VIRGINIA COMMONWEALTH UNIVERSITY

NATIONAL RESOURCE CENTER
FOR TRAUMATIC BRAIN INJURY

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

Pat #16

DEAR PAT: My 29-year-old daughter suffered a TBI injury in February this year. She had a closed head injury and is experiencing left side weakness, and short term memory problems. She is doing a lot better now and making progress in all areas. I've heard it takes a lot of time maybe years. Is that correct? We’re just thankful she is here today and we feel blessed with her recovery, but it has been a lot of stress. If you know of any support groups in San Francisco…she would like to talk to others her age that are going through the same thing so she doesn't feel she is alone out there. Any advice from them would be appreciated. Thanks a lot!


PAT'S RESPONSE:Recovery from brain injury is a long-term process. The fastest recovery takes place about 6-12 months after the injury. Further recovery does occur, but it is more gradual. Many people experience some permanent changes after a serious brain injury. Short-term memory problems often linger, and most people will never get back to 100% of their pre-injury ability. However, there are a number of good strategies that people with brain injuries can use to compensate for memory problems. Many people use note-taking strategies, schedule books, daily planners, or computer calendar programs to help remember appointments, deadlines and "things to do". Some also find a tape recorder helpful to review important conversations (such as with your doctor) or lectures and instructions.



Your idea of a support group is an excellent idea! No one can quite understand the effect of a traumatic injury like someone who has experienced one. You are also right in recognizing that it is very important for persons with brain injury to understand that they are not alone. I can’t recommend a specific support group in California, but if you contact your state chapter of the Brain Injury Association, they can provide you with referrals to a number of resources – including support groups! This organization that helps thousands of persons with brain injury and I’ll bet they can help you and your daughter as well. The contact information for the California branch is below:

Brain Injury Association of CALIFORNIA
President: Claude Munday
Exec Director: N/A

PO Box 160786
Sacramento, CA 95816-0786
Contact: Terry Stimpso
Phone: (916) 442-1710
In State: (800) 457-2443
Fax: (916) 442-7305
E-Mail: biac@juno.com



DEAR PAT: My brother fell 20 feet and hit his head while at work. This fall has left him in a coma for 55 days now, and all the doctors have been telling us is to wait and hope. My family and I understand that, But Alan started responding to small commands such as - Give a thumbs up, point one finger, or squeeze my hand if your name is Alan. He has even mouthed "Hi," and told them that he was 28. A week later he started having seizures and is back in the TICU. We talked to the doctors and they say that Alan has fluid on the brain again and that the fluids are not draining. They said they would put a shunt in to help the fluids drain, but they said if they put the shunt in Alan still only has a one percent chance of him being Alan again. Now they are telling us that all the little steps that Alan is making are not purposeful. I am totally confused. I don't understand how one minute they are purposeful and now they are not. I will never give up on the power of God, and the strong will that my brother has. Pat if there is any advice that you could give me and my family I would deeply appreciate it. Missing Alan!!!


PAT'S RESPONSE:20 feet is a very long way to fall and survive. As I always tell families who have a loved one in a prolonged coma, the treating physician is the best source of information about the prognosis. He or she best understands the extent of your brother’s injuries and his response to treatment. Be sure to talk with your brother’s physicians and try to understand the nature and extent of his injuries and get a realistic prognosis.



In general, most people eventually "emerge" from comas. However, it is also true that your brother sustained a very severe injury and has been in a coma for an extended period of time. You need to remain optimistic. You also need to be realistic – even if your brother emerges from the coma, there will likely be a long rehabilitation process and many long-term changes. When they say there is only a 1% chance that he will be "…Alan again" they are probably trying to prepare you for long-term consequences. If Alan does emerge from his coma, he is not going to be the brother you had before. Most people who emerge from a prolonged coma after a severe brain injury have significant difficulties related to memory, attention and concentration, motor skills, communication skills, or personality changes. Even if Alan’s improvement is better than anyone expects, he will struggle with some significant changes from this injury.

As for the "purposeful" behavior, this is one of the signs that people look for to assess the level of coma. You are describing purposeful behavior because you saw Alan follow some commands. However, it can be difficult to distinguish between a patient just responding to stimuli and someone actually responding to a command. Even harder to assess are situations where the person is sometimes able to follow commands, but can’t at other times. In Alan’s case, it may also be that he experienced a setback when he had the "fluid" on his brain, and he may need more time to get back to where he can follow commands.

Keep in mind, you also need to take care of yourself and your family. Religious faith often helps through bad times. Consider discussions with clergy, a psychologist or counselor to talk about your feelings and the effect this tragic event has had on your family.

DEAR PAT: I was in a coma for a month and a half from an auto accident. It happened this February. It is hard for me to explain what I am going through. I was working on a Masters degree at Texas Tech after graduating from Louisiana Tech. I am a 36-year-old male I just went to college because after 13 years I finally got out of the Navy. My long-term memory is real good but my short-term memory is bad. I feel like my wife has to put up with another child. I have a quicker temper than I did before the accident and I have a real problem tolerating my kids. I am presently out of rehab and I don't know what to do. Any ideas you have would be greatly appreciated Thank you.


PAT'S RESPONSE: First, I should tell you that what you are experiencing is very common. Short-term memory problems, irritability, and a lower tolerance for stress are among the most frequent symptoms among survivors of brain injury. In addition, people often feel misunderstood by family members – especially if they look healthy on the outside. It is important that you talk to your family. For example, when you say, "I feel like my wife has to put up with another child." – is this how she feels, or is it how you think she feels? Have the two of you discussed the injury’s impact on your relationship?



A therapist with experience working with persons with brain injury can help you to develop ways to manage your anger and frustration. Consider involving your wife in therapy so you can address these problems together. In some cases, there may be medications that can help you better control emotions. You might want to start by keeping what behavior therapists call an ABC diary of the times you get angry. At the end of each day, write down all the things that made you angry using this system:



Antecedent – this is what was happening before you got angry. For example, if you were angry with the kids, what were you doing before you were angry? What led up to the anger? What were you thinking? What were you feeling? (For example, were you thinking about a problem? Were you already upset about something?).

Behavior – this is what you actually did when you were angry. For example, if you were angry because your child misbehaved, what did you do? Did you yell? Curse? Throw things? Hit a wall? What were you thinking about when you were angry?

Consequence – how did things end? How did you calm down again? How long did it take to calm down? Did you accomplish what you wanted to accomplish? (For example, did your children learn what they did wrong and receive appropriate discipline? Did you solve a problem with your wife?) Did you feel better? What was the effect on the people around you? Were they upset? Crying? Avoiding you? It is important to look at the consequences of your anger in order to identify ways to more effectively achieve a desirable outcome.

By keeping a diary like this, you can identify situations that tend to create anger and frustration in your life. There may be ways to avoid some situations that lead to anger and frustration. Are there situations that made you angry that shouldn’t have? Are there situations where your anger is appropriate? You may also identify times of the day, things you’re thinking about, your mood, or something else that contributes to your anger. You might be surprised about what you learn.



You also should keep in mind that everyone gets angry – and sometimes for good reason! How you deal with your anger is very important. Feeling angry is one thing. How you behave is another. It is the behavior that is most important to control. This is especially true with your children. All parents get angry, but good parents maintain enough self control that they don’t curse at, belittle, scream at, or hit their children. Instead they express their anger in a way that both lets the child know what the parent is angry about, teaches a lesson, and reminds the child they are loved even when they do something wrong.

Consider what type of outcome you want when something makes you angry. How can you best accomplish that outcome? Try to figure out ways to express your anger in a way that gets your point across without hurting others. If your anger is especially hard to control, talk to your family about how you would like them to respond when you are angry. For example, should they leave you alone or give you reassurance? What works best for you and your family? Most of the time, when people look at the "C" part of their diary, they find their anger isn’t making things better and they need to find ways to change. Talking with your wife and a therapist about ways to cope will help immensely.

DEAR PAT:I am a first grade teacher with a TBI student in my classroom. I am looking for the best way to teach this student to read. He knows the alphabet and phonetic sounds, however he does not seem to be able to put together the concepts of print to make a word. Can you offer any resources, suggestions? Thank you!


PAT'S RESPONSE:Pat always has suggestions! Some are even good ones! In your case, I can make a few.



First, it will be important for either the school or the parents to see a pediatric neuropsychologist for an evaluation. This would include evaluating a variety of the child’s skills including reasoning, attention, perceptual-motor skills, and basic academic skills. It will be hard for you as the teacher, or for the parents to have a good understanding of the child’s strengths and weaknesses without this type of evaluation. If you can understand the child’s strengths, you will be better able to use those strengths to help the child learn and to compensate for weaknesses. For example, if the child struggles to read, but can absorb information from hearing, that is very important in helping the child acquire academic knowledge. On the other hand, the child may learn better visually, which would be helpful to know as well. In the case you describe, it would be important to know if the child’s difficulty is limited to reading, or if symbolic processing is impaired in a way that will limit written language and math ability as well. So, start with a comprehensive neuropsychological evaluation… but that will take some time to schedule, conduct the evaluation, and receive feedback (this is all provided the parents are open to this course of action).

It will also be important to talk with the special education instructors or other learning disability experts in your school or area. In many cases the techniques to teach a child with an "acquired learning disability" will be similar or identical to teaching a child born with a learning disability. For example, "multisensory teaching" is often used to teach dyslexic children. Using this approach, students may be asked to not only look at the symbol and say the sound, but also to trace or write the letter to see how it "feels." In the meantime, it sounds like the child is lucky to have a caring, concerned and creative teacher. Keep trying new things with this child. For example, if he is very visual, some computer software for young learners might help him to practice basic reading skills. Continue to encourage the child and be sure to have frequent discussions with the parents about your concerns.

More information on dyslexia can be found at:

http://www.interdys.org

DEAR PAT: I am a graduate student in speech language pathology and want to do a thesis on "teachers knowledge of educational and behavioral concerns of children that have suffered traumatic brain injury." I have searched the web and can't seem to find any such study. Would you know of one? Or would you have any information on this topic.


PAT'S RESPONSE:Graduate student? Glutton for punishment huh? Well, welcome to the club. I would say that your first problem is searching the web. The old fashioned search for library books may be the best starting place. If you really want to search for studies, you are better served searching scientific databases such as PsycInfo or Medline. Your university librarian should be able to help you. These databases usually contain studies conducted in peer reviewed journals. If you’re just using a search engine (like Yahoo, Lycos, or Hotbot) to search webpages, you’ll always be at a disadvantage. For example, many peer-reviewed journals (This means other scientists have looked at the paper to be sure it meets scientific standards) do not publish the results on the web (or else why would libraries need to buy the journals?). You will also have a very difficult time verifying the source or quality of any study that just appears on a website. In fact, someone could just completely make up a study and how would you know? Although the web contains lots of websites that provide good, balanced information (like this one!), there are others that are not as good and it’s sometimes hard to tell the difference – especially if you’re researching a topic you’re just beginning to learn about.



[Pat now steps off the soapbox] OK. As for your question about studies… the study listed below seems to directly address your topic. (Pat just read the abstract and can’t comment on the quality or thoroughness of the study).


Title: Misconceptions about traumatic brain injury among educators and rehabilitation staff: A comparative study.
Authors: Farmer,Janet E.; Johnson Gerard,Mary
Journal:Rehabilitation-Psychology. 1997 Win; Vol 42(4): 273-286

Second, the book described below addresses your topic, as well.

TI: Students with acquired brain injury: The school's response.
AU: Glang,-Ann(Ed);Singer,-George-H.-S.(Ed);Todis,-Bonnie (Ed)
PB: Baltimore, MD, USA: Paul H. Brookes Publishing Co. (1997). xvii, 400 pp.

DEAR PAT:I had a car wreck due to a seizure and I had a contra coup brain injury. Since I came home from the hospital I noticed that my smell and taste is not the way I remember them. I can't stand the smells of cooking food and other things. They smell and taste horrid! I have lost 40 pounds from 180 to 140. How long will this last and is it brain related?


PAT'S RESPONSE:It is very likely brain related. Although less common than many symptoms of brain injury such as memory problems or headaches, many persons with brain injury do report altered taste and smell. It also can occur with some forms of brain tumor or after brain surgery. As for how long it will last - it could get better gradually, or it could take longer or even be permanent. Like many things with brain injury, the rate and amount of recovery vary greatly. I know that doesn’t help much, but your physicians are really the only ones who can give you specific information about your prognosis. You might consider seeing a nutritionist if your weight loss continues. You need to maintain a certain caloric intake and balance of nutrients to be healthy. If eating is difficult, it will be important to make sure you are eating the right things to maintain your health. You may also consider eating foods with mild taste and smell. (Stay away from that Limburger cheese!)

DEAR PAT:My nephew sustained a severe brain injury three weeks ago. It seemed as if he was recovering but this has stopped. At the same time, he continually spikes high fevers. Could these fevers be deteriorating his recovery?


PAT'S RESPONSE:Fevers are the body’s way to fight infection. Talk to your nephew’s physicians about the source of the infections or if there is some other reason he has a fever. Infections can occur after a serious injury because the body’s immune system is weakened, or because bacteria enters the body through an open wound. Only three weeks after a severe brain injury is really too early to evaluate recovery. Ups and downs often occur. Keep supporting your nephew and remain optimistic. Don’t be shy about asking his doctors questions. They have the best understanding of his current medical situation and prognosis.


Here’s another e-mail from one of Pat’s fans!

Pat, I suffered a closed head injury five years ago. I am now studying speech pathology and plan to work with TBI victims. Although I do not have a question, I do want to say that you are right on the money on so much of your advice. I think it's great that you take the time to help people find an answer to so many questions. Because of people like you I beat the odds and have even been accepted to grad school five years after being told I would not return to college. Thanks for believing in us and taking the time to show the way. R.C.M

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