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Living with a Traumatic Brain Injury Living with a Traumatic Brain Injury

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[♪mellow music♪] [Living with a Traumatic Brain Injury] Having a head injury ended my life, the way it was before. There were times when I thought it was just so absurd, so unfair, that I had some real moments of despair. The thing that I miss the most is having the capabilities and ability that I used to have. I was just in shock. Why am I here? Why am I speaking funny? Where am I? [female narrator] Anita, Zsche, Allen and Brian have had traumatic brain injuries or TBI. Almost a quarter of a million Americans are hospitalized every year with brain injuries. TBI can alter an individual's physical abilities. Even more devastating are the potential personality changes and loss of cognitive skills. People may have paralysis, they may have problems with speaking or understanding language, they may have problems with double vision, they may have difficulty with moving about. The most common problems that people have, and this stretches across mild to more severe brain injuries, are problems with thinking and problems with managing behavior or emotions. Even for people who have relatively mild brain injuries, they often have a more difficult time with thinking. They may think slower. It takes them longer to process information. They may have problems with their memory. Since I had a head injury, it doesn't take very much pressure to make my mind go blank. It just sort of shorts out and you can't think. And so I have to do a lot of things to sort of organize the way information comes in and control how much comes in so I don't get overwhelmed by too much at once. If I'm able to do that, then gradually I've been able to return to the kind of work I used to do, which is really important to me. [♪♪] You know all the people who are running the park? >>Yeah. [all laugh] [narrator] Four years ago, a car accident left Anita Kay with broken bones in her pelvis and lower back. [Anita] Being physically strong and athletic was part of my identity. The day before the accident, I ran around Discovery Park, for example. So it was hard to go in one day from someone who does that to someone who can't even stand up. [narrator] Anita regained much of her physical abilities through rehabilitation therapy and a lot of determined work. But she had a brain injury as well, and that has been the longest part of Anita's recovery. [Anita] I had no idea going in how long it would take, and I think it's really important for people to be realistic or to know they're in for a long haul. About nine months after my wreck, I had a neuropsych evaluation. The neuropsychologist said that with the kind of head injury I had, it could take four and a half years for it to be better. And I got very angry when I heard that. I thought he was a quack. I thought he didn't know what he was talking about. I was in complete denial, and I completely pushed that information away. [narrator] Anita was a health policy system analyst who worked with a lot of data. Immediately after the accident, she couldn't read and she couldn't do math. [male speaker] In traumatic brain injury, oftentimes there is damage to the neurons. And those neurons carry out our vital functions of thinking, of emotions and all of our physical behaviors. When there is damage to certain of our neurons, there's inefficiency in how the brain processes information. When I'm working on a problem in data analysis, in the past I could track mentally the steps in the process. Now it's difficult for me to do that, so I've had to change the ways I do my work. On a computer I open up a separate window and I write notes about each step that I go through even for sort of relatively simple processes because I can't trust myself to get a line of thought going again and hold it after I've been interrupted or follow it all the way through if it's really complex. [narrator] Learning to make adjustments and preparing to go back to work are part of rehabilitation. [Bell] There are people called vocational rehabilitation counselors who can help sit people down and work out what are they good at, what kind of work or productive activity is out there that they might be able to take their old skills and learn some new things and apply them to a new kind of work or a new kind of volunteer activity so that they can have productivity in their life and feel accomplished. [narrator] Answering those questions is the first step. Next is fitting an individual's new abilities into the workplace. [male speaker] Sometimes they're very, very marketable. And then also some things have to be worked around or in certain cases we're going to have to get resources and assistive technology and other kinds of things to help you work around your barriers. The job is going to have to be done differently procedurally, or we may have to modify the work station, or we may have to use a certain type of computer program to help you do the work better. They helped me work toward those goals, and they would adjust the therapies that would help me to develop abilities that would get me back to what I want. And those things for me again were to be able to go back to work, doing something like my former work, to be able to go back outside and enjoy athletics again. And so that helped a lot. I think support groups are helpful also. Hopefully it's a support group that really has a focus about optimizing community adaptation. But feedback from your peers, sometimes that's easier to accept from another person with a brain injury than even loved ones. [narrator] Anita continues to recover, continues to define the way she lives now. Recently after all the weather with all the big wind storms, I've been watching an osprey nest. There's a tall pole along Marine Drive. There's an osprey nest up there. So I've been watching a situation where roofs have blown off, trees have fallen over, all of this destruction, but that nest is still up there. And that's what I do now. It's like I want to look around me every day and find things that are an inspiration to keep going. [all laugh] [♪♪] [narrator] Traumatic brain injury happens when force is applied to the skull. What happens is that the force is transmitted through the skull, and the brain, which is a very soft material, kind of on the order of cottage cheese, gets this force applied to it and, not surprisingly, deforms, has bleeding, has swelling, and that ends up either destroying or at least partially damaging the neurons that make up the brain. It's ironic it's a fragile item. It's this three-pound substance with a nice tough skin-like covering. I love the Latin term for that. As someone with a tough Italian mother, I like the notion of dura mater-- tough mother is what protects it. And the cerebrospinal fluid protects it. The skull is very thick. It protects it. There's really a tremendous amount of protection, but there are also a lot of things that can go wrong in a severe traumatic brain injury. [narrator] The frontal lobes and temporal lobes are most vulnerable in any type of brain injury. Damage to those lobes affects a person's executive functions, including analyzing information, problem solving, decision making and much more. The temporal lobes overlie two really important deep structures within the brain, the hippocampus that's really important for memory and the amygdala that's very important for rage reactions. So people with temporal injury are often, or can be, quite irritable. People may say things very impulsively or may do impulsive things that they would not ordinarily do. They may not be able to manage outbursts of anger because that sieve that usually helps them to react more appropriately may not be working very well. So they may say or do something that they later regret. [♪♪] [narrator] Three years ago, Brian Morseberg was injured in a fight. He was in a coma for three months. When he woke up, he found he could barely communicate. [Brian] When I first came out of the coma, my speech was atrocious. You think it is hard to understand me now? You should have heard me when I first got out. [narrator] Through rehabilitation therapy, Brian has improved his speech. Because of his brain injury, he is learning a new way to live. [Brian] Before my injury, I was always negative and always looking at why life wasn't easier. And after the injury, I don't ask. I tell myself, "Make it easier! Work harder!" [narrator] A former high school dropout, Brian recently earned his diploma. I graduated in the year 1995, and they held my diploma for that long. [narrator] Brian's parents help him with his rehabilitation. [Brian] My dad works with me on some of the physical aspects of my recovery. And my mom, she works mostly with my mental and emotional comeback. [narrator] And his son makes him feel like a very special dad. It makes me feel like Superman. When I go visit him, I take my manual chair and get on the floor to play with him. He then turns in the chair and gets in it and says, "Hi! Hi!" And then when I'm sitting in the chair, he runs around behind and tries to push. And it's so funny! [narrator] For Brian, traumatic brain injury led to a life philosophy he hadn't experienced before. [Brian] I may sound different, look different, but I still matter. In my opinion, self comes from here and here. Even though this is not all the same, this is constant. [♪♪] [narrator] There are three main types of brain injuries: contusion, axonal injury and bleeding. The first one is contusion to the brain, which is essentially a bruising of the brain matter where there is some bleeding inside the actual body of the brain. Then there is a diffuse axonal injury. In the brain the neurons actually have very long stalks that travel through various parts of the brain. And if the brain is twisted, if there is any kind of torque placed on the brain, these very delicate fibers can twist and they can break. And that means that you can get damage that's widespread across a large portion of the brain from this twisting motion. And the third kind of injury that you can see with the brain is a large collection of blood which can happen if a blood vessel is injured in the brain or if the lining of the brain is torn so that you can have large collections such as subdural hematomas or subarachnoid hemorrhages. [narrator] Those injuries may be mild, moderate or severe. So I'm going to be doing a kitchen evaluation today to look at your safety in the kitchen. [Goldberg] In a mild brain injury, typically the person has not lost consciousness or has lost consciousness only for a very, very brief period of time. The prospects for recovery relatively rapidly are quite good. And within several weeks, a good number of people have recovered entirely. The majority of people will recover with a mild brain injury within several months to a year. When we get up into the moderate and severe injuries, the difficulties become accordingly much more significant. [narrator] Severe traumatic brain injuries are usually caused by a high speed impact followed by 24 hours or more of unconsciousness. The first stage of treatment is to get the person stabilized medically. [Goldberg] There is a host of things that need to be treated emergently to save the person's life. Once that person becomes medically stable, the second phase of treatment may start, and that is in rehabilitation. Maybe a message of hope for everybody who is trying to get back on their feet whether from mild, moderate or severe that the appropriate treatment can really make an important difference in how people cope and to not give up on getting that treatment. [♪♪] How many is it? >>Nine biscuits. Nine biscuits? Okay. So I'll get the milk out. [narrator] The success of treatment depends a great deal on the individual and of course on the nature of the injury. Another important factor is support from friends and family. [Pepping] Coping with this kind of injury is one of the toughest things any person could ever be asked to do because they're really coping with an alteration in such basic components of who they are as a person that it creates a huge challenge to their identity as a human being and their sense of meaning and value. It can challenge all of their roles within a family and in the community and in a workplace. Place on a surface generously sprinkled with Bisquick. Okay, so I've got the board over there for you. >>Okay. [narrator] It's been four years since Allen House crashed his motorcycle. His helmet saved his life, but it didn't entirely prevent brain injury. [Allen] The short-term memory comes and goes. When it goes, something else fills it up and then it goes, and it's hard to recall what was there before. And she has been very good in keeping me on track to do different things. She uses a computer to print out a list from our calendar that today is Tuesday and at 10:00 you walk the pups, at 11:00 you eat lunch and take a rest. So that gives me an idea of what her expectations are or what's on the schedule for the day. And sometimes I stick pretty close to that and sometimes I don't. [narrator] Allen always remembers that he loves his wife Arlene and they both love their pets. The strong bond they share has made it possible to work through the changes in Allen and in their relationship. [Allen] I was depressed because of the accident and how it had affected me, and I didn't want to be a burden. I know that I made her feel bad a lot. I found that the worst thing that I could do was say that I wish I was dead because she didn't like that. But it was a real thought that crossed my mind because I didn't feel good about myself at all. He certainly has gotten better. But it hasn't been all sweetness and light. It's been tough. But I think that for me personally, it's been a journey that I certainly didn't ask for, but we've done it together. It's one of the most daunting things to say to someone, "You've had all these injuries, physical and cognitive and behavioral, "and now you get to try to tackle the toughest set of symptoms you've ever had "with a compromise in your intellect or your memory or your attention "or your endurance or your speed." "But we still want you to try to get it fixed, and we want you to take a productive place "back in society and not be overwhelmed by what's happened to you." People may seem to have problems with get up and go. They have difficulty with initiating activities so that they look lazy. And it's not that they're lazy, it's that the brain is not giving them that impetus to do what needs to be done. They can tell you what they have to do, but getting to do it is a whole other story. [Arlene] While you're doing that, I'm going to see that the soup is cooking. >>Okay. [narrator] As Allen relearns the tasks of everyday living, there can be frustrating moments. I think I usually cope by banging my head against it or getting into it more to see if I can figure it out. And sometimes I can and sometimes I think, "Well, I guess I'll try that later." [Arlene] Sometimes, yeah, you just walk away from it. We do a time out and you just kind of walk away from it for a while. And sometimes I get tired of walking. >>Yeah. But I can usually tell, and I'll come in and distract him. For the family member, my main message to them in the course of the recovery is patience, is patience. Recovery from traumatic brain injury takes time and takes treatment but oftentimes time. Sometimes the families kind of take it on the chin because all of the frustration and maybe anger or disappointment that people have is sometimes directed at the people that they feel safest with, which are their family members. And it's important for families I think to understand this, to remember that a family's job is to provide love and support and to help someone get professional help but not to do it all by themselves. They can't carry the whole world on their shoulders. They have to get help. This is the timer, right there. >>Okay. [timer beeps] What did I say? Eight minutes? >>Yeah. [timer beeps] [Arlene] Ask for help. Ask people, ask your friends, because if you're not taking care of yourself, you're not going to be able to take care of your survivor, your loved one. Recovery is possible, and I think that's important for everybody to know, that as hard as it is, people get better, people get a lot better, and life doesn't stop after a brain injury. Join a group when you're ready. You have to be ready to do that. Join a survivor group or a support group, rather, to have other people to talk to. You have to talk to other people. To be exposed to other people and to learn about their injury and be able to compare it to other people. I think that's been very helpful to me. [♪♪] [Bell] Traumatic brain injury is an injury that really affects the whole person. It affects everything they do because your brain is who you are. I just wanted to prove to myself and the world that I still had something upstairs. So I read and played chess and just did mental things to try to prove to myself that I could still do it. [narrator] Twenty years ago, Zsche Nevar was a high school honor student in eastern Washington. [Zsche] I was riding in a car with my friend, and we were coming back from Lake Chelan headed to Wenatchee, and my friend bent down to get a tape, drifted into the oncoming lane and went off into the rough on the oncoming side, swerved back into the lane to hit the oncoming car head-on. [narrator] He was airlifted to the trauma center in Seattle for surgery then taken to Seattle Children's Hospital for three months of rehabilitation. That was occupational, speech, physical, all the therapies. I was partially paralyzed--I think they call it hemiparesis--on the left side, so I had to learn how to use my left side again, had to learn how to talk again, learn how to walk again, learn how to eat again. So there was a lot to do. [narrator] Zsche returned to high school and graduated with his class. As a student, it was discouraging to be intelligent but not always be able to demonstrate it. It was the typical symptoms of head injury like executive function problems like organizing and keeping track of things and focusing, stuff like that. And I would intellectually know stuff, memory permitting, but the actual application of those skills was holding me back. [computer game noises] [narrator] The physical effects of Zsche's brain injury are nearly invisible now. And that makes it harder for other people to understand his ongoing concerns. [Zsche] As you walk down the street, nobody looks at you and says, "Oh, he's head injured." "No wonder he's on social security disability." "Why doesn't he have a job? He seems fine to me." And that's part of the insidiousness of head injury is that nobody can look at you and say, "Well, he's got a broken leg. There's no way he could be a construction person anymore." Nobody really knows where your problems are or what your problem is. [narrator] Zsche began studying philosophy to help him move on and accept his new life. [Goldberg] If a person can learn the idea of accepting their difficulties, I think it reduces down their emotional difficulties with the injury. At the same time, acceptance by no means means not to participate in activities, including treatment, that might improve their situation too. Really it's just making a new life for yourself. It may sound dumb, it may sound glib, but you just find you're not the same person, so you've got to find things that interest you now, not the things that interested you at another time or as another person or before. There's one person I can point out that I worked with some time ago who was a fly fisherman, and his great delight before he had his brain injury was to tie flies, and they were beautiful works of art. After he had his brain injury, he no longer had the use of one of his arms, and it was very difficult for him to see what he was going to do in life because he could no longer work, there were many things he couldn't do and he couldn't tie flies. One day I walked into my office and went into an examining room, and the entire office was filled with canvases, beautiful oil paintings all around the office. And he was smiling and sitting there and saying, "Look! I love to paint!" So he found a new outlet that was just wonderful for his creativity and was a changed man. [narrator] With help there's more to life after a brain injury than simple survival. It's always a new beginning. You just keep going moment by moment or day by day and you dare to think that what you used to think was impossible might be possible for you to do if you just keep going. [♪♪]

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Meet a handful of people with brain injury who give courage and tenacity new meaning.

Transcript of this video.

From the University of Washington TV/Research Channel. Used with permission. All rights reserved. www.uwtv.org.

Comments [18]

In or about Aug of 2010 i was working on an electrical system for a customer and was told that electric had been cut off, when reaching to pull down cut off and access wire it hit me with 220 volts at which time i remember the sensations of the shock and the sensation of falling with free fall thoughts almost surreal, with quick flowing fragments of thought and ramifications of what had just happened. Today August 28th I still have moments of " where am I" and nausea, with a moment of grief. I know and sometimes prepare for things that need to be done but when the time comes to do it i am lost, to confusion and cant put a handle on it. Today i read this article and understand what i read and im going for help, Just thanks, i hope i remember. making a note. anxious

Aug 28th, 2014 7:57pm

A very inspiring video. As a survivor of an mTBI my personality changed as did other aspects. Assaulted 4.5 years ago, I didn't make the recovery expected straight away. I have had to re-learn stuff as my executive skills were affected. I've had accept & live with the 'new' me. It's hard, really hard. My Neuropsychologist has been the greatest help. Everybody with a TBI needs to see a video like this one. Thank you. Sue. My email mazurigold@yahoo.co.uk

Aug 12th, 2014 4:29pm

Sandy I spoke with HABIT Hereford Acquired Brain Injury Team who saughted all that out for me . There will be one in your area.

May 23rd, 2014 10:45am

My husband suffered a burst brain aneurysm in Jan 08.  He was left severely brain damaged, he has no long or short term memory.  We have 4 children he doesn't know.  Sometimes he thinks I'm his mother, other times he thinks I worked with him.  He receives Social Security Disability and his plumbers pension which makes us not qualified for any sort of help.  I am doing this alone, with the help of my daughters when they can.  I am only 59, this is not how I thought I would be spending my later years.

Sandy

May 22nd, 2014 1:38pm

Then you need to see a doctor. Do you have any changes in your vision?

May 22nd, 2014 1:01pm

i'm 53 and 4 yrs ago sufferd in lay mens terms water on the brain and now i have a chairi malformatiomng I was wondering if this is a TBI thanks .

May 22nd, 2014 11:29am

Sept 16TH 2000  from a car accident I was hit broadside,TBI, changed my life forever, In a comma a month In The Hospital 3 months Rehabilitation to walk & talk again,My daughters were in the back seat, I feel blessed they had no long term injuries,My personality is different & my memory of recent things is not as good. I'm happy I have my long term memory of my children as they have grown & my marriage, they recommended a journal I have learned to love writing.Wrriting down is Important.I feel very blessed & so grateful To my Lord & Saviour for giving me my life back. Improving everyday!Still have a numbness feeling on my left side, as when your leg falls asleep.Nurologist says

May 22nd, 2014 11:17am

Nice to hear from a couple and to see the compromises, challenges  of a "we" situation, and the patience for a better tomorrow.  Thank you!

May 22nd, 2014 10:53am

I got punch in the back of my head 4 months ago i get really bad headaches thru out my whole head. idk what's wrong wit me

May 20th, 2014 5:33pm

It is so hard, I know, I finished college and was hit by a drunk driver without insurance. I suffered a TBI and fell into a coma lost memory and my career. I am now totally disabled and I will never have life I dreamed of. It is so hard. I am volunteering now and it helps some. I wish you the best. I know believe me I know how you.feel. Linda

Jan 28th, 2014 12:39am

I suffered a traumatic brain injury in 2003. While I understand how fortunate I am to have survived, how do you manage physical and emotional pain everyday for 10 years? Even after getting through the SSD process, how are you expected to survive on that money? I lost my family, my home and my career, I'm left with pain and hardship.

Nov 23rd, 2013 8:37pm

As a survivor living with TBI I must say this video was AND is just what I needed. THANK YOU<3

Aug 15th, 2013 12:33am

my ex husband beat me badly n 1988 n since then my life has changed I was n the hospital for days I had bad head trauma n when I get upset I have a SEIZURE I dont no wht to do I have a wonderful husband now thnk GOD but I still hve a long way to goTchalmers@centurylink.net

Oct 12th, 2011 11:07am

I have had 2 head trauma injuries, one in 1997, which was misdiagnosed and never tended to because I lacked insurance and HEY I was still ALIVE right? Wrong!!!! My personality changed and I was in prison for 14 years with myself which made so many others miseable around me, almost costing me, my husband in 2009, from the lack of understanding "I wasn't me anymore". I just recently had an ATV accident which caused multiple fractures to my skull. I was the happiest person to have survived the injury but within 2 months later, I'm fighting depression, uncontrolled emotions and just questioning my ability to continue with this INTERNAL PAIN - nobody understands what I'm fighting everyday because it's not an external wound. They see ME as a MESSED UP person NOT my injuries that I suffer from. I just went to a Chiropractor, very helpful and has referred me to a counselor and and herbal specialist. I know I will always have the injury and symptoms but I needs support and the EVERYDAY JOE isn't gonna give it to me because of the lack of knowledge people have about TBI.

Sep 30th, 2011 1:08pm

my husband has tbi and we cant get and help from anyone or even any orginizati so ons. so how do u go on homeless waiting for our disiblity to com and then how do u afford a place on that when all the rent is so high here. im lost for words and soon to be homeless dont know how to make it at all. never been this bad off.

Jun 15th, 2011 3:51pm

I am so angry that I can't communicate properly. I cry constantly and the state advocate doesn't seem to be helping me in getting help. I have gone through some attorneys because I was injured by a drunk driver at work. I don't feel like there is any hope out there. I cry constantly, have burned through all of my savings and cannot cope with life.

Apr 28th, 2011 3:11pm

I suffer from a "mild" TBI after my brother's corvette hit a tree that went thru my side into my head...I can so relate to the problem of this invisible injury. One thing that totally annoys me is the term "mild", meaning that my skull remained intact, only cracked. what a misnomer! Mild is not mild...it has changed my life. Almost 7 years later, I'm still getting to know who I am now and trying to love this survivor. I've come a long ways...but I'll never be able to go back to who I was before the crash. so many people do not "get it". I've learned to let go of that problem. I'm still moving forward, just in a different direction than planned.

Dec 28th, 2010 5:14pm

Fantastic article and video. When one is not partially paralyzed and can still talk and laugh, it is hard to convey to others that something has changed. After a high speed head on collision my face and head had no sign of trauma thanks to the airbag but a month later, I finally told others about what had changed. I was never sure anyone believed I was doing anything except looking for attention, even the doctors. After five years, I am still building my abilites back. I am one of the lucky ones but I now recognize this tbi area of need for everyone to be aware of.

Sep 11th, 2010 2:15pm

 

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