Living with Traumatic Brain Injury




Living with a Brain Disorder CategoryA lady (let’s call her Carla) is driving down a street — it’s 10:00 pm on a Friday night. She thinks about her kids in bed, makes a mental note to check in on them before she goes to bed. She wonders what her boss has in store for her at the 8:00 a.m. meeting that was scheduled a week ago. Suddenly there is a blinding flash of light; a deafening crash, and her world goes black. Sound like a scene from a movie? I wish it were. According to the CDC, 1.4 million people in the USA sustain a traumatic brain injury (TBI) annually; 20% of these are caused by motor vehicle accidents (MVA). Fifty thousand of these traumatic brain injuries result in death each year. Carla might never be able to communicate with her children meaningfully. She certainly will not be able to get back to her work any time soon (if ever). Her social network will be disrupted; her schedule will be a series of medical appointments and consultations.

Brain MRIUnlike a fracture or an elective surgery, the ordeal does not end after the medical procedures are through. When a person sustains a TBI — in most cases families face some of their toughest challenges after the immediate palliative procedures are complete. The patient goes through acute care, an inpatient rehabilitation program, and then may be discharged to their home. In some cases, if they are medically unstable they are required to stay at post-acute settings and also receive outpatient rehabilitation. Some states in the USA also offer long-term care centers for those patients who might never be able to function safely and independently in their homes. These centers usually become permanent “homes” for these patients. Caregivers are often torn between running their homes and visiting their loved one; living their own life and accompanying their loved one to various medical appointments.

The residual physical impairments are only one aspect of the injury. Patients with TBI are prone to emotional disturbances, outbursts and attacks of a myriad of emotions ranging from depression to frustration to extreme rage. Anson and Ponsford studied 33 individuals with brain injury, and found that 51% of them had clinical levels of depression and anxiety (based on their scores on various scales that were administered. They also elaborated upon two styles of coping — non-productive coping (avoidance, self-blame, resorting to drug and alcohol use, etc) and adaptive coping (accepting the problem, and taking proactive steps, incorporating humor and enjoyable activities, etc). The results of their research study suggested that there was a statistically significant correlation between the type of coping mechanism used and ability to overcome the emotional problems.

As a physical therapist, I have spent more than 10 hours a week with one patient and their families. This intense, one-on-one time gave me a glimpse into their current lives and a hint of how things were before this terrible episode dictated every aspect of their lives. I worked with moms who did not recognize their children, with professors who had completely lost the function of speech and teenage boys who would spend all of their adult lives confined to a wheelchair. I saw families attend session after session, hoping to find a fragment of the person they once knew and loved.

For families, living with someone they don’t recognize any more, being pushed suddenly into the role of a caregiver, and dealing with all the emotional ups and downs of the patient takes a physical and emotional toll. A recent literature review study that was published in the Journal of Clinical Nursing indicated that a family member’s cognitive, behavioral and psychological impairments of are greater stressors to the family than their physical disabilities after a TBI. The same study also suggested that partners of people with a TBI scored higher on stress indicator scales than parents; for the most part, women appeared to be more stressed than men.

For most people who have not been through these experiences, this information may be unfamiliar, and difficult to relate to. But the only way that people with TBI may be reintegrated into the community is increasing awareness about this complex disease. Understanding the intricate complexities in the lives of people living with brain injury will hopefully will make us more accepting of people. We can then do our part to assist patients reintegrate smoothly into the community. TBI is a disease that can be prevented by increasing awareness in the community and education with safety tips. The National Institute of Health and the Brain Injury Association are excellent resources for the entire spectrum of Brain Injury.

References

Verhaeghe, S., Defloor, T., Grypdonck, M. (2005). Stress and coping among families of patients with traumatic brain injury: a review of the literature. Journal of Clinical Nursing, 14(8), 1004-1012. DOI: 10.1111/j.1365-2702.2005.01126.x

Godfrey, H.P., Knight, R.G., Partridge, F.M. (1996). Emotional Adjustment Following Traumatic Brain Injury: A Stress- Appraisal-Coping Formulation. Journal of Head Trauma Rehabilitation, 11(6), 29-40. DOI: 10.1097/00001199-199612000-00006

  • Great article. Comprehensive. Resourceful. Thank you for making the information available to the online community.

    Have a simply amazing rest of your day and God bless you!

    Craig

    • Kevan Henson

      I have lived with a T.B.I.for the past 42 years, In April of next year it will be 43 years since I fell while mountain climbing in Colorado. This is an excellant description of the physical mountains that have to be climed; but I will tell you about the emotional mountains that have to be climed as well.

      I have been diagnosed with multiple personality disorder and apost-traumatic-stress-disorder. These limit my social life,the jobs that I am limited to, and my personal life as well. I used to go through therapista like a 12 year old boy go through G.I.Joes.I suffer from depression,frustration,anxiety,and anger on a mega scale. the only reason I haven’t blown my brains out is because I have let Jesus Christ into my life.He made a promise to me that he would return and rescue me from my disabilities. He is the good shepard.When he calls I will follow him into the land that is free of sin. Heaven and earth are going to be one again.God will set up his kingdom in Juruselem and I will be there to watch it all happen.

      With this knowledge behind me,I just do what I can do and I let Jesus Christ handle what I can’t handle. every day I ask Him for the forgiveness of my sins and he in his infinate mercy will forgive me-Amen!

  • Amy

    As someone I know put it: it’s like the statue of the person is there, but the character has changed. This can be so hard to adjust to, which is why skilled professionals are so priceless. Here’s an article on coping with TBI that might help.

    • Kevan Henson

      One of the things I have had to learn is how to get to know and like myself again.With the post-traumatic-stress-syndrome that I have been diagnosed with,it took me several years to get to know myself,and to like myself again.I have finally found a gifted therapist who has given me the ability to finally accept and like myself again.

      If anyone else out there is going through the same problem-please write-Kevan

      • Rose-Marie

        Liking the new you has been quite difficult for me as I don’t really remember the old me and just live my life one day at a time and finally after about 15 years since my injury regard each day as new live it because tomorrow none of us know about. Now is what really counts because in a matter of minutes everything can change.

  • Lars O’Reilly

    This is a good article. I was invited to comment on it by Kelly. I’m from Ireland, living in the south of the country in a town called Wexford. I had a stroke at the age of 35 for no aparent reason. At least none that doctors could find. It’s just pure rotten luck.

    While a stroke may not be considered a TBI by some (it’s called an Aquired Brain Injury or ABI) believe me when I say that for all that, it’s traumatic none the less. The disruption is real, the disabities are real, the guilt and loss are real.

    Keep putting the message out there as I will. Eventually someone will take notice of the fact that this is a very very virulent and frequent disease.

    Lars.

    • Kevan Henson

      I fell while mountain climbing in Colorado when I was 17 years old leaving me with a severe tbi.I have had to live over 41 years with the effects of it.Please write to me and and togeather,with Christs help,we can help each other through this ungodly mess.My E-mail address is meowglick1@msn.com.Please write.

  • Lalitha Shankar

    That was a wonderful article ,Its an eye opener for those of us who think think we are going throgh hell,nurturing just a ‘flu

  • Very good article. I’m 7+ years into it with my wife. I just began my 1st blog ever. Feel free to check it out. There’s so much we’ve been through and as blessed as I am to still have her with me…that “statue without the character” remark is like, ‘wow.’ My wife is still very much here, but had it not been for some miracle medication, those wild mood swings you discussed, were truly taking their toll on me and our youngest son. I’m bookmarking your page and will be checking out other articles from you. Thanks.

  • My mum has dementia, and although unlike TBI it came on over a prolonged period, the effect is still the same. The person you knew, who loved and raised you, doesn’t even know who you are. The other day she accused my sister of chatting up my dad and trying to steal him from her.
    It’s actually my dad who I feel most sorry for. He has lost his wife, his soul mate. It breaks his heart to see her like this. They will have been married for 67 years at the end of this month. Life can be very cruel.

  • It’s incredible the toll that traumatic brain injury has on peoples lives. Not only the person who actually sustained the TBI but the family member who ends up being the caregiver. Thanks for sharing this personal story, it’s through these stories that it helps others understand a little bit better what life is like living with a traumatic brain injury.

  • Anonymous

    It’s been almost 25 years since my son suffered a TBI in an accident. He was only 7 at the time and because of his age recovered more than an older person would have. Yet… the boy that finally, slowly emerged over six months from that coma was certainly not the one I knew before.

    He and I both know that he owes his life to the lucky circumstance that someone who knew CPR was on the scene immediately. He was not breathing and an unknown portion of his deficits now are due to lack of oxygen as well as the twisting injury to his brain stem and other contrecoup injuries.

    What has been the most frustrating for him is the lack of brain injury specific treatments. He got the best treatment available at the time and in so many ways it was miraculous. Yet, as an adult now, he is not treated as a TBI patient, but as a psychiatric patient. And far to many psychiatric treatments are too closely tied with drug abuse.

    His physical problems such as painful spasms are essentially ignored. A few doctors recognize that constant physical pain is a problem, but because his injuries mimic certain psychiatric diagnoses, they also refuse simple pain treatment… for fear of drug abuse.

    Though so many suffer TBI, there is not (that I can see) a medical ideology to deal with these injuries outside of psychiatric treatment. Psychotropic drugs are powerful and they can induce mania… and the mania they induce triggers a diagnosis of bipolar… which involves — for the TBI patient — an artificial diagnosis of the self-fulfilling type.

    Over the years, my son has been diagnosed with so many different things. A few doctors were honest enough to tell us that their diagnosis depended on whether insurance would pay for treatment or not. Others honestly thought he was suffering from one DSM problem or another.

    The one thing that confuses me is that though the very first CT scan my son had showed that his substantia nigra — an important part of the brain in producing dopamine — was destroyed, that no one, even those we’ve begged to look at that, have taken us seriously that a dopamine deficiency is a huge part of his problem.

    Anyway… I keep reading and I keep suggesting and hoping that researchers will eventually look at injuries separately from “inborn” problems. I’ve no doubt they are related and I’ve also no doubt that taking a look from a different perspective will help those suffering from either or both.

  • denise

    My husband is @ the 3 1/2 year mark of tbi. Its a rough journey.
    If anyone would like to discuss tbi, recovery, etc, please email
    me denisebryant40@yahoo.com.

  • Kevan

    The one thing that families must understand is that it will take an individual who has suffered a tbi a certain amount of time to get to know and like themselves again.When they start to critizise them for everything that they do,it is going to take them longer to make this transition.Families must be very passive in their conversations with them.They must do everything in their power to make the individual as comfortable with themselves as they possibly can.

    Kevan

  • sean

    hi
    i am 41 now but had a mva at 34,doctors tell me i will never be the same(i have found this to be true)
    i battle around crowds and cant do any work as i get a feeling in my head i cant explain-its like a cloud covers everything and i get mad and want to smash things and more.
    is there anyone else out there with these problems and more.
    please come back to me
    regards
    sean – south africa

Nirupama Shankar, PT, MHS

Nirupama Shankar, PT, MHS, is a physical therapist by profession, and has over 7 years of clinical experience in the field of neurological rehabilitation. She has treated individuals with stroke, traumatic brain injury, spinal cord injury, Parkinson's disease, multiple sclerosis, and amputations. She has also completed training modules and community education projects in Michigan and North Carolina.
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