Stories of Cognitive Deficits
The following are stories of real life survivors of brain injury. Clicking on the titles will take you to their actual story.
When I went back to work, the difficulty in deciding (what to do when)
Add stress to that equation and the cognitive failure is predictable.
If I was in an office and I could pay attention to the loan and not hear all the noises, I could (perhaps function) but the problem is my body has a physiological stress response in that environment. Like if I’m in a restaurant even though I’m totally fine, my body is stressed. My heart races, I sweat, I become like afraid because I don’t, I don’t know what I’m saying and I know I don’t know what they’re saying. There’s all this information coming in and I don’t know which of the information’s important to me and which is not.
If Angela can’t work, can she at least be a wife, a domestic partner? Sadly, this is another role that despite her best efforts has proven to be too cognitively and emotionally challenging for her.From Ambitious College Girl to Coma SurvivorBetty states that she sustained a frontal lobe injury, occipital lobe injury and paralysis on her left side. The injuries resulted in cognitive disorders.
Most cognitive challenges are far more subtle than what an Alzheimers or severely learning impaired individual might have.Much of the brain may be unaffected by even a severe injury, including long term memory and communication ability. Both Angela our first case study and Betty are perfect examples of that. Betty describes a number of classic cognitive problems. Sequencing (putting things in order) and memory are ongoing problems. Like most survivors, she has learned to write everything down. Driving is one of the most troubling aspects of disability for a wide range of brain injured individuals. It is a uniquely cognitively challenging task, requiring intense attention, visual perception, multi-tasking, capacity to deal with stress and coordinated sensory, reflexive and muscular control. It took Betty about three years to get her drivers license again after her TBI.
Many of Chris’s ongoing deficits are the classical cognitive issues one would expect to find after a TBI memory, language, speed of information processing. Others are classic frontal lobe problems, such as the executive functioning problems that made it so hard to get to work on time. Emotions and mood are big ongoing problems.
At three weeks they think you’re stable enough to go home? : “Yes.” But you don’t stay there? : “Yeah, I couldn’t. Cognitively I didn’t feel; I didn’t even know who I was. I’d look in the mirror – I didn’t recognize who I was. I didn’t realize who my family was, which disintegrated in a quick amount of time.”
How is cognitive therapy different from speech therapy?; ‘Well, I was having some, I guess you would call them environmental issues. And a lot of them were normal things that you can fix. Like my memory – if I parked my car, I couldn’t remember where I parked it. And so we practiced. I wouldn’t remember where I’d park in the mall. We would walk in the store and walked around and I had to find these different things. I mapped them out ahead of time. And then when we were done we’d walk out the door and (the therapist said): “All right find your car.” And the first couple of times I didn’t do so well, but it’s retraining yourself to remember. And then as far as the behavioral, coming up with like, kind of just plans, for myself, little time outs for myself. And I take them to this day and I push myself. And everyone that I work with knows that, if I don’t call you back it’s because I’m overwhelmed.”One of the things Craig said earlier, about not feeling guilty, meshes well with the concepts of this Part. So many judgments are made about people with TBI, that if they would just try harder, show more will power, they would be just fine. But what such attitudes don’t account for is that it is the very part of the brain that gives us will power, that often suffers the disabling injury, especially in motor vehicle wrecks.
What problems are you having with your hearing?; ‘Right now it’s not too bad but originally it was I guess you could call it Superman hearing. I could literally hear like bugs crawling on me. I mean, it was so accentuated that I could hear a pin drop and of course when you have a stimulation problem to be that sensitive to sound, it was really hard in the beginning, especially having two young kids. So you can imagine I was nutty by the end of the night.” Did anybody ever suggest that the problem wasn’t your hearing but the filter, the inability to filter out all of that noise?: “No. No, I never really dealt with the audio part of it and to this day I still, when I gets tired it feels like it’s clogged almost like there’s rocks in it.”
So the Moving In is where you’re at, at a certain point, you’re going to get, you might cognitively get better, you might mature or whatever. But you have to accept who you are and make the best of what you have and that’s what that is. I mean, you may not be able to do what you did, but what do you want to do, what do you like now?”
As our brains are essentially all that we are, it is hard to argue that anything is completely irrelevant to assessing the nature of dysfunction after brain injury. This fact, however, has been greatly distorted by the insurance industry as they misdirect the post-morbid focus from the big picture issues of organic changes in the brain, in an effort to find character flaws in the injured person upon which they can blame all subsequent disability. Anyone who has ever been involved in a brain injury claim knows the truth of this statement. While there are situations where prior alcohol or drug use could contribute to the post injury challenges, not even in a mild brain injury case can that ever be the proximate cause of the
DJ could not be a waiter anymore. Not only would he have trouble remembering orders, the attentional demands, as the pace and the noise got greater during rush periods, would push all of his cognitive functioning to its breaking point.
Another problem with cognitive functioning after brain injury is with multi-tasking, which can also impact short-term memory. I asked DJ to give me some examples of his problems with multi-tasking: “I would say simply getting a phone call while grocery shopping. I mean, I check off my list. Multitasking, riding the bike and maybe getting a call and maybe a mom I know has called me on occasion to say they’re coming in town or, you know, a package is being sent, expected on a certain day and I don’t stop to put on my calendar. Um, being out in the community and somebody gives me two and three and four thoughts. I need one at a time. I have to stop them and say, “Hold on. One thing at a time. I can’t figure out your answers.” And before I got hurt, I could do four tables with a kid over there that needs a bottle heated up, a guy over there that needs another beer or somebody over there, the steaks not cooked right and all that stuff got filed and it just flowed. And, I know for a fact I could not wait tables and be in that environment any more. The noise, the distraction, the stimulation, I just think it would be a – plus the dizziness. I think I would drop a tray. I would trip.”
Without question, DJ needs to have a sleep study done. The lack of structure in his life and his role on Facebook invariably mean that his daily routine may always be a bit unpredictable. Still it is clear that despite the sleep medication that he is taking, he is not getting the restful sleep that gives him a fighting chance of consistent cognitive function.
The result, a severe brain injury that has left Doug with very serious physical limitations, yet far less cognitive problems that might have been expected. ” I broke both my legs and I suffered a brain injury because of it. I broke both my legs, had one of my bones come out of my leg and I suffered a coma – I was in a coma.”
Elizabeth states; “I remember some people. I couldn’t get their names all straight, but I knew them by seeing them. Some I called the wrong name. My wonderful husband, I called him Jeff, or John instead of Jay, and I knew my mom and dad, I got them right, and one of the ladies who is, she works in a hospital and she’s a cousin of Jay’s family and she’s absolutely terrific at doing her job, and she came in and I called her the wrong name all the time. I knew her and I loved her, but I called her the wrong name all the time.”
Regardless of which of her two injuries has left her disabled, there is not doubt that she has been left with a long list of cognitive complaints. She explains: “With the way my injury ended, well I shouldn’t say ended, they never end, with the second one, all of those things together have gotten worse for me. It’s understanding things. I can ask my question four or five or six times before I understand his answer, my, my wonderful husband, and it’s the same question.” In our interview, many of her cognitive problems weren’t apparent. She explained how in day-to-day function her problems are worse, especially when someone else is doing the most of the talking. Elizabeth state; “The problem is since my accident not understanding, you can ask me the questions now and I can answer the best I am possible to answer, and with my injury, the second I walk out that door by the time we get home my husband will probably repeat one or two things you said or asked me and I won’t get them out of my head straight again.” Elizabeth explains how things can gt mixed up in her head and how writing it down will help her to understand; “A lot of it depends upon what it is. If it’s someone that you love is hurt or there’s an accident ,someone that you care about (then I would remember better.) I have to write things down because if I don’t understand it the right way in my head and it, and I can’t connect with it and it comes out wrong, it can totally mess up everything and that’s the biggest, the biggest problem. “
While it is potentially misleading to make an evaluation of absentmindedness, decision making or other frontal lobe issues based upon self report of a TBI survivor, his mother reinforced that in general, his cognitive complaints are resolving. In some material ways Fred believes that his life has been more focused as a result of his brain injury and the therapy has given him a structure and goals that he did not have before. Unfortunately, his normal day doesn’t involve as much structure or cognitive stimulation as would be ideal.
She manages her cognitive problems best when she accommodates for her limitations.Helena describes her limitations; “My cognitive deficit’s are like a colossal case of ADD. So I’ve had to learn how to prioritize, and I find also, and that’s why, that’s why this was so good, and also the applications that I had to make for disability, etcetera, etcetera, that will take me four times longer than it would take the normal person. I have to read out loud most of the time, in order to comprehend it; I have to check my work three or four times to make sure that it’s correct, that I haven’t left a piece out; Like when I’m writing something longhand, I can’t tell Ms and Ns anymore, so unless I write very slowly, I make lots more mistakes in my writing. It starts off like letters and ends up, you know…
When asked “What about problems with thinking?” Ian states; “There are some things, they come to me within an instant so to speak, and then there’s other things I just got to stop. And okay, now he said that was on such and such a street. And I’d think, well, where’s that located on? Oh, that’s over there. And it used to be before, oh, I’ll be there in five seconds. When asked about getting lost Ian responds; “I don’t really get lost. I still have what you might say â€œthe compassâ€ in my head. But, for some reason if you told me a street name, I’d look at you kind of funny. But if you told me a building, sometimes I’ll know where that street is and other times I won’t. And sometimes I just don’t even know the name.”
The most noticeable deficit that Kevin has is his fluency with language. As can be seen on any of his videos, his answers while always responsive and generally logical, were often delivered in a halting voice. I asked him about his problems with speech: “Like sometimes I would stutter, like sometimes like I can’t get a word out or something like that. Even now, even right now, not right here but you know like yesterday like at a restaurant I couldn’t say a word on the menu you know and I kept stuttering like you know
I’m going to do this in a couple phases, so first – describe the nature of your relationship with your parents in that first six months you’re home.: “I guess my relationship, it was more like an infant. I had what I call an adult crib in my parents’ home. My bed had side walls, it had to be pulled up and I had sort of a straightjacket that they had to put on and tie me to. It was all gentle, so that I would be safe because I used to try to crawl out of the bed. So they had to take care of me like an infant when I first got there.”
Now you’ve mentioned a couple of examples of things that you’ve said “I don’t drive the last two years, I’ve – you know, – haven’t been doing this.” Um, “I’m having problems that my friends also have, but you’re, like, through, between a line saying, “But I know mine are worse.” Uh, do you see that happening?: “Yeah, yeah, now that you say that. And yeah, I guess, I guess, uh, because I don’t drive as much that I am cognitively more decreased. Yeah, okay.”
Do you feel like you are cognitively worse that you were three years ago? Five years ago?: “No.” Now you’ve mentioned a couple of examples of things that you’ve said “I don’t drive the last two years, I’ve “, you know, “I haven’t been doing this.” Um, “I’m having problems that my friends also have,” but you’re, like, through, between a line saying, “But I know mine are worse.” Uh, do you see that happening?: “Yeah, yeah, now that you say that. And yeah, I guess, I guess, uh, because I don’t drive as much that I am cognitively more decreased. Yeah, okay.”
In this book, my memoirs of recuperation from the car accident. I am sure you will find a new compassion for the pain, confusion, anger and hatefulness I went through. When I finally learned how the normal world lived, I began to appreciate any abilities I had that even resembled normal.
That was sort of like a flashing “a strobe light?”: A flashing. About two years ago, if I remember right, the transformer in front of my parents’ house blew and we had all, we had cops, police officers, we had emergency units, we had fire units.
It affected me so bad I just had to go downstairs and lie down and get out of light and get away from everything.”
Give me an example of the change in magnitude of your cognitive issues.: “I guess the, the best one is, I was taking a course, it’s called Eco Sphere in Crisis or as I like to call it, Idiot Biology. We called that Environmental Biology at where I went to college. Well, all we did was talk about was the pill and a bunch of other stuff and finding out that the professor and his wife were both fixed. But I had problems in that class. Even though it was really simple, if I read the book I was doing very well in it, I went on all the field trips. Then I had lecture which was kind of hard for me because he would touch on the stuff we read and then expand it. I was lucky to have a friend of mine in the class, he was also in my individual classroom, he had the person talking, too, and he was real easy because he could understand what was going on. So if I gave him a weird look like, what’s going on, what are they talking about? He could put it into basic terms and slow it down because my brain. Most people talk at a normal pace which can be too fast for me and I don’t understand what they’re saying and I can’t get it all.”
What were the problems you had at Sears?: “Sears, well, one problem, the biggest problem I had was management.” Such as?: “For some reason, I don’t know how it is now, because I haven’t worked since 2007, or 2006, but up until about ’92, everybody had their set way that you had to do things. And I have a hard time with that because I can’t follow what they want to do.I have to find out on my own how to do it from what I can do. And management at Sears didn’t like that because I wasn’t following their scripted program.” Where the SSA mandates the finding of anyone who can’t do the following, deficient of the requisite work capacity: â€œUnderstanding, carrying out and remembering simple instructions. - The SSA also recognizes that in addition, an individual must be able to remember work like procedures. Further, they must not only be able to understand “short and simple instructions”, they must be able to “carry out” those instructions.When Michael couldn’t do his job the Sears way, he wasn’t going to be a Sears person for long.
Give me an example.: “I guess the best way to example is go with is from the other way. When I volunteered everywhere, since I wasn’t an employee, they gave me a list of instructions of what I couldn’t do. But if I messed them up they would just talk to me. They wouldn’t write me up or anything along that lines to where I would lose my job.” :Another criteria is the ability to remember and then to carry out short, simple instructions. Do you have trouble with that?: “Yes. When I was working at another job I quit back in Louisville. I was working for Big Lots and the manager, I guess, when they hired me forgot that I was disabled. And so she was getting actually pretty tired of me coming up to her and go “and what did you want me to do? And where was this located at?â€ And finally one day she must of got really tired of it and said okay, – Mike, you’re definitely, you’re going to work with me. I’m going to show you how to do things.” And the way she said it and the way the tone that I took it, I ended up saying a few nasty words and left.”
One of the things that you mentioned that you did have some trouble with at work was changing routine. : “Yes.” How important is routine to you? ” I like routine with some things. For example, when I need routine is when it comes with my kids. If, when I have to take them to school and pick them up and then, there are certain routines that we do – homework, other stuff. But say for, like, around the house, I have a hard time following routines here specifically.” Do you have problems when you do something that’s routine and then something changes and gets off kilter?: “Very much.” Explain.: “Example: I just took the kids to school, come back home and they need, I need to go pick them up because they’re, they’re sick at school. That throws my routine off for the day, even though I don’t have too much of a routine. But now they’re coming home. I have to watch them, I have to take care of them.”
Where is she at in terms of her cognitive function at what would be the end of May or what would have been fourth grade? Is she seeming to get back to normal?: “No.” What’s abnormal?: “She would ever finish a project â€“ couldn’t, never, even though I have activities in on the table she’d start coloring. First she just held the crayon and looked at the page and then it got better where she started coloring but then it stopped. It would only be one object or a half of an object or not even a half of an object. And then she got to the point where she was destructive where she would draw, because she was really good at coloring and drawing and she’s pretty fussy about it, that if she went outside the line or because she knew, I think it was how it wasn’t looking like before, she’d rip it all up.”
When she’s getting the tutoring, what are the problems that she’s having?: “I think the brain to hand issue; the writing is difficult. She can verbally express what her answers are quite well. Sitting still was very difficult for her, to sit in the kitchen with this nice tutor who has had a son who had a brain injury himself that actually passed away. She had a very difficult time just sitting still and staying put. It was frustrating for all of us and frustrating for herself too because , c’mon. We used to say “well you used to do this. You used to love to read. You used to like bananas” or, you know, whatever the situation was. I had to realize, you know, mourning the loss of the daughter I had. And it took me quite a long time because I wanted that daughter back.”
Quinn’s wife discusses the problems he had after his early release: “He then, it was about probably 1:00 o’clock in the morning, and I was trying to get him to eat something, before we went to bed. So, I sat him right here, where I am now, and gave him a little cup of applesauce and a spoon; and I turned around to do the dishes, and he dropped the spoon. I heard the clank on the table, and I turned around to ask what was wrong, and he couldn’t pick up the spoon. He couldn’t talk, he was just slurring and talking gibberish, and wasn’t making any sense; and I immediately called 911, and had him brought back to the hospital; however, I did not go back to the hospital that had discharged him, cause they were not really listening to his symptoms before that.”
So you were working with the speech therapist as far as relearning to use your brain?: “Yeah.” Talk to me about that.: “She would give me like three words; bird, cloud, car, and then ask me to repeat those three words back to her, and then work on something else and then come back and ask me to repeat them, and then at the end of the hour or something ask me to repeat them again. What used to be simple tasks was unbelievably hard, because I couldn’t remember. In the beginning I couldn’t remember two out of three words, yeah. And learning how to associate words with something in my head, that I could remember them, and, you know. She had me write a story; pick a subject and write a story. The subject was a car, and I could only get out, you know, two or three sentences.”
The defense tactic in every brain injury case is to blame all deficits upon preexisting emotional issues, as if a person who is depressed can’t be severely injured by trauma. But being depressed does not immunize a person from brain injury. Brain injury can strike anyone of course. What we know about brain injury is that pre-injury (what is called pre-morbidâ€ for before the morbidity) mental and physical vulnerability, will make the brain injury that much harder to deal with.Quinn’s is the perfect example of that. For a period of time he was unable to take the medicines he needed before he got hurt. Thus, he wasn’t just dealing with the injury, but also with not having medicine he needed to keep an emotional equilibrium. What could have made it even worse, but didn’t for Quinn, is that the injury could also have changed the chemical balance in his brain, making the helpful medicine less effective.Thus, never be drawn into the fallacy that problems after a brain injury have to separated out into causative bubbles, separate and distinct. Those with the greatest pre-morbid vulnerabilities are more like to have further troubles, caused by the traumatic damage.
Is there a higher level of functioning that hasn’t redeveloped yet, involved in the distinction between $100 and $500 that
hasn’t come back yet?: “Probably. I mean, as it ended up we let that contribution go, as he did it, cause he felt it was worthwhile and understood that if money did get tight, he would have to make some sacrifices; and he agreed that that was worth it, and he wanted to continue with it.”
Do you have difficulty actually deciding to go forward with activity, actually starting something. : “Sometimes, yes.” Examples? : “Figuring out which to do first; the groceries, the bank, gas in the car, taking a nap.”
Can you fix a car?: “Something easy. I mean I have kind of problems with like I can’t diagnose and things like that and a lot of the things that are just probably common knowledge I’ve forgotten. I guess maybe because I’m one of those people that have to reintegrate things over and over and over before I’ll actually retain them.”
I took some time with Steven to focus on the process of learning to fix a car and the process of actually fixing a car. The goal was to learn something about what it’s like to learn as a brain injury survivor, as well as to helps us understand how deficits interfere with productivity. So you’re taking classes to fix a car. Where do you feel you’re falling behind the other people in your class in terms of what you’re able to learn?: “My retention rate was a lot worse than everybody else’s. I retain whatever information I needed long enough to take whatever test, I need as long as I repeatedly drilled it into my head before the test. Then took the test and I would pass it. But if I had to take that same test, say, the next week, I’d probably fail it.” Now, is your problem with pace partially a cognitive problem and – or partially a physical problem?: “I’d say it is probably 50/50 because I over think myself a lot.”
You have been through the difficult effort to learn at trade in an area that you had some interest in, auto mechanics. Do you see any strategies in terms of accommodations, teaching skills or memory aids that could make it easier for you to do that regardless of how long it took you to be able to get the car put together and not have parts left over?: “This kind of filters over into every aspect of everything I do. I need a lot more detailed and specifically organized laid out steps that I should be able to follow than the average person. You can just tell somebody this, this, this and this, get it done. I need all that in-between stuff that they’re supposed to just automatically know and be able to do on their own.”