VIRGINIA COMMONWEALTH UNIVERSITY

NATIONAL RESOURCE CENTER
FOR TRAUMATIC BRAIN INJURY

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

Pat #14

DEAR PAT: I have written to you before and was very encouraged by what you wrote back. I had a CHI on July 30, 1998, and I'm still trying to figure things out. It's so hard for me to be around people that I don't know for fear that I may seem "strange" to them, etc. Even to be around people that I know, but have not seen me or spoken to me since the accident. I feel so on edge, afraid that they are looking for deficits, or just maybe trying to see what's different. So many people are not at all educated about brain injuries and think that anyone with a brain injury is instantly impaired, or has mental problems. That is true in some cases, but definitely not all. I've been through a lot since all of this happened, and I feel like I've come out of it wiser. I've noticed that the more hardships people have to go through, the more levelheaded they seem to be. Somehow, I have to get over this fear of being around new people. Half the time I feel like I need to explain what happened, when I truly know that it's not necessary. It's so hard to put these tense moments into words. How should I get over this?


PAT'S RESPONSE: I don’t think I’ve met a person with brain injury who didn’t feel this way to some extent. Figuring out what to tell people about an injury or even whether to tell people anything at all can be difficult. Loss of confidence and worrying about making a mistake are also common experiences of people after a brain injury. Many people who were previously comfortable around people become "shy" after the injury. They’re worried about what others think and about making a mistake that will let others know they are "weird."



Pat is glad to hear you already know that explanations aren’t necessary! Your injury is YOUR business. You do get to decide who to tell and who not to tell. Besides, a lot of the time the person who is most likely to notice "deficits" is the person with the brain injury! After all, everyone sometimes forgets things, seems distracted, is emotional, or can’t think of the right word. Obviously if your injury is more noticeable from your appearance, speech, or behavior, this can be more difficult to handle since people will wonder and many will ask. But one of the things about TBI is that the person often looks "healthy." (Although this can have drawbacks too since others may not be as sympathetic or understanding).

As for how to get over the anxiety, there are a few things to try. One is to practice these situations with a friend, family member or therapist. Are there particular types of situations that make you nervous? Are there questions you’re not sure how to answer? Is the flow of the conversation disrupted because of confusion or a memory problem? If you can rehearse these situations, you can build up confidence for life in the real situation. A therapist may be able to help you analyze what aspects of social situations make you uncomfortable and provide relaxation techniques to deal with anxiety. Finally, participation in a support group for brain injury may be helpful. I can guarantee if you go to a group, you will find others dealing with similar issues. Advice and feedback from someone who has been there is often the best thing.

DEAR PAT:My friend had an accident when he was 19. He was hit by a truck and his head was split open. He was pronounced legally dead but was brought back. They put his brain back in his head and sewed him up. They did some tests later on and informed him he only had about 6 years to live because his brain is deteriorating. Well, his 6 years are almost up. He never did any research or anything to find out about this so he doesn't really know if he can be helped. I'm sorry I don't have more info for you to go on. Do you think there is anything medical science can do? Can you tell me more about this condition? And if there is no hope please tell me what is going to happen so I can best be there for him. He just told me this so there's not much time left. Please help.


PAT'S RESPONSE:Pat really can’t tell too much about your friend’s situation from what you wrote. If your friend hasn’t kept up with follow-up medical exams, that is clearly your first step. Without knowing anything specific about your friend’s condition or what may have been causing "deterioration," I really can’t speculate on whether there is anything that can be done. The best thing you can do as his friend is to be sure he is seen by the appropriate doctors, educate yourself about his condition so you can advocate for his treatment, and continue to be the good friend you are. If you can find out any more information about what is causing deterioration, let me know and I will try to give you a more helpful response.

DEAR PAT: My brother sustained head injuries in a car accident on December 22 1998. Unfortunately he was very drunk at the time. It is now 7 months after his accident and he has very slurred speech and a lot of his memory had been wiped off. He cannot remember our sister’s wedding last summer. I am very close to my brother and would like to stimulate him when he is at home. What sort of things would you suggest that I do with him? Will playing scrabble and other board games merely frustrate him or will that help? Please advise.


PAT'S RESPONSE:Certainly it will help to keep your brother busy and playing games that involve memory or problem solving may be very helpful. If you brother is working with rehabilitation professionals, be sure to talk to them and get advice. They will know the details of your brother’s condition and have a sense for his strengths and weaknesses. Most importantly, talk to your brother. He is the only one who can tell you what does or does not frustrate him. Remember to be patient and don’t expect him to get his memory back right away. Depending on his injury, it’s also possible that he won’t ever remember those past events like your sister’s wedding. Keep spending time with him, and encourage him to follow-up regularly with his doctors and to stick to his rehabilitation plan.

DEAR PAT: My 8-year-old daughter was in a car accident about 1 month ago. She had a subdural hematoma with a little bleeding on the brain, but no swelling. The doctors tell us for only being 1 month out of the accident she is doing great. I need to know what I need to look for in the future. Right now she is out of the hospital and in an outpatient rehabilitation center. Can you give me any advise on therapy for at home? Prior to this accident she was an out standing student and we are concerned about her future in school. Any advice would be helpful.


PAT'S RESPONSE:Pat recommends having your daughter evaluated by a neuropsychologist before the school year begins. This will serve as a baseline so you can measure her recovery over time. A neuropsychological evaluation can also help you to evaluate her current strengths and weaknesses and identify any areas that might lead to academic problems. If necessary, the neuropsychologist can help you to work with the school to develop an individual educational plan for your daughter.



With only one month post-injury, probably the best thing you can do for your daughter is to give her a lot of love and reassurance. Most recovery takes place in the first six months post-injury. Don’t expect a 100% recovery by next week or even next month. Keep her involved with rehabilitation and make sure all of the doctors’ recommendations are followed. In terms of specific strategies, I can’t really give any more advice without knowing what areas you are concerned about (attention, memory, behavior, etc.). Good luck. I’ll be hoping your daughter makes a good recovery.

DEAR PAT: My brother had an accident in 1985 when he was run over by a camper type of pickup truck. As a result of this accident, when he was 18 years old, he has lost the use of his left eye, lost most of the use of his right hand, he has a "drop foot", and he tends to think that things happen which, in reality, do not. He seems to feel that he must always prove himself to everyone he comes in contact with, even stating that he tells the governor how to run the state and that the governor takes and uses his advise. He has also become an alcoholic and this amplifies his problems. He has been to several short and long-term programs for alcohol abuse, which seem to help for very short periods of time. He is not able to maintain a job, mostly because he has trouble dealing with people. Through the state welfare program he lives on his own, but this seems to be difficult for him at times because he does not interact with positive role models or peers. We have a large family, all of whom try to offer support and assistance, but he does not seek our help except when he "goes off the deep end". During these times he admits that he needs help, until he has had company for a while. If we offer help when he does not seek it, he becomes defensive and says that we are trying to run his life. Last night he called for help and when my sister, her ex-husband and I responded to his apartment, he was almost like a child who finally got the attention he craved. We talked and together we (he was included in the discussion) decided that he should go to the hospital to talk to a professional about his problems. However, when we got there, he refused to allow the counselor to help him. I realize that he is probably afraid to go to another program because he is not entirely sure that he wants to live the rest of his life without alcohol. He said that he would quit drinking on his own because he "knows that he has to". We finally convinced him to try one more time and he agreed to go to a four-day detox program (inpatient) which he will begin on Monday. My sister and I (along with the counselor) think that the alcohol abuse is secondary to his TBI, but we do not know of any local programs to consider. If you have any suggestions on how we can locate programs for someone with fourteen years of no help with a TBI or anything else we can do, we would be very grateful.


PAT'S RESPONSE:Well, you certainly have a complicated case! So you get an extra-long answer! Unfortunately substance abuse and traumatic brain injury often go together. This is usually because either the person was injured as a result of alcohol or drug use or because the person uses alcohol or drugs to cope with post-injury changes and stress. I believe you have chosen the correct place to start - which is the treatment of the substance abuse. Alcohol often exacerbates or masks other problems and without treatment for his alcohol use, any other mental health treatment (psychotherapy, drug therapies) will have little chance at success. The problem is that most alcohol treatment programs have very little experience working with persons with TBI. Issues related to the brain injury such as adjusting to a disability, behavior problems, memory problems or other neurologically based symptoms will probably not be adequately addressed.



Another concern that your letter brings up is the quality of your brother’s thinking. If he really believes that things happen that haven’t - like giving advice to the governor, this sounds like he may have some psychotic features such as delusional thinking. Even if he is just "telling tall tales" that he knows to be false, this will clearly be problematic in most social relationships. The problem sounds like it may go beyond just alcohol abuse.

In other words, your brother needs three major areas addressed: 1) The consequences of his TBI on his cognitive, emotional and behavioral skills 2) His alcohol abuse and 3) The possibility of a thought disorder or delusional thinking.

As I said, you have already made a good start by helping him to enroll in an alcohol treatment facility. The next step will be to find someone who can do a comprehensive evaluation of your brother and make treatment recommendations. I would suggest looking for a facility such as a university-affiliated hospital or psychiatric hospital that can provide neuropsychological testing, as well as a psychiatric evaluation. Neuropsychological testing can help to evaluate your brother’s cognitive and emotional skills. The psychiatric evaluation is to determine if your brother would benefit from medication. If you can find a facility that can do both, this would be best since both treatment providers would be in the same place and likely would be able to work together. If you can’t find such a place, try to identify a neuropsychologist and psychiatrist and obtain independent evaluations from each. I believe that it is important in complex cases to have a comprehensive evaluation that can be used to guide treatment and provide understanding and recommendations to the patient as well as family members.

Finally, dealing with a family member who has serious mental health or substance abuse problems (or both) is very hard on the family. It affects the quality of life of everyone involved. Many family members are torn between wanting to help their loved one and needing to manage their own busy lives. In addition, the person needing help may not always follow through with treatment and may seem unappreciative. It may be helpful for you to have a family meeting to discuss options for helping your brother. Because you’re dealing with a very complex set of issues, I believe you, your sister, and other family members may benefit from consultation with a psychologist or psychiatrist to develop a plan for dealing with your brother and working on how to respond to when he has a "crisis."

DEAR PAT: Hi, My son is currently 5 months old. He suffered hypoxic injury and cardiac arrest at birth. It took the neonatologist 10 minutes to bring him back to life. Needless to say, they (docs) thought he would have severe TBI. My son has surprised us all by being very alert and appropriate on a cognitive level for his age, however, is suffering from motor delay and possible seizures (video EEG results are currently being reviewed). His first MRI revealed possible basal ganglial damage; his second MRI was negative for injury. Two different MDs read the MRI's and thus I feel this accounts for the difference in findings. My question is what are the detailed responsibilities of the basal ganglia and what clinical symptoms do you see with injury? (athetoid and choreic movements-please define).


PAT'S RESPONSE:The basal ganglia are really several brain structures including the caudate nucleus and the putamen. These structures are involved in the control of both voluntary and autonomic movements. Damage to the basal ganglia most often result in movement disorders, although problems also can arise related to some aspects of attention, memory, learning, or speech production. The specific effects of injury to the basal ganglia will vary depending on the specific site of damage and the extent of damage. Cerebral Palsy (a term referring to a neurologic disorder affecting body movement and muscle coordination) can result from hypoxic or anoxic injury to the basal ganglia during the birth process. Cerebral Palsy is not progressive and must be distinguished from other progressive or genetic neurological conditions. It sounds like you are seeking good medical advice. Continue to be sure your son is followed closely by medical professionals so they can make an early determination if your son has CP or any other motor disorder.



Athetoid Movement - An impairment of the muscle tone (usually in large muscle groups), causing slow, involuntary contractions of the head, limbs, trunk, or neck.

Chorea - A condition of uncontrolled, purposeless, rapid motions that interrupt normal movement.

For more information on cerebral palsy try the following link:

http://www.bissells.com/cp.htm

DEAR PAT:I think what you’re doing here is a wonderful thing. I'm 16 years old and my boyfriend was in a car accident a week ago and in a coma for three days. He has now come out of ICU and he can have visitors. I love to go see him, because he is always so happy to see me. He had some major brain trauma, and is acting like he is 6. I'm not mad at him at all or anything of the sort. I've just become very impatient with this whole waiting process. I've never led onto him that I'm impatient but I can't eat, I can't sleep, and my mind is some where else at work. I would never think about moving on with him in this condition. We were close before his injury, almost too close at 16 sometimes. Could you please tell me how long it usually takes some one to recover and if will ever be the same? If not, what are the chances he will never be the same?


PAT'S RESPONSE:If your boyfriend was in a coma for three days, he likely had a pretty serious injury. If he had "major brain trauma" there is a good bet his recovery process is likely to take a considerable amount of time and rehabilitation. As for whether he will ever be "the same" - Most people have lingering effects of a serious brain injury. Those effects can range from permanent serious disability, to personality change, to memory problems, or in some cases only minor difficulties. It may be that your boyfriend will have essentially the same personality and act the same, but have some minor problems with attention or memory. It may be that he is a very different person both as a result of his injury and the psychological and emotional impact of having sustained a very serious injury and a near-death experience. Only time will tell. Your boyfriend’s doctors are probably the best source of information about his prognosis. Don’t be shy about asking questions.



The main thing is improvement in most cases after a serious brain injury will occur over months, not days. Don’t expect him to "be the same" tomorrow, next week, or even next month. Having someone you care about seriously injured is also hard on you. You might experience feelings of wanting to move on with your life, but feel guilty about breaking up with someone with an injury. You might just want things to get back to "normal" even though that might not be possible – at least for a long time. Talk to your family and friends about how you feel. Consider talking to a counselor – your school probably has a counselor or school psychologist you could talk to for free (At least when school starts). Be patient, show your care and support, and ask his doctors about his condition and prognosis.

DEAR PAT:I am new to the site, looking for information. When I was nine (I Am 37) I suffered a massive head trauma to the back of my skull on the left (near center) part of my head... I was struck by a falling bolder in a Hiking accident... It broke the skull and the bone was pressing down on the skull... It took quite a while to get down off the mountain and I spent 3 days in a coma and the surgeon told my parents I was going to die. He reconstructed the bone and stitched me up and you know I woke up! Now I have never had follow up tests, but I am a real slow reader and I can not type with out looking at the keyboard (and then I am REAL Slow) Often getting letters out of order in words... I have never been able to match Music Notes to finger positions, even though I can play a few instruments by ear, and can read Music... or at least used to try... I have had difficulty with dyslexia my whole life... I cannot remember most people’s names or phone numbers (even the ones I call a lot.) I am an artist and very "right-brained" I wonder if there are programs in my area that might evaluate my damage and perhaps take me on as a patient. I am also interested in possibly participating in Human research projects that might help re-stimulate my damaged memory centers, or even might be interested in using my existing damage to get around the FED limitations to working on "Healthy" tissue. I know this might seem like a lot to ask about, but my request is sincere and I am not having much luck connecting to anywhere.


PAT'S RESPONSE:Are there programs in your area that might evaluate your "damage" or take you on as a patient? In terms of an evaluation, you could certainly arrange to have neuro-imaging done to look for any structural anomalies in the brain. You could also have a neuropsychological evaluation to look at your cognitive strengths and weaknesses. Any rehabilitation program working with people with brain injury should be able to perform these services or refer you to someone who does. Ask your primary care physician for help in finding the resources in your area. As for taking you on as a patient – that would depend entirely on what you might need help with.



I’m afraid I can’t give you much guidance as far as participating in research. That would depend on what kinds of research projects might be run at hospitals or universities near you. The fact that your injury occurred so long ago and occurred while you were a child may also limit how many research studies you could be included in.

DEAR PAT:I read your response to my brother Rusty. He’s in Tierr hospital and is doing O.L. It’s a really great hospital. I think they will help him with a lot with different things. They’re giving him botox shots to help the spasticity in his body it seems to be helping already with his eating. Do you know anything about the botox shots that may help him? He tells us that he feels lonely and lost and that he has lost at life. We asked the doctors to give him Prozac to help with the depression. Mostly he wants and tries to be the way he was. This is a terrible thing to be alive when you can’t function normally. He’s just a shell of what he once was. Its so hard to look at a relative day in day out for weeks and months hoping they come back to have some kind of normal life. Sometimes you wonder why they’ve even lived through this. We’re thankful for his life because some part of him is better than nothing at all, but I know that my brother would not want to stay like he is forever. But I guess there’s no way to tell who’s going to make it. No one should have to experience these things. The saddest part of this whole thing is that people won’t know what kind of person he was or what he had accomplished before this happened.


PAT'S RESPONSE:Botox is a substance produced by a bacteria that blocks the messages between the nerve and the muscle. Interestingly, it’s from a bacteria that in large quantities causes food poisoning! However, this substance allows over-active muscles to relax and return to a more normal state. You mention that your brother is just a "shell" of what he once was – but it sounds like he’s able to communicate and still has his same basic personality. Your brother may have limitations to what he can do, but he sounds like he’s got the kind of love and support from his family that people need to survive this type of tragedy and still live a meaningful life. I’m glad you’re happier with his treatment now, and I’ll be hoping your brother continues to make good progress.

DEAR PAT:I'm a survivor of a six-month coma that was my third near death situation. It's made me a 40-year-old 100% disabled veteran. In my fight for recovery I've come up with the need to get back in shape. Now I'm trying to find out what needs to be got in shape in my head and if there are any mental exercises too. Any guidance will help!


PAT'S RESPONSE:Try the following webpage. This article contains a lot of ideas for ways to "exercise" your brain! And try not to have any more near "near death" situations! Only cats have 9 lives!



http://www.healthgate.com/healthy/man/1998/braingames/index.shtml

DEAR PAT: My husband and I were discussing a segment we saw on 60 Minutes (within the last year or so) about a treatment to head/brain injury (I believe closed head trauma) administered immediately following the trauma - the doctor was from a New York hospital I believe. If I recall correctly, the treatment was opposite from what was traditionally administered in the first 24 or 48 hours following the trauma; immediate reduction of the swelling was not encouraged . . . We would like the name of the doctor and the treatment. Can you recommend how to find out which hospital performs this treatment? Anyway, sketchy info - any help would be appreciated.


PAT'S RESPONSE:Ummm… Well it looks like someone finally stumped Pat!!! If there were a prize for that, you’d win it!



My only suggestion is to contact 60 minutes. Those news magazine shows are always happy to provide you copies of tapes and transcripts, so you might try contacting them. The contact information for 60 minutes follows:

Address:
60 Minutes
524 West 57th St.
New York, New York 10019

Phone:
(212) 975-3247

To order a transcript, call:
(800) 777-TEXT

To order a videotape, call:
(800) 848-3256

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