the school at this point, but it might be helpful to invite the parents to observe the class. If this child is noticeably far behind the other children, seeing it with their own eyes may help them decide something must be done.

Talking with the parents about all the options should be considered. For example, if they are concerned about "labeling" the child as "learning disabled" because they believe he will eventually recover – perhaps they could be provided with a label such as "Other Health Impaired." It may also help to explain the children who receive services are periodically re-evaluated and if he no longer shows learning problems at a future date, services could be stopped and he would no longer have a "special education" classification. Finally, the parents could be encouraged to seek an independent neuropsychological evaluation (it may be paid for by their insurance). This would provide them with confidential feedback about their child and his needs. Although the school could not receive a copy of the report without the parents’ consent – at least they could hear from a neutral expert how their child is doing and what his educational needs are. Maybe after hearing the facts, they would change their minds about placement options.

On the other hand, if the parents continue to resist services, tension between the parents and school may increase. Although there are options the school can pursue at that point to force the issue, it’s beneficial for everyone involved (especially the child) for this to be resolved cooperatively.

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