General Resources
DEAR PAT:
I am searching for resources for people with brain injury who live in Canada. Any ideas?
Pat recommends you contact the Ontario Brain Injury Association by telephone 905-641-8877 or e-mail (obia@spartan.ac.brochu.ca). They have a lot to offer!
DEAR PAT:
I am the wife of a TBI survivor. We have reached a point in our lives where the resources are gone. My husband has had rehab, counseling, therapists for cognitive functioning, etc. We are currently seeing a marriage counselor through my husband’s vocational rehabilitation case manager who is pulling services since my husband will not be employed in the near future. What resources do he have after everything else has been used? He has been seeing a psychiatrist, but they haven’t found a medication combination that works. He suffers from mood swings, cannot hold down a job, and does nothing but sit all day and play on the computer. He has suicidal tendencies and gets angry easily. Please tell me where I can find more resources.
Spouses of brain injury survivors with emotional control problems really understand the meaning of "for better or for worse." One of the hardest things to do is to adjust a marriage to life after brain injury. It is even harder than adjusting to life after other kinds of serious illness or injury because behavior changes often make it seem as if the TBI survivor just "isn’t the same person."
Your question is a good one. Unfortunately, there is no easy answer. There are a number of websites that are devoted to TBI and there may be a Brain Injury Association in your area that can help. Some websites are available through the "links" page on this site. Find out if there is a brain injury support group in your areas or in an area nearby. Other TBI survivors and family members of TBI survivors can often given helpful guidance since they are likely to have encountered similar problems. If you belong to a religious community, ask for help. Many religious groups and organizations may be able to assist with providing social support, respite, or spiritual counseling. Couples therapy is a good idea, especially if the counselor is educated about the effects of TBI. If you can, locate a psychologist or counselor in the area with experience helping families with brain injury. Consider consulting them on an individual basis. Family members caring for TBI survivors experience high rates of depression. You need to take care of yourself as well as your spouse.
DEAR PAT:
I am a long-term care Administrator. Our facility is attempting to deal with a 74-year-old woman with a brain tumor, which is growing and causing aggressive behavior towards other residents. I am unable to find a facility in our area of Southern Wisconsin that would be appropriate for discharge. Where can I access a list of such facilities?
It is often very difficult to find placement for violent or aggressive patients. Such patients require extra resources, are stressful for staff, and can create dangers for both staff and other patients. Other facilities that do accept aggressive patients may limit the number they accept due to staffing and other concerns. In your case, it sounds like your facility is in a difficult predicament with this woman. I would make a couple of suggestions in the short-term. First, work closely with her family and physicians (consider a psychiatric consult) to identify medications that may help to decrease aggressive behavior and to make this woman comfortable. Second, be sure your staff is trained in the proper way to restrain aggressive elderly patients. Consider consulting a psychologist to develop a behavior modification plan. Even with cognitive impairments, many people are still responsive to behavior modification techniques. Finally, try to identify when this woman is becoming agitated and develop a plan for dealing with her aggressive behavior that protects her, your other patients, and your staff. It sounds like a tall order – and it is. (Probably why you’re having such a hard time finding an alternative placement). For your facility, it sounds like it’s only a short-term solution until you can find a more appropriate placement.
I don’t know if I can be of much help to you in Wisconsin. About all I can suggest is that if you haven’t already done so, you might want to contact the Wisconsin Department of Health and Family Services. On their website, they provide contact information for people who should be able to help you identify good nursing home or mental health facilities for this woman. You may also want to look into facilities specializing in Alzheimer’s, as they often have to deal with unusual behaviors.
Many rehabilitation professionals have been concerned for years about a lack of resources of aggressive patients – and too many end up in inappropriate placements. Unfortunately, the problems of placing neurologically impaired, aggressive, elderly patients are only likely to increase as the population ages.
DEAR PAT:
I stumbled across this site while doing research for a course I am taking towards a certification in Business Education and a certificate in Instructional Technology(Technology for Special and at Risk Populations) I am a 35 year old female who suffered a mild-moderate Traumatic Brain Injury from a very serious car accident. I spent close to 2 years feeling like I was walking in a dream, forgetting whole conversations, involuntarily dropping things, fighting the world etc. I guess you can get the picture. This happened in Fall 1995. I worked full time in computer and technical sales at the time. I was trying to do my job after the accident and realized I was just not the same. After extensive Neuropsychological testing, I knew I was brain injured. The recovery has been an adventure filled with all kinds of psychological, visual, occupational, and physical rehabilitation as well as surgery. In 1997 I attended a Business Skills program to determine what I was capable of and to possibly secure supported employment. I thank all who were there to help and support me each and every day as I struggled to find the right mix of compensatory strategy and acceptance of my disabilities (physical and sensory). In 1998 I went back to school with great anxiety to prove to myself and to everyone else that this thing was not going to lick me. What I have found out is that the type of injury I have basically slows me down but it doesn't hold me back. I must take frequent breaks while doing work and I use adaptive technology (keyboard and word-processing software). I use imagery and relaxation techniques to cope. I lead a full but different life now and in February I will be student teaching on the secondary level. My intention is to work in Special Education. I probably will never work full-time again. Ironically I am working on an Executive Summary on TBI. My questions are: Do you know of specific site with criteria for identification on TBI? Do you know where I can find information on educational interventions being used? (Obviously I can draw on what I know personally) However, I do need a reference page etc. P.S. What you are doing is great.
Wow! Sounds like you have worked hard at recovery, and I’m sure you serve as inspiration for people who know what you’ve been through! As for educational information, please see the two references on Pat column #16 (Just click on the "Archives" button at the end of this page).
The homepage for the Brain Injury Model Systems is TBI Model System. This should provide you with some good information about brain injury. However, there is no substitute for going to the literature in the peer-reviewed journals in your college or university library. There are several devoted to current research on brain injury and rehabilitation – Examples include Brain Injury, the Journal of Head Trauma Rehabilitation, and the Archives of Physical Medicine and Rehabilitation. Learning to use Medline or PsycInfo will be invaluable to you if you are interested in keeping up with research in the area of brain injury or rehabilitation.
DEAR PAT:
I had encephalitis is May 1997, and was kicked out of my home, and forced to pay child support. Now I can't work anymore, and my wife is trying to have me put in jail for non-payment. My trial is Dec 6, with a hearing Nov 23, is there any resource I can turn to for help besides legal aid as they refused to help me in August. I am also looking for a new neuropsychiatrist in the Richmond -Charlottesville area. I take 40 mg, of Ritalin per day, and my current doctor is in Winston-Salem. Hoping for answers. Thanks.
First, I should tell you that there are two excellent medical centers nearby. In Charlottesville, the University of Virginia Hospitals, and in Richmond, the Medical College of Virginia. In addition, you will find other professionals in hospitals or private practice in both cities (you can locate some experts by using the "Find the experts" section of this website).
Finding a new neuropsychiatrist sounds like the least of your problems. I f you are disabled due to your illness and cannot work, you should apply for Social Security Disability. Some of this income can go toward child support payments if you are qualified. Remember, that financially supporting your children is your responsibility whether you are married or not. (It should be something you want to do as a father, not something you feel "forced" to do). If you haven’t already, you might consider a neuropsychological evaluation to examine your strengths and weakness. If you are disabled, this type of report can help substantiate your claim. You may need an attorney to help guide you through this process.
If you believe you might be able to work (but maybe not at whatever you did before) - there are supported employment services to help people with disabilities find viable jobs. In some cases, it may mean a new career, developing compensatory strategies on the job, or simply finding an employer willing to be supportive and provide accommodations.
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.
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 York. It contains a locator for long-term care sites in the state.
http://www.nyshfa.org
This is the website for a national organization of long-term health care facilities.
http://www.ahca.org
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.
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!
Pat's Comments:
For those of you seeking information on brain injury and the resources in your state, contact your state Brain Injury Association. If you cannot find it in the telephone book, contact the national Brain Injury Association, Inc., 105 North Alfred Street, Alexandria, Virginia 22314. Telephone: (703) 236-6000. Internet: http://www.biausa.org
To the Parent looking for TBI professionals in Nebraska. Pat doesn’t have anyone specific in mind. You might try contacting the Psychology Department at the University of Nebraska-Lincoln for names of therapists or neuropsychologists. Locating a hospital that treats brain injury could help you locate a neurologist or physiatrist. Also, following is information for the Brain Injury Association of Nebraska. They probably have a list of resources in your state.
Brain Injury Association of NEBRASKA
President: Kathy Feldman
Co-Executive Directors: Jan Kauffman & Sharon Auld
PO Box 124
Gothenburg, NE 69138
UPS PACKAGES: 1108 Avenue H, Gothenburg, NE 69138
Phone: (308) 537-7875 or (308)-537-7663
In State: 1-888-642-4137
Fax: (308)-537-7663 >> Please Call First!
Pat thought the readers might enjoy this letter from a TBI Survivor and an "Ask Pat" fan!
(P.S. Pat just loves fan mail!)
DEAR PAT:
I understand that you know everything I need to know and what you don't know isn't worth knowing! My compliments to you for good advice couched in delightful banter. I am a survivor of a very severe TBI who has been blessed with considerable recovery. Persistence and integrity coupled with education and a sense of humor get me through. I also owe a tremendous debt to family, friends, and mentors (it took a while to find the right ones). Be an educated consumer; there are good doctors and there are not so good doctors, shop around for a genuine one - credentials are important, but not a substitute for compassion. Support groups can be an immense source of information and help; be sure it is well facilitated, focused, and viable. The BIA (Pat’s note: BIA = Brain Injury Association) is great! You/I/we are different, just like everybody else - TBI sequelae make you more unique, not diminished. In many cases, TBI doesn't affect IQ to the same degree as it does EQ (emotional intelligence); find alternative ways/coping skills to make up the difference (I'm still working hard on that one 35 years later). Be a skeptical optimist in exploring new information, therapies, and rehabilitation techniques - 1,000 years ago, everyone KNEW the earth was the center of the universe; 500 years ago, everyone KNEW the earth was flat; 100 years ago, the medical profession KNEW malaria was caused by vapors; imagine what they'll know tomorrow.
Here's another email from one of Pat's fans!
DEAR PAT:
Pat, I suffered a closed head injury five years ago. I am now studying speech pathology and plan to work with TBI victims. Although I do not have a question, I do want to say that you are right on the money on so much of your advice. I think it's great that you take the time to help people find an answer to so many questions. Because of people like you I beat the odds and have even been accepted to grad school five years after being told I would not return to college. Thanks for believing in us and taking the time to show the way. R.C.M
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.
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