VIRGINIA COMMONWEALTH UNIVERSITY

NATIONAL RESOURCE CENTER
FOR TRAUMATIC BRAIN INJURY

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

Pat #8

DEAR PAT:

I am a high school student. A friend of mine, who is 18, sustained a serious brain injury in a skiing accident. I understand that he has made a good recovery and the biggest problem right now is his emotional functioning (he thinks all the nurses want a relationship with him). In the next few days I will be visiting him and I am wondering how I should approach this. What should I talk to him about? Thinking longer term, what can I do to help him in his recovery? Several of my other friends and I are going to the same college, which is where he had planned to attend -- should I expect him to join us? If not, what can I do to help this person not feel abandoned?

Pat's Response

You actually have posed an easy question. The best thing you can do to help your friend throughout his recovery is to be a consistently supportive presence in his life. While he is hospitalized, visit when you can. Even if a person is comatose, it can help to talk to him, let him touch his favorite teddy bear, let him smell his favorite lavender oil, play his favorite Puff Daddy tape. In other words, create an environment that gently stimulates his senses and reminds him of everyday life. This is comforting to someone in the hospital.

When your friend comes home from the hospital, he will face a difficult adjustment period as he reorients himself to his home, school, friends, etc. He may not be able to do some of the things he did before the injury (e.g., driving a car). He may feel and act different because his brain is different -- it has been injured so it will control his body in a new way. By visiting him regularly and just being yourself, you can help make the transition a little easier. Your friend may have lost the ability to do some things; he may lose friends that move on without him; he may lose opportunities he had counted on before the injury -- your enduring friendship will become one of the most important things in his life. By accepting the person he has become since the injury, you will help him accept himself and move forward.

So, to summarize, visit your friend, talk about yourself, ask him how he is doing, listen, don't be afraid to talk to him about the injury and how it has affected him, take him out with your other friends, help him set new goals for himself and support him in his endeavors. Lastly, keep reminding yourself and your friend that recovery from brain injury can take a long time; give him time to get better and try to stay positive.

Dear Pat
I have a question regarding my rights as an employee with epilepsy. I have myoclonic and complex/partial seizures. Every once in a while I have problems which keep me home from work. With my previous boss, I had an agreement for making up the time when I was out due to seizures. Now I have a new boss, so I discussed my situation with him to see if the same arrangement could be a possibility. He said he would think it over and a few weeks later called me into his office. The new boss said he had taken my question to senior management. I thought our original conversation had been confidential and I never gave him permission to discuss my situation with anyone else. Now senior management wants documentation from my neurologist. What are my rights and were any violated?

Pat's Response

You have several options, but the first thing you must do is establish what exactly went wrong. You "thought" your conversation was confidential, but did you ever specifically state to your boss that you preferred it be? Have you been denied a reasonable accommodation for your disability? If so, you may have a legitimate complaint.

Another critical first step is to collect any evidence to help prove your point (i.e., written information, letters, memos -- even your own dated, written account of events is useful).

Next, if your company has an internal grievance procedure, pursue that. The personnel department should be able to advise you.

You can contact your state's disability advocacy organization. Look in the telephone book government pages for something like: "Disability Rights Protection." Contact that agency and ask for information and advice.

The U.S. Department of Justice investigates claims of disability discrimination under the Americans with Disabilities Act (ADA). Write: Department of Justice, Civil Rights Division, Disability Rights Section, P.O. Box 66738, Washington, D.C. 20035-6738. Telephone: 1-800- 514-0301 ADA Homepage: http://www.usdoj.gov/crt/ada/adahom1.htm

The Dept. of Justice does a thorough investigation of complaints so it's worth a try if you feel you have a good case of denial of disability rights (e.g., access to public services, fairness in employment, etc). However, if you can work with your employer to resolve the situation, that is much better for both of you in the long run. Harmony can be preserved.

Dear Pat

As a very young child, my daughter sustained a skull fracture due to a fall. At the time, a CT scan and EEG showed normal results. Now my daughter is 6 years old. Having been diagnosed with Attention Deficit Disorder (ADD), she is on regular medication. Although she does well on the medicine, she and the rest of the family experience continuing frustrations. Did the skull fracture cause the ADD? Who might we contact for help?

Pat's Response

It would be helpful if you specified what the continuing frustrations are. Is your daughter sad most of the time? Is she having problems paying attention in class? Does she fight with siblings alot? Does the family need more information on the side effects of her medicine? Is the family unsure how to act when she gets angry?

A couple of factors which you mention make it imperative to identify specifically what the problems are. First: Attention Deficit Disorder (ADD) is not very well understood -- what exactly is the cause? what exactly are the symptoms? do children outgrow it? It's difficult to help your daughter when the diagnosis is this general; it describes the behavior but what about the etiology? Second: The long-term effects of brain injury in children are not predictable to any precise degree. Researchers have not identified a typical post-injury behavior pattern. However, uninhibited behavior, hyperactivity, and inattention are frequently reported problems. Perhaps your daughter's behavior is "normal" for someone experiencing the residual effects of brain injury (the effects of pediatric brain injury can show up years after the trauma, as your child grows and attempts to learn new skills).

The diagnosis of ADD may describe your daughter's behavior, and the medication may help, but do you fully understand why your daughter behaves the way she does? If you have more information, you can make better decisions about how to help her.

For specific information on your daughter's psychological assets and deficits, which will help your family and the school understand and support her, consider a pediatric neuropsychological evaluation. This will involve testing of her intellectual ability and behavioral tendencies, which will help guide you in creating a nurturing homelife and will help the teachers in creating a learning environment that works for her. For referral to a pediatric neuropsychologist, contact your state Brain Injury Association. If you need help doing this, contact the national Brain Injury Association at (703) 236-6000

(Reference: Waaland, P. (1990). Pediatric Traumatic Brain Injury. Rehabilitation Research and Training Center, MCV: Richmond, Virginia.)

Dear Pat

I sustained both a brain and spinal cord injury in 1996. I have poor balance and I walk to the left. Although my balance has improved with time, I wonder if my it will ever be restored.

Pat's Response

Balance disturbances have various etiologies and treatments; what works for some problems may not help others. You should consult your neurologist to pinpoint the cause of your balance problems. It probably will lie somewhere in your vestibular system, the body organs which control balance. Components of the vestibular system are located in the ear and the brain. So, irregularities in the brain and/or the ear can cause vestibular disorder, i.e, balance problems. In addition to your neurologist, you may need to see an ear specialist, known as an otologist.

Many vestibular disorders can be treated with drugs, therapy, surgery, and other interventions. There is no guarantee that a person with such a disorder can be cured. In cases where balance problems persist, compensatory strategies can be developed.

For more information, contact the Vestibular Disorders Association, P.O. Box 4467, Portland, OR 97208-4467; telephone: (503) 229-7705

(References: Office of Scientific and Health Reports, National Institute of Neurological and Communicative Disorders and Stroke. (1986). Dizziness: Hope Through Research. National Institutes of Health: Bethesda, Maryland.

Vestibular Disorders Association. (1993). Vestibular Disorders: What Are They? Vestibular Disorders Association: Portland, Oregon.)

Dear Pat

My 16-year-old son had a moderate brain injury about 18 months ago as the result of a car accident. He still struggles for word identification. Some words he appears unable to retrieve, no matter how hard he tries. These are words which he did not frequently use before the accident. Is this a learning impairment that he might overcome with repetition, or are there some words that may never become part of his vocabulary?

Pat's Response

Even though your son was injured over one year ago, he still can continue to make progress. It is worth the effort to assess his current problems and pursue treatments that may help. You can take the first step in this assessment and then consult the appropriate professional(s).

First step: Make a written record of the communication problems. Try to answer the following questions.

What words are problematic? Your current observations are very helpful -- he has trouble with words not used pre-injury. Your son is having difficulty partly because information learned prior to an injury may be easier to recall than information attempted post-injury.

Are there any clues to why he cannot say certain words? Is he receiving your message? That is, can he hear and understand what you are saying to him? If so, does he have the ability to express himself? For example, can he mentally retrieve words? physically speak the words? put them in a meaningful sentence?

Note the environments in which problems occur. Are there distractions in the environment? Is it too noisy? I someone making him nervous?

As you can see, communication involves complex cognitive and physical functions. Once you have gathered detailed information about your son's difficulties, you may wish to consult a speech language pathologist for an evaluation of your son and therapy recommendations. The speech language pathologist can advise your family with suggestions such as speaking only when facing your son, slowing down your rate of speech, simplifying your vocabulary, etc. If a hearing problem is suspected, an audiologist may be consulted.

(Reference: Blosser, J., DePompei, R. (1996). Crossing the Communication Bridge: Speech, Language and Brain Injury. Brain Injury Association, Inc.: Alexandria, Virginia.)

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