DEAR PAT: Six weeks ago my son was in a boat accident. His two friends were killed and he received severe brain trauma and other physical injuries. There were questions as to whether he would live. He did, and he opened his eye approximately 1 1/2 weeks later. We were told that if he lived, he would have little quality to his life. Two weeks ago my son was transferred to a skilled nursing care facility. We were told he would be able to transfer to a rehab program in 2 to 4 weeks. He made it in 12 days. My son is coming along physically though there is permanent physical damage. He repeats things, and has made some comments on his own. We are told he is now in stage 4 of six stages. He has become very agitated. I could tell when I talked to my daughter-in-law last night that she is very stressed. She is only 26 and has much to deal with. My questions is, what is this stage four? Can my son become stuck in it and never make further progress? What is the next step after this aggressive stage? One thing I have learned is that the only thing certain about brain injury is that nothing is certain. This makes it very difficult to ask questions because I have been told doctors give the worst scenario so that family won't be disappointed. I've also noticed that the SICU perspective and the rehab perspective is different. It was the doctor at SICU that was so negative about my son's recovery prospects. I'm so happy to find this site. This situation breeds loneliness and isolation. I must put on a happy face for the benefit of elderly parents, etc. Thanks so much.
PAT'S RESPONSE: Boating accidents are an increasingly common problem and I'm sorry to hear about your son's tragedy. I doubt the doctors were intentionally providing the "worst scenario." However, they do want to provide a realistic picture of a person's risks. Sometimes people beat the odds, but the doctors need to be honest and tell patients and family members when the odds aren't good. In your case, it sounds like your son is doing better than expected.
I'm not sure which "stages" you are referring to. People have come up with several ways to rate recovery from coma or traumatic brain injury. One of the most commonly used scales is the Rancho scale which includes eight stages.
Understanding the eight Rancho Levels can be helpful to track patients following traumatic brain injury. The levels and descriptions are listed below. Keep in mind that some people may plateau at a certain level and there is no way to accurately predict how fast someone will progress or where they may plateau.
The Rancho levels:
I. No Response
Patient appears to be in a deep sleep and is unresponsive to stimuli.
II. Generalized Response
Patient reacts inconsistently and non-purposefully to stimuli in a non-specific manner. Reflexes are limited and often the same, regardless of stimuli presented.
III. Localized Response
Patient responses are specific but inconsistent, and are directly related to the type of stimulus presented, such as turning head toward a sound or focusing on a presented object. He or she may follow Simple commands in an inconsistent and delayed manner.
The patient is in a heightened state of activity and severely confused, disoriented, and unaware of present events. Behavior is frequently bizarre and inappropriate to his immediate environment. Patients are unable to perform self-care. If not physically disabled, they may perform automatic motor activities such as sitting, reaching and walking as part of the agitated state, but not necessarily as a purposeful act.
V. Confused-Inappropriate, Non-Agitated
Patient appears alert and responds to simple commands. More complex commands, however, produce responses that are non-purposeful and random. The patient may show some agitated behavior, but it is in response to external stimuli rather than confusion or distress. The patient is highly distractible and generally has difficulty in learning new information. He or she can manage self-care activities with assistance. Memory is impaired and verbalization is often inappropriate.
Patients show goal-directed behavior, but rely on cues for direction. They can relearn old skills such as activities of daily living, but memory problems interfere with new learning. Awareness of self or others begins to re-emerge.
VII. Automatic Appropriate
The patient goes through a daily routine automatically, but this is robot-like with appropriate behavior. He or she will have some recall of activities and superficial awareness of his or her condition. The patient requires at least minimal supervision because judgment, problem solving, and planning skills are impaired.
VIII. Purposeful - Appropriate
Patient is alert and oriented, and is able to recall and integrate past and recent events. He or she can learn new activities and continue in home and living skills, though deficits in stress tolerance, judgment, abstract reasoning, social, emotional, and intellectual capacities may persist.
DEAR PAT: Two and a half years ago, my best friend from childhood sustained a severe brain injury to her brainstem. All of her motor skills were affected and although she has been in Rehab for the past two and a half years, her Rehab team decided to stop therapy for a while due to a plateau in her recovery. As with all brainstem injuries, her motor skills were affected. She has no use of her left arm, and her right arm has significant tremors, interfering with functional tasks. She has made significant gains in her trunk and legs, however, her goal of walking has not been obtained (yet). Her speech was also significantly impaired, but she does speak and can communicate her needs. The remarkable thing throughout all of this, is that her mental status and intelligence were hardly affected by her injury. She has minimal short-term memory loss, and she does process things slower than usual. My question to you is, now that therapy has decided to take a break, do you have any suggestions of other activities or treatment strategies that the family could look into? Any info would be very helpful. I would hate to see a healthy mind and healing body be forgotten in the midst of health care that wants immediate results. Her family is very involved and willing to try anything.
PAT'S RESPONSE: I'm glad to hear your friend has so many people that care and show her love and support. Probably one of the best things you can do is to continue to be such a great friend - social support and companionship are very helpful. As for continued rehabilitation, it may be helpful, but based on the length of time post-injury, improvements will likely be slow and gradual. Some people find that persons with balance or motor problems can build strength by exercising in a swimming pool (although consult with her physician first!). Playing video or board games that emphasize memory and/or motor skills can be helpful and fun. Talk with her physician and/or a physical therapist about activities that will help to build strength and maintain good health.
The best thing to do now is to focus on your friend's strengths. From what you wrote, she has made tremendous progress over the past 2-1/2 years! Encourage her to set goals and to develop her interests and hobbies. Work with her to identify things she can do and enjoys doing. What can she do to help her feel more involved and productive? Since you say she communicates well, talk with her about what she would like to do. What future goals does she have? How can those goals be achieved? Let your friend guide you into what activities she would like. With friends like you, I know she's in good hands.
DEAR PAT: My son's Social Security Disability was cancelled 3 years ago because they state he is able to work. However, he has not been able to secure a job on his own and what work he has had was through employment agencies. Even though these are supposed to be open to full time employment at the job sites, he is always told he is no longer needed. The longest he was kept was 10 days. He always works when told to report but I suppose he is inappropriate in someway. We need advise in securing SSI or other financial support. He wants and needs to be independent.
1. Talk with his physician about his condition and prognosis. In order to qualify for SSDI, you will need a doctor to describe the patient's problems and state that he is unable to work.
2. Talk to your son or his former employers. Finding out why he cannot hold a job is essential for determining if this is due to a disability, behavior problem, or some other reason.
3. Investigate the possibility of having your son evaluated by a psychologist, psychiatrist, or neuropsychologist. Documenting behavior problems may help to qualify for SSDI - but more importantly may suggest some treatment options to help him improve his behavior and allow him to keep a job.
4. Contact your state's Department of Rehabilitative Services. Most of these programs include return-to-work training and supportive employment services to help people successfully re-enter the work force. Perhaps they can suggest some programs that may be able to help your son.
5. Contact your state's chapter of the Brain Injury Association and ask if they have any information to assist people in your son's situation. Also, you may find some useful advice in the FAQ section of this website.
DEAR PAT: My 26-year-old son was involved in a motor vehicle accident on 11/7/99. He was rear-ended while at a complete stop and suffered a serious head injury that required over a dozen stitches. Since that time he has had many ailments, headaches, huge swollen glands, viral attacks, but the latest is the most upsetting. He is experiencing severe joint pain. It started in his left ankle, then his right, both knees, now his right wrist and elbow. When he awakens, he can not walk or function until he has taken aspirin or pain medication. He has seen a neurologist who says all is well. Now he is scheduled to see a rheumatologist since my family doctor thinks he has rheumatoid arthritis. I think this is trauma related and here is why. Prior to the accident, Jeff was running 10 to 20 miles daily. He held two jobs, one at a fitness center where he was a licensed personal trainer, certified spinning instructor, etc. The other job is as a track coach at a private boys' school. He had been training seriously for the Boston Marathon for over a year and had planned to compete in the Philadelphia marathon on November, 1999. He has lost his job at the gym since he is unable to perform. He is becoming very depressed as am I since I can not seem to help him in any way. I do believe that this is related to the accident and/or head trauma. Do you have any similar case histories or anywhere to direct me for help? Thank you for your time.
PAT'S RESPONSE: Hm... Sounds like a complex case. I'm not sure I can be of very much help since arthritis and diagnosis of joint pain are not within my area of expertise. I can tell you that it is more common to have musculo-skeletal pain after a traumatic injury - such as pain in the muscles of the neck and back.
Keep in mind that just because two things occur at about the same time doesn't mean that one caused the other. In other words, if he developed arthritis, it could have been independent of his accident and only a coincidence. Below is a link to a site with LOTS of links and information about arthritis. You can read about suspected causes of arthritis (including the possibility of infections or genetic factors) as well as current research and treatments.
DEAR PAT: My son of 16 1/2 months died of a traumatic head injury. His whole brain was swollen and the cause of death was subdural hematoma, cerebral edema, and blunt impact to the brain. I was not home with my child. My husband was home and is now in jail. I can not put my son's death to rest because I do not know how any of this happened. The prosecutors told me it was from slamming or shaking. My husband told me he fell out of the crib and later on fell off the couch. I don't know what to think. I miss my little boy and little boys of his age shouldn't have this happen to them, they are so pure. Is there any information you can give me that might ease my mind on what might have happened?
PAT'S RESPONSE: I'm sorry for your loss. Nothing is more tragic and heartbreaking than the death of a child. Unfortunately, I'm afraid I can't ease your mind very much. It is questionable that those types of injuries would occur from the minor falls your husband described. Even if he is telling the truth, one has to consider whether your son was being properly monitored by adults if he can sustain two serious falls within a short period of time. However, this may also be a case of child abuse or Shaken Baby Syndrome. The doctors that examined your child should be able to determine if his injuries are consistent with falling. Injuries from child abuse are usually quite different from those sustained "accidentally" and the medical evidence will probably hold the answer to your questions. Please see Pat Column #11 for more detail on Shaken Baby Syndrome (Click the "Archives" link at the bottom of this page).
DEAR PAT: My grandfather recently experienced a massive hemorrhagic stroke, from which the doctors predicted that he would not survive. He was in a coma for almost two weeks and much to everyone's surprise "woke up" one day. He was transferred to an acute care traumatic brain injury cognitive rehab in New York and has made great progress. At this point, he is able to recognize family and friends, nod yes or no to questions and even attempt to speak. He needs cognitive, physical, occupational and speech therapy. He is going to be discharged from the acute care facility and we were advised to find a long-term care traumatic brain injury certified facility to have him transferred to. I have done some exploring for facilities in New York and New Jersey but seem to have hit roadblocks with each potential facility I find. Is there a resource I can use for a listing of appropriate and available facilities in the area. Thank you very much for your help.
PAT'S RESPONSE: It's not clear to me if you are looking for a rehabilitation hospital. This is a medical facility that will provide rehabilitative therapies such as physical, occupational, and speech therapy. If this is what you are looking for, please see the answer to the next question.
On the other hand, if by "long-term" you are looking more for residential facility that can also provide medical care, you may want to explore the following websites:
This is a website with long-term care information for New Jersey. It contains a locator for long-term care sites in the state.
A similar site for New York
This is the website for a national organization of long-term health care facilities.
DEAR PAT: My brother is 45, 4 years post-injury. He is in a 1/2-day outpatient program for the past 3 years. This has been great, but I feel that he needs much more at this point in time. The usual resources (voc. rehab) have not had much else to offer. Are there any intensive in-patient rehab facilities in the eastern U.S. for people that are a few years post-injury, that concentrate on vocational issues and moving past the "typical" outpatient rehab services?
PAT'S RESPONSE: It's very unusual for a person to be admitted to an inpatient facility several years after discharge without some type of deterioration. Certainly if you can afford the costs, you can probably find a facility willing to admit your brother and provide intensive services. However, keep in mind that 4 years post-injury, further improvement is likely to be gradual. In addition, it is unclear whether a person will actually benefit from intensive therapies that many years post-injury. In some cases, too much therapy can leave patients stressed and fatigued, possibly even slowing further recovery. My advice is to talk these issues over with your brother and other family members. If your brother agrees that he would like more intensive therapy on an inpatient basis, you may want to investigate full-day treatment programs or having in-home therapies before you consider the very expensive option of an inpatient placement.
As for locating rehabilitation facilities, the following links may be helpful -
A checklist of questions to ask when looking for a Rehabilitation Center
A listing of some rehabilitation sites in the United States (This is far from exhaustive, but might be a good starting point).
Rehabilitation facilities should be accredited by either CARF or JCAHO (but not necessarily both).
To check on a facility's accreditation with JCAHO, visit their website at:
For a list of CARF accredited rehabilitation facilities, contact CARF at:
4891 E. Grant Road
Tucson, AZ 85712
Voice/TDD (520) 325-1044
Fax (520) 318-1129
DEAR PAT: After a person has been injured in a car accident and suffers a traumatic brain injury, who determines they are "of sound mind" to sign any kind of legal papers? To ask for a divorce? When is that determined? At what point is it discussed? I'm referring to my brother who suffered a closed head TBI nine months ago. He has been home from the hospital for five months and his wife treats him with zero respect. She constantly talks down to him and I'm afraid of how she treats him when I'm not around. He begs me to take him away from her. I don't know what to do. I think he is "of sound mind" now. Thank you for your excellent work. I don't know how I would have survived without you during these last few months.
PAT'S RESPONSE: You need a sound mind to get divorced? You sure don't need one to get married! Actually, you are asking a legal question. You should consult an attorney for more specific information and I can only make general comments. Decisions about someone's competence for making legal decisions (like divorce) would likely be made by a judge, although judges often decide to follow the guidance of a medical or mental health professional who may do an evaluation. Competency is usually task specific. That means that you are neither "competent" nor "incompetent." Instead, you may be competent to do some things, but not others. For example, a person could have the capacity to decide his or her medical care, but not to make financial decisions. It sounds weird, but people could have a deficit in a specific area (like math or reading) that would affect their ability to make some kinds of decisions but not others. In most cases, the individual determining "competence" will attempt to determine if the person understands the issues and alternatives in making a decision for that specific issue (in your brother's case, divorce).
Probably the place to start is simply for you or your brother to make a phone call to a divorce attorney. He or she will be able to guide you through the laws and procedures of initiating divorce in your state. It may be that competency will not even be an issue if either your brother's wife agrees to the divorce, or if your brother is capable of making an informed decision.
A final note. If you believe that "zero respect" crosses the line into verbal or physical abuse, there are other avenues to pursue. Spousal abuse is against the law regardless of gender. Contact an attorney or social services for more assistance.
DEAR PAT: My husband had a traumatic brain injury in 1996. He has responded very well to therapy. He walks with a walker, speech is somewhat impaired, however, we can understand him. He is still incontinent and gets very frustrated about this. Is there something that we can try to help this situation?
PAT'S RESPONSE: Incontinence is a frustrating and embarrassing problem. Your husband should consult his physician to determine the cause of the incontinence (for example, is it due to lack of muscle control, lack of sensation, or some other reason). Your physician may be able to recommend some medications that can help. There are millions of Americans who suffer from incontinence, and many use adult diapers or protective underwear to help with this problem. Try to be supportive and understanding. Ask your husband's doctor to talk with him about this problem. Counseling may help him to deal with his frustration and to understand that incontinence is a very common difficulty affecting millions of Americans.
DEAR PAT: I'm glad to see so many people being able to ask you for help, but I didn't see many about TBI in children... Do you know of an educational program or summer camp or something specifically for head injured children?
PAT'S RESPONSE: There are rehabilitation programs specifically for children with brain injury. Programs and support groups may be available through a local children's hospital. Call and find out if they offer any outpatient programs for children with brain injury or if they can refer you to someone who does. You can also contact the Brain Injury Association and ask for help locating resources.
If you've read Pat's column before, you know that existing programs for "special needs" children (e.g. learning disability) can sometimes be modified in a way to assist a child with brain injury. Talk to people involved with these groups in your community and find out if they can be modified to assist a child with brain injury.
The Brain Injury Association
105 North Alfred Street
Alexandria, VA 22314
Phone: 703-236-6000 Fax: 703-236-6001
DEAR PAT: My brother died from anoxia due to an accident last year after living in a vegetative state for 3 months. Although at first in an ER, he was later transferred to a long-term care facility. I was shocked to see how many young people were there. My questions arise out of sheer curiosity: how many young adults nationwide live in a persistent vegetative state? what percent of them recover? How many facilities exist nationwide that care for young adults in vegetative state?
PAT'S RESPONSE: These are excellent questions. Estimates I have seen indicate that between 10,000-25,000 people exist in a vegetative state in the United States. Exact numbers are hard to determine because of disagreement about diagnosis, the relative rarity of the condition, and the fact that people with brain injury may "progress" out of a vegetative state. I am unaware of any statistics on the number of facilities that care for patients in a "vegetative state." Partly, this would depend upon whether you included trauma hospitals, or whether you are only considering long-term facilities of patients in persistent vegetative states.
For more information (probably more than you really want) - check out this website:
DEAR PAT: My 18 year old sister was involved in a serious car accident on December 21, 1999 and sustained serious head injuries. She was not breathing on arrival at hospital and was put on life support for 2 days. Three weeks down the track she still has Post-Traumatic amnesia, but not seriously. She can remember most things long term, although without a lot of emotion as we lost our mother in a car accident in October 99. She is still in rehab now although insists stubbornly all the time that she wants to go home, and has to go back to work. I feel that she used work as a means to cope with mums death but what the family is finding difficult is that before the accident she was a loving, caring person but now she doesn't care how others feel, ignores visitors and constantly tells us that no-one visits. She says that we are just family and have to be there even though we have been with her everyday, with a loss of money and time etc. I love her dearly and am at a loss as to how to find the sister she was. Is there anything I can do apart from going crazy?
PAT'S RESPONSE: Well, please don't go crazy. That won't help anyone. Probably the most important thing to remember is that your sister's brain injury is probably affecting her behavior. Neurophysiological changes after injury can results in symptoms such as difficulty controlling emotions (or showing no emotion), altered perceptions, difficulty with memory, or distorted sense of time. For example, even though you visited yesterday, it may seem like a much longer time to her. In addition, she has had a serious, traumatic event and this can cause a strong emotional reaction. She is likely reacting to her trauma, wondering about her future, and frightened that her life may never again be "normal." Also, she may be grieving now both for your mother and for parts of herself she's afraid are gone. Try to remember not to take the behavior personally, and just remember that this is a normal part of her injury. Also, if she was just injured on December 21, 1999, she has a VERY recent injury. Brain injury recovery is a long-term process, and it is unrealistic to expect her "back to normal" in just a few weeks. Be patient and give it some time.
Pat has one last piece of advice! Don't expect your sister to be grateful for your "lost time and money." Being a member of a family is sometimes about making sacrifices. Just ask yourself if your sister would do the same for you if roles were reversed. From what you describe about her before the injury, it sounds like she would.
DEAR PAT: I have a niece, 18 years old, who lives in Cali, Colombia. Last October she was in a very bad car accident, and was in a coma for over 2 months. She woke up 4 weeks ago. Her recovery so far has been extraordinary, she can walk with help, can talk, and understand things pretty well, she has no short memory, and has some tremors in the left hand and head, she takes medication for it. I was very glad to see your site as I will e-mail my sister so she can access it too. A question I have is this, In Colombia they have no access to any rehabilitation centers or programs as we do in the States. She has been told to come to the States for further help. (She received physical therapy, and they have consulted with various specialists.) All recommend for her to come here. Because they don't have insurance, all have to be pay by cash, my sister is not rich, but the prizes for the services in the States are astronomical. Do you know of any organization, or entity that could help with some financial assistance? I want to thank you for the help you have given and the amount of information this web site offers.
PAT'S RESPONSE:I would start by contacting the Brain Injury Association and asking if they have any ideas or if they can offer some help. Try contacting charity organizations such as the Red Cross, United Way, or religious organizations to see if they might be willing to provide funds. States have provisions for indigent care, so you might find out if your niece would qualify in your state (contact a state funded hospital - such as a teaching hospital at a University). You might also ask your own religious group (church, temple) for help. I wish I could give you better advice. I hope things work out for her!
DEAR PAT: My son had a car accident in Aug of 1994. He has a Traumatic Brain Injury with short-term memory loss and a speech deficit. We are trying to find him a job and the Department of Rehabilitative Services has been very helpful, but we are hitting brick walls right now. As soon as an employer finds out he has a deficit they say, "We'll call you!" We live in Chester, Virginia and I am trying to find a place where he can get out and see other people other than our family! Do you know of anyone available in the area or who I can ask in the area? Thank you for your help!
PAT'S RESPONSE: Pat has several ideas for you! A visit to a chapter of the Brain Injury Association of Virginia (in Richmond, 355-5748) can be a helpful source of support and education. There are also brain injury support groups in the Richmond, Virginia area. The Brain Injury Association will be able to provide you with contact information (I know there are groups that meet at Sheltering Arms Rehabilitation Hospital in Richmond). If you believe individual and/or family counseling might help, you could try contacting the Department of Physical Medicine and Rehabilitation at VCU at 828-9055 (They maintain this website). They offer counseling services on an outpatient basis and have experiencing in working with people struggling with return-to-work issues.
DEAR PAT: I have made friends with some people who have brain injury and live in a nursing home. The home is privately owned and for profit. Staff turnover is non-stop, and it appears that the residents, who are confined to one hallway with a locked door, are not getting opportunities for community integration and vocational services. What can I do? I volunteer at the home and have become friends with many of the residents. They tell me that they feel trapped, that they would like to move out in an assisted living situation, and that they would like to work and get out in the community more often. The case managers seem uninformed regarding the opportunities and when I inquire, they tell me that I can not meddle due to confidentiality issues. However, the residents have trouble remembering to ask questions and advocate for themselves. Many of them do not have any concerned family member involved. I am really frustrated and I want to help, but I don't know where to go for the help!
PAT'S RESPONSE: You sound like a really good person who is trying to give to others. And you work for free? Can we clone you?
One thing you could look into is whether you could locate a church or civic group to organize volunteers to spend extra time with the people at this home. You may even be able to organize an outing if you can get the permission of the facility. Try to find an ally among the case managers or staff. If you can find someone with some authority that also would like to increase the opportunities for community involvement, you will probably make some progress.
Although you have good intentions, also keep in mind that you do not have access to medical/psychiatric records. Many patients in nursing homes may have significant cognitive deficits that are not evident to a lay person. Seizures, high risk for stroke, or other health complications may require intensive observation and low stress levels. Some patients may have periods where they are alert and aware, but may also have episodes of confusion or delirium. Some may even be prone to aggressive or violent outbursts if frustrated, frightened, or overwhelmed. Remember that nursing homes are very controlled environments with regular routines. Pat has seen patients that look "OK" in nursing homes, but were completely unable to function outside of a very controlled environment. Without access to medical records, it's impossible to know the medical or psychiatric issues involved.
Nursing homes are usually overseen by state agencies and/or accredited by outside agencies. You might want to research your nursing home's affiliation. If you believe that patients' rights are being violated, you could contact one of these agencies and make a formal complaint.
DEAR PAT: My mother had a seizure, and was found to have a large mass last month. An MRI was not helpful because the swelling was so great, they cannot see what is inside. She doesn't have insurance, so she was sent home from the hospital and ordered another MRI three weeks later. The swelling had remained the same, but with a new pocket in a new location. She has an appointment to see a neurosurgeon next month. No angiogram was done, and besides the MRIs she has not seen a doctor since being released from the hospital. Worse, her doctor does not return our calls when we have concerns. I am concerned that she is not getting proper care because of her lack of insurance. She was in a car accident in October, and it is possible that this is a related injury from that incident. What will happen to my mom if this swelling continues to increase? Are there other diagnostic tests to see what it could be? I am afraid for her, and I don't think this case is being treated with the appropriate urgency. Am I overreacting, or is this normal for brain injuries?
PAT'S RESPONSE: The person with the most information about your mother is her doctor. Pat certainly can't comment on the specifics of your case. If your mother has a "mass" (often a tumor or growth), a few weeks may not make much difference to her physical health. In fact, sometimes "growths" are evaluated over a period of months to see if they are growing or not. Also, if it is a growth, it is unlikely to be associated with her accident. My advice is to wait and see what the neurosurgeon says. Carefully monitor your mother, and if you see any further seizures or witness changes in her behavior (such as disorientation or confusion), take her to the Emergency Room.
As for returning your phone calls, doctors should always communicate with patients and family members. However, remember that medical information is confidential and is not to be released to anyone but the patient. Some doctors follow this more strictly than others, and laws may vary from state-to-state. However, if the doctor is not returning calls or providing adequate explanation of your mother's condition to her - then change doctors. It is essential that patients feel comfortable with their physicians and physicians have a clear responsibility to keep patients fully informed of their medical condition.
Posted on Tue, April 26, 2011
by Meridian Tech Group, Inc