Yesterday (this was actually March 9 but I’m still writing this post :), I met with a cognitive therapist. I had done this earlier in my rehabilitation, but I found it to be a waste of time. My previous therapist worked with people who had major damage. If you read to them three to seven words, then asked them to repeat it, they weren’t able to do it.
I can repeat things back initially, but in five minutes, I can’t remember half of what you said. In ten minutes, I can’t remember 70% of what you said. The extent of this issue varies dramatically by how stressed I am, how much sleep I’ve had, how focused I am, if there are distractions,etc.
This is so stressful to me.
My first therapist didn’t seem to understand my frustration or the variability of in my symptoms.
Because my previous therapist recommended it, several months ago, I bought this really nice journal that I could fit in my purse and carry around with me so that I could keep notes. I did awesome with it the first week to 10 days, after that I have no idea where it went. NO CLUE!
I’ve looked for it. I’ve forgotten about it. Then I remember it and look for it again.
It’s so frustrating because I have no idea where it is, and I wrote down several things that I needed to remember, but now that I can’t find it, I don’t know if those things were really that important or not.
I had expressed to my original therapist that I had no problems with writing things down, but remembering where I wrote those things or what I did with the list or paper is the issue. She suggested the notebook, and as I mentioned above, this was a huge failure for me, and a continuing source of frustration and anxiety.
I wonder what the freak happened to it. Did it enter the Twilight Zone? Did my kid take it to school? Did Tom put it away somewhere? Is it shoved in a dark crevice of my car? (Notice, I how I’ve mentioned every other person as being responsible for it except myself. Despite the fact that I’m the one with brain injury, it is EXTREMELY difficult for me to accept that I am the one who has a deficit.)
You have no idea how much this eats at me. Thank God, by the end of the night, I will forget about it completely until the next time I remember it.
It’s frustrating for me that these things are happening. It’s not just not being able to remember but the frustration of being constantly distracted. I’m at a public library right now, and there’s SO much noise. There’s the ding of the elevator doors. There’s people coughing, talking, flipping through books, even the sound of my own typing is driving me crazy and causing me to lose focus.
I used to be able to study in the extremely busy passageway in the basement of a major university, and I could shut out everything without issue. I could go into my own little world in my mind, close the doors, and concentrate on physics or organic chemistry for HOURS. Literally, I would be able to do this for 8 to 12 hour stretches with just brief breaks. I was like a meditating Buddhist Monk. Now, I have the attention span of a fish, and that might be an unfair correlation on behalf of the fish.
I really thought when I started to see this new cognitive therapist that it would be useless. What could this person do to help me? How could she possibly know what I’m going through? I was very on guard prepared to argue my case on how EPM works and about how reading back simple lists probably wouldn’t help me get to my goal. I felt absolutely certain that because I’ve run into so many doctors who have raised their eyebrows and have doubted my sincerity, this would be just one more person that I would have to convince or teach about my condition.
Yesterday (03/09), I was having a bad day, and I certainly wasn’t at my best. After my appointment, I left feeling relieved. Yes, relieved! This person gets it. She pulled out a sheet of paper that described what I’ve been experiencing to a T. This made me feel so relieved. I mean she knows what I’m going through. She understands what problems I have, and she’s going to try to help me get back on track.
More excitingly, she understands that I was a very capable, intelligent person before the injury, and she knows what I want to accomplish in the future. She’s looking at me as if I have a chance at still achieving my goals!!
Not only is she looking at me as if taking and passing the MCAT is absolutely achievable, but she worked with someone who was an ER doctor who had a brain injury and granted he’s no longer an ER doctor, but he’s a successful GP. This gave me a huge sense of hope.
I have not had any doctor at this point be able to do that. TRULY!! and I’ve seen dozens of them for this problem, but what she did for me in the two hours that I was there was give me a sense of hope. THIS MIGHT WORK!!
Let me try to explain a bit more about this. I’m not saying the doctors that I’ve seen previously to this point were just a waste of my time or were uncaring(some were, some are absolutely awesome). Some have really tried to assist me, but they didn’t have any plans. They didn’t pull out diagrams and wall maps with a step by step solution on how to get me back to where I was previously.
From almost every doctor, I’ve gotten a response of: we think you’re going to be just fine. Just give it time.
I’m going to try to give you an idea of how this is such a screwed up way to handle an injury. If someone had a broken leg and you knew it was broken, would you tell them; you have a broken leg. If you wait about 6 to 12 weeks, it’ll heal. Then send him down the road?
NO! They’re right. The leg will heal, but will it heal correctly? No doctor would treat a patient like this. Once they determine the injury, the make plans. They either do surgery, put it in a cast, give the person crutches, and steps on what to expect and how to help it heal. Further, they asses the person over time to determine if they need physical therapy or additional steps to make the best recovery possible. They don’t simply state, well your leg is broken; have a great day.
When I left the hospital, I was walking into the unknown. Up to this point, I did not have anybody who said, this is what you need to do or I can help you get to where you want to go AND she knows where I’m going. She knows what I want to accomplish. She understands that I’m not just wanting to be able to sit down and read a book without forgetting what I read the day before; she understands that I want to be a doctor and that I need to have the ability to think on my feet.
So, what does this mean. This means my friends, Don’t Give Up!!! It’s been 9 months since I received this injury, and it’s been extremely difficult, but you don’t know what lies ahead, and you don’t know what’s going to happen next. Or if the next doctor’s appointment, is going to give you the person you need in your life who will reach out their hand and help you get to where you need to go. HAVE HOPE 🙂
Finally, I want to leave you with the information that my new therapist has given me because if it doesn’t hit the nail on the head, I don’t know what will.
Ok, folks, I spent over an hour trying to find a link to this doctor’s book, but I couldn’t find it, so I’m going to list some of the information from the pages that my therapist gave to me:
Excerpted from: “The Unseen Injury”, by Thomas Kay, Ph.D-neuropsychologist:
Statement of the Problem- We (a group of rehabilitation specialists in NY University Medical center) discovered that these patients appeared fine until they attempted to resume their responsibilities at home or at school. When they did so a significant number experienced great difficulty. They complained of inability to remember, concentrate, organize, handle a number of tasks at once, and get as much work done as efficiently as they used to. Their relationships with family, peers, and bosses often suffered and they developed psychological problems. their doctors were unable to find anything wrong with them and they were thought to be having psychiatric problems-or worse yet, to be faking.
Diffuse Brain Injury- there is evidence that the subjective complaints and cognitive problem encountered by some persons after MBI, may have an organic basis. This microscopic stretching and tearing occurs because of mechanical forces. (In toxic and hypoxic injury, nerve impulse transmission maybe interrupted/damaged).
Because of the very nature of diffuse MBI, the resulting deficits are not specific to particular domains of cognition (such as language, perception, etc.) Rather, it is the overall speed, efficiency, execution and integration of mental processes that are disrupted in a general way.
Nature of the Deficits- A.) Speed and capacity of information Processing persons with diffuse MBI process information less quickly. They react less quickly, especially when faced with a choice, and simply take longer to mentally process most tasks. This goes hand-in hand with a reduced capacity to process large amounts of information at any one time as fewer details can be handled simultaneously. The threeshold for becoming overloaded with amount or speed is significantly lowered.
B.) Complex Attention Most persons with MBI have great difficulty splitting or shifting their attention among tasks, and can not efficiently execute complex operations that require multiple simultaneous in temporary abeyance. Similarly, flexibility of thinking may be reduced. there is a failure to shift to a new strategy or grasp alternative solutions, when the one presently being employed is unsuccessful. As a result of the above difficulties, there is often a decrease in complex problem solving.
C.) Learning and Memory: Additionally, failure to effectively sort out, organize and quickly store complex incoming information often leads to “missing” obvious details, or the inability to recall accurately and becomes experienced as a problem with “memory.” As a result, it is much more difficult to learn new routines, or large complex amounts of new information. There is great difficulty storing and retrieving NEW information. This may be auditory information, visual information, or both. Old information is intact. Most commonly, there is also a deficit in the spontaneous recall of newly learned information.
D.) Integrative and Abstract Thinking Because of its highly intergrative nature, there may be deficits in the quality of abstract thinking. The ability to spontaneously make connections between ideas may be impaired and interpretation of the statemetns of others may be either overgeneralized or too concrete. There may be difficulty expressing thoughts concisely and accurately. Ideas may be expressed in an imprecise, roundabout, wordy manner. It may be difficult to find the right word resulting in deliberate speech with numerous pauses, at times, “talking around the word”.
E.) Executive Function The process by which we plan, organize, initiate, monitor and adjust our thinking and behavior. The person with deficits in executive functioning may have difficulty setting realistic goals. They may be unable to efficiently plan and organize their thinking or behavior and this may manifest itself most dramatically in new and unstructured situations. they may be deficient in initiating new activities, once they are planned, and may be misperceived to be unmotivated. They may fail to notice when their performance is off. They may act impulsively or erratically, having difficulty modulating their behavior. Finally, executive deficits may take the form of failing to complete tasks as things are abandoned and never brought to completion.
F.) Emotional and Behavioral Control Damage to the orbital under sided portions of the frontal lobes, and basilar and medial aspects of the temporal lobes, can result in the disruption of emotions and behavior. There is a disruption in the balance between lower emotional impulses and higher rational cortical control due to the disruption of nerve connections between these two areas. Emotions may suddenly erupt. The person may seem irritable.
There you have it folks. This describes me almost perfectly. I really would recommend that if you are suffering from a brain injury to print out this post and take it with you to your doctors appointments, give it to your friends and family, etc. I think it helps for them to realize, you aren’t making these things up. It’s coming from an outside source, a legitimate neuropsychologist.
I also want to stress that this does not mean that you will have all of these issues or that you will develop them in the future if you haven’t developed them as of yet. Keep in mind this is to give you an idea as to what has been seen in brain injuries.
Hope this helps!
Update: This person found my site and after reviewing it, I really found the information extremely beneficial. I recommend checking it out: http://brainhealthresources.wordpress.com/2012/05/09/there-is-help-for-battered-athletes-and-tbi-patients/