I received a brain injury in 1972; I need to know if there is a new rehabilitative treatment to try now in 1997.
There have been major medical advances in the area of traumatic brain injury treatment and rehabilitation in the last 10 - 15 years (not to mention major advances in fashion since 1972). If you are interested in current rehabilitation trends, peruse the literature (i.e., medical journals) at your nearest medical or university library. This Internet site, as well as others, contains a good list of references to start with. For treatment options, you may want to consult your state Brain Injury Association for information on programs specializing in brain injury. The national Brain Injury Association in Washington, D.C. can refer you 202-296-6443 to your state affiliate. And if you're one of those misguided individuals who is swept up in the 70's "retro" thing, stop it.
I am wondering if some of the problems I have (due to a traumatic brain injury) will ever disappear. What are the chances of improvement over time? For example, I have heard of patients regaining speech a year or two after an injury. Is there a "typical" course of recovery for people with traumatic brain injuries?
There is no typical course of recovery from traumatic brain injury since TBI affects each person in a unique way. After all, we start out as individuals, and even after the injury, we still are individuals. In general, a person achieves the most dramatic recovery during the first year after the brain injury. Intensive rehabilitation services can greatly enhance one's improvement. However, improvement can continue to occur over the next several years. The physical healing of brain tissue eventually will taper off, but the door remains wide open for personal growth. The key is for the individual with brain injury to STRIVE for continuous improvement. Participation in appropriate therapeutic activities and embracing a healthy, active lifestyle are good for your brain, body, and soul. So, see good therapists, participate in a dance class, take a course in Chinese cooking, and meditate, instead of, say, munching Cheeto's in front of "McHale's Navy."
My friend was caught in the cross-fire of a gun battle between gangs here in L.A. just 2 months ago. A stray bullet passed all the way through his brain and lodged in his skull. The bullet was removed and after a couple of weeks he was moved to a rehabilitation center. He has made a miraculous recovery, but now that he's back home he's not getting the valuable therapy he needs to continue making good progress. He doesn't need my help for motivation and enthusiasm, but I would like to help him with practical therapy to get the left side of his body functional again. He is exhibiting improvement already, so I think it's just a matter of time and appropriate therapy for him to regain function. He cannot afford professional help - any advice?
A periodic consultation with a professional, such as a physical therapist, might be a good idea. . A physical therapist willing to come to your friend's home would be best. Check with rehabilitation clinics versus major hospitals for therapists that do some private work. You could attend the consultation with your friend and his family and learn some techniques to help him at home. The therapist could be hired to come once a week, once every two weeks, or even once a month to assess your friend and give you guidance on helping him with exercises. Of course regular, frequent physical therapy that tapers off as the person makes progress is best; however, you can be creative and at least get some guidance from a professional who can help you keep your friend active. Some help is better than none, in Pat's opinion. Also, think of ways to help your friend fund more therapy. He should apply to social services for help, at least. Maybe you and his other friends could get together and hold a small fund-raiser. If nothing else, your being there and helping him use his body and mind (instead of lying on the couch all day) will be extremely beneficial.
My brother sustained a right frontal lobe injury about ten years ago and has cognitive difficulties which my family and I do not fully understand. He cannot find certain objects, such as clothing and cookware, when he needs them unless they are in his immediate visual field. He needs quite a bit of assistance. How can we get him the help he needs to perform day-to-day functions? Could Occupational Therapy help, and if so, is it provided by the Department of Vocational Rehabilitation?
You are on the right track in considering Occupational Therapy, which focuses on helping people perform activities of daily living, such as self-care. In addition, you may wish to consider referring your brother to a neuropsychologist for evaluation and treatment recommendations. Neuropsychologists specialize in addressing how a brain injury affects/impairs behavior. The neuropsychologist, working with the Occupational Therapist and possibly others, can help your brother and your family understand the problems and formulate potential solutions. If your brother has not been in a formal brain injury rehabilitation program, consider this option -- it is the best way for your brother to receive comprehensive services. The state Department of Vocational Rehabilitation can help by paying for services, like those mentioned, IF they are necessary to help the person become employable. Basically any person who has a disability and the potential to work can receive services from the Department. Fees are based on individual income. Definitely contact your state Department of Vocational Rehabilitation to find out about eligibility and available services.
Hi! About two years ago I fell and hit my head and was found unconscious. 6 CT scans later and no one can find any "damage," yet I still have intermittent memory loss and now symptoms of stroke. What should I do? I can't afford to keep having CT scans.
CT scans are good at showing many types of physical damage to the brain. However, they aren’t perfect and there can be damage that the CT scan doesn’t pick up. I would suggest that you consider a neuropsychological assessment. This evaluation won’t tell you what your brain looks like. Instead, you will be given a number of tasks related to attention, memory, auditory and visual processing and visual-motor skills to assess how your brain is working. In many cases, it may be helpful to also have a follow-up evaluation in about 6 months to determine if things are getting better or worse or staying the same.
I had a truck accident 7/30/98 and I sustained a serious closed head injury among many other injuries. All of the doctors I’ve been seeing are thoroughly impressed with the recovery that I have made, but now that I’ve been out of therapy since January, the neuropsychologist recommended that I go back into therapy just when my life started to regain some normality. I am 29 and had spent the last 9-10 months recovering with my parents. Now, my mother doesn’t want to let me out of her sight. I can understand her concern, but I’m tired of my whole life being about the accident. I’ve recently gotten engaged and I want to put my time into my relationship. I don’t have a problem going back into therapy, but I want to be able to do it here, with him, instead of living with my parents again. I’ve lived on my own since I was 17 and managed very well. What should I do?
Pat can’t figure out from your question why your neuropsychologist has suggested you go back into therapy, or what kind of therapy is being suggested. It sounds like you’re getting a lot of advice. Remember that these are choices about your life and you get to make them. Brain injury or not, you’re an adult and you’re entitled to make choices about your own life. Consider what the neuropsychologist suggests. Be sure you understand what his or her concerns are and why therapy is being recommended. Sometimes people try to get their "old life" back too soon. Maybe that’s the concern. However, discuss this with your fiancée, family, friends and other people you trust. You can always try therapy for a while and change your mind if things are going well. Or if you and your loved ones think you are doing well now, you could try life without therapy and try it later if you need help. It’s really up to you.
As for your mother, this is not at all uncommon. Your mother is likely very concerned that you can’t handle things or will get hurt again. She may be afraid that you’re trying to do too much, too fast. Maybe she’s concerned your fiancée doesn’t understand everything about your injury. She could be right. Talk with your mother, fiancée and others about those concerns. Find out if the medical professionals that work with you share her concerns. Then make an informed decision. Remember that it’s your life. As an adult, it perfectly appropriate for you to start your own household and, at some point, your mother is going to need to let you and your fiancée live your own lives and make your own decisions – whether you’ve had a brain injury or not.
My brother Rusty was in a bad accident on December 6, 1998. He is 30 years old and has severe brain damage. He was in a hospital for two months and is now in a nursing home where they basically keep him alive but don’t give him enough therapy to ever be able to walk again. They help him get out of bed but don’t work with him enough to be able to get back the way he was. He needs therapy, not just someone throwing him a chair and then walking away. He is not able to talk yet but he can read and remember things. Is there any way I can help him start to talk again? It seems he wants to talk and I find he tries to make sounds but takes him along time. It seems to be taking my brother forever to get better. The doctors have given us no real hope. They say he has microscopic damage in many areas and I’ve read enough to know that this is hard to detect. Can you help me?
One of the things family members want the most is for their loved one to be back "they way they were." I would love to tell you that with enough therapy, love, and prayer that is what will happen. Unfortunately, total recovery rarely happens after a serious brain injury. Persons with brain injury followed for 10, 15 or more years often continue to report problems associated with their brain injury. Many are unable to return to work. The other thing to keep in mind is that the fastest recovery takes place in the first 6 months. Further recovery often occurs, but it can be a slower process. Recovery occurs at its own pace. It is important to view recovery on a day-to-day basis rather than to compare things to way they were before the injury. Goals should be set based on your brother’s current status. I’ll bet that if you look at where he was back in December, you can see some progress from where he was. Some families like to videotape things so they can look back two or three months to see if progress has been made. Many families are amazed at how much progress they didn’t see – because they kept thinking back to "the way the person was" instead of appreciating how far the person had come already.
The best thing you can do for your brother is to continue to spend time with him, talk with him, and encourage him. Even though he may have trouble talking, it sounds like he can hear you and I’ll bet he appreciates the time you spend with him. Talk with the hospital staff to see what you can do to help. If your brother can communicate through gestures or writing, use those and don’t get frustrated by his not talking. It sounds like the doctors are saying that your brother had a very serious injury = a kind that often occurs when the brain is jostled around during a motor vehicle accident. (Try shaking an egg really hard and then cracking it. The yolk and whites are all mixed up. It’s a similar thing when the human brain gets shaken really hard during a car accident). Given the injury you describe, the length of time since the injury, and the symptoms you describe, I expect the doctors are correct in saying that he won’t ever get back to the "way he was." But that doesn’t mean he won’t improve. It doesn’t mean his life doesn’t have meaning or value. It certainly doesn’t mean you should give up hope. Just be realistic about what you hope for.
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.
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.
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 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.
My Son fell 35 feet in May and woke up in September. He is progressing every day. He wants to go home but he is in a subacute hospital. He will be there until March or April of Next year. He is mildly agitated. They say he will get more agitated, but I don't think he will get that bad. I see him everyday and he seems to understand he has to work to get better. He wants to go home and that is his main word. The caseworker at the hospital tells me it will be impossible to have him home. The way he made it sound it was a death sentence. My son really wants to go home and I feel that home visits will help him a lot. I want him to come home in March-April. He has a severe head injury, but he is currently at the ranchos of 5 working toward 6. Is it always the case that he will get more agitated or could he get a little worse and now go past that? Please help!
You may be put in the unfortunate position of making a very difficult decision. Most people want to return home immediately after a brain injury. However, agitation, mental confusion, aggression, and diminished impulse and emotional control are frequent consequences of brain injury. These behaviors are not easy for family members to deal with. Unfortunately, survivors often cannot control their behaviors. Also, remember that inpatient rehabilitation units provide intensive services that are often not available in the home (such as physical, speech, occupational, or psychological therapies). In the long run, it may be better to wait until your son is in better control of his behavior and you have a better sense of his long-term needs. If you do decide to take him home, please be sure to educate yourself as fully as possible about what to expect. Arrange for home health care if needed. If agitation is a problem, he will probably need someone monitoring him at all times. No matter how much your son wants to come home, it’s important that you realistically understand everything that will entail.
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.
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.
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.
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.
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?
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
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!
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.