Executive Function Disoder. Information plus Testimony.
Guest Blogger: Hiro Nishimura
It has been a while since I have had a guest blogger. I have been really out of routine here, but I am excited to have this blogger for you guys. She is a huge inspiration of mine, and someone I can really relate with. We have been following each other on Twitter, and she is a great friend of mine. I do not want to give away her inspirational story, but you do need to follow along on her blog.
Also this post was originally posted on her blog, but we decided this would be a great post to have here on mine as well due to this is a major issue of mine too.
Here are her links, and I hope you all enjoy this vulnerable/informative read!
6 Months Post Surgery (June 2012), when many of the issues began surfacing.
After my last post (which was the beginning of #MyBrainInjuryJourney project), I was contacted by a few people who were interested in learning about Executive Function Disorder.
This post is about this elusive disorder, which could make doing work, getting organized, and being motivated very difficult, and my experience over the past few years in learning to accommodate to it.
So what exactly IS Executive Function Disorder? It’s actually exactly what it sounds like: “Dysfunction in your Executive Function.”
To understand a Dysfunctional Executive Functioning, you would first need to understand what goes into Functional Executive Functioning.
Executive Function is dictated primarily in the Frontal Lobe, which performs “higher level tasks” like organizing, thinking, feeling, and executing actions.
6 Steps of Executive Function 1:
- Analyze a task
- Plan how to address the task
- Organize the steps needed to carry out the task
- Develop timelines for completing the task
- Adjust or shift the steps, if needed, to complete the task
- Complete the task in a timely way
Similarly, according to WebMD, Executive Function helps you to manage time, pay attention, switch focus, plan and organize, remember details, avoid saying or doing the wrong thing, and do things based on your experience (basically learning from prior experiences and changing/maintaining actions taken next time).
I had difficulties with all of the above. You can imagine what may happen once you take away these qualities from a person.
I had many ideas on what I should do or what I need to do (ie: Get out of bed and brush my teeth). The Intention was there (“I should brush my teeth, or I’ll get cavities”).
The Motivation and the Executive Function Skills to execute the Intention were not (I’ll end up falling asleep instead of getting myself out of bed to brush my teeth; This has cost me a few teeth rots and a couple hundred dollars in the past few years).
DOING the task was not the problem. I had no issues with brushing my teeth; once my fine motor skills improved enough to brush my teeth, I was able to perform the task.
I was just not able to plan my steps and finally Initiate the process of brushing my teeth, which began with “switching” from whatever “task” I was performing (whether it be laying in bed, or reading a book), getting up, walking to the bathroom, and actually brushing my teeth. If I had to go to the bathroom, for example, because I really had to go, then I will begrudgingly get out of bed to go, since it causes severe physical discomfort.
At that point, I will probably also brush my teeth, as I am already “in the motion,” so the actual Initiation was completed (by primal need of needing to tinkle).
Momentum is the important key word in my struggle with Executive Dysfunction. Once I am in motion, I stay in motion. Once I begin, I can complete the task. If the task has not been started, unless I can “switch focus” and start the task, I will probably never get to it.
… With no way to get off the ride.
The problem is (aside from the fact that the whole situation is a problem), that to anyone watching (or telling us to do something), and worst of all, even to ourselves, this seems like just pure laziness.
(Even now, you are probably thinking, “You’re just making excuses to be lazy!” But really- who wants to have cavities?? They cost money, time, and OUCH!)
This situation proved to be disastrous as a college student. As I mentioned in my previous post, I had difficulties with reading textbooks, doing projects, writing research papers (hell, even researching), planning out my work along deadlines, and organizing myself.
All projects were disproportionately gigantic in my imagination, and I shrank away from anything that would tax my frail organization and planning skills.
More likely than not, the task was left undone, because I could not figure out how to begin, got overwhelmed with the enormity of the task, or could not “break” my current activity and “switch” my focus. (Also, I would simply just forget. My short-term memory was fairly badly affected.)
College & Executive Dysfunction
Trial and error got me an arsenal of strategies and tools to help me get through my work without overwhelming myself. Once I hit a threshold that told my body that “It’s too much, too complicated, I can’t do it,” my brain sent the signals for an all out anxiety attack to make sure I couldn’t do it.
While I did not use majority of the components that were awarded to me (extended time on exams, exams on the computer, exams taken on different days, scribe), I did utilize extended due dates, and met regularly with my professors if I had issues, so that I could get help with breaking down my assignments and get affirmation that I was going in the right direction.
I also had a computer accommodation, which meant that if the professor prohibited computers, I could still bring one in to take notes (since my fine motor skills were not so fine, and I had difficulties writing).
June 2012: Diagnosed with Executive Function Disorder, Anxiety Disorder, Stress Gait Disorder, & Non-Epileptic Seizure Disorder.
Three years ago, when I was contemplating getting accommodations, I wrote the following blog post:
I still have to make an appointment for my neurologist to write a letter for filing for accommodations at my university (I guess he doesn’t want to do unpaid work anymore, so he wants to write the letter during appointment time?).
I’ve been asking for extended time for assignments because of the Executive Function Disorder, and my inability to focus or complete work, but I’m also thinking about asking for laptop-accommodation for taking notes if I’m in any classes that requires me not to take notes (I know it exists, but I’m not sure how to get it… I guess just asking for it should suffice, giving my reasons).
Since my surgery, it’s been a lot more difficult for me to write (especially quickly) with my hand, and it would save me so much pain and irritation if I could just type the notes up instead of having to deal with handwriting it.
It’s especially irritating because I used to have such “perfect” handwriting, but now, if I’m a little rushed, it’s a hot mess. If I’m fighting for time to scribble things down, I don’t know if I would even be able to figure out what I wrote later on.
I don’t think I’ll ask for it for exams, though. Even though I’m super slow at writing, hopefully it won’t be too problematic with 2 or 3 hour classes (last semester was problematic because the classes were 90 minutes).
It’s ridiculous because I used to finish 7 or 9 page written exams in less than half an hour, but last semester, I struggled to finish, and one of them, I had to skip a whole problem (still somehow got a 90% though) because I couldn’t write quickly enough, and the proctor was a substitute, so I couldn’t explain my circumstance.
But I don’t want my classmates getting upset that I, looking perfectly healthy, get to “cheat” on exams (I mean, who with the right mind won’t take that opportunity?
Must be crazy to not want to cheat when you have a laptop during exams!) I would assume it’ll get really difficult, too, with having to obtain something that can’t hold notes or will absolutely not connect to the internet, etc., in order to take exams.
Majority of my professors were very accommodating and kind about my struggles (I suppose it didn’t hurt that I had a huge scar across my head), and I did not have to use my accommodations very often. But when I did, the assignments were not modified in any way; just the due dates.
So I still got A’s on my projects, but I had more time to organize myself and submit the quality of work I would have otherwise, but with a few days or an extra weekend to push it out, to account for my difficulties with getting started or my slow reading comprehension/writing speed.
I used my accommodations rarely, but got them renewed for most of my remaining college years (2 undergraduate and 1 graduate), though by the end, I mostly forgot that I had it at my disposal.
I was also put on Modafinil/Provigil for my Idiosyncratic Hypersomnolence (Sleep Disorder), which also helped with my Executive Function Disorder, as is recorded in my August, 2012 blog entry, titled “After a week of being on Modafinil (Provigil)“:
I have come to the conclusion that when I start talking, I can’t stop, and I get really excited.
Oh wait. Maybe that’s normal.
But I’m a lot more talkative than usual when I’m in the mood.
I think it does give me more energy/makes me more alert/wakes me up, but it’s not like a DANG!!! I’M SO POWERFUL! SUPERSAIYAN! kind of way.
It is much tamer.
I can focus on my work more, and have been able to complete an assignment, and on my way to finishing another (I taught a lesson yesterday, too). I can make a lot more “decisions,” I feel like, and can cross things off from my to-do list.
I still get very overwhelmed very easily when I have a perception of having too many things I need to do at once, so I still need to use Listography to list out things I need to do so I can cross them out and I can visually see that I’m getting things done.
Listing is also very important because I have a tendency to forget practically everything, so I am left with a lingering sense of “I KNOW I NEED TO DO SOMETHING…” if I don’t put it down somewhere.
This has been the case for the past year or two, but it has been getting progressively worse in the past half year, so Listography and other places where I can jot things down is a life saver (like my MemoPad app on Android… still waiting for Listography to get an Android app!).
After this project is finished and burned into a CD, I can go turn this and another assignment in at the university, and I will be taking a step forward towards my degree, going back to square 1 to restart my 4th year, and make up some classes that I had to drop because stress was giving me too many seizures, and my neurosurgery was coming up last fall.
Many Faces of Executive Dysfunction
Difficulty with Executive Functioning may manifest in many different ways.
When Executive Functioning is disrupted, the person “may have problems with analyzing, planning, organizing, scheduling, and completing tasks at all — or on deadline” 3.
People with EFD may 4:
- Have difficulty planning a project
- Have trouble comprehending how much time a project will take to complete
- Struggles to tell a story (verbally or in writing); has trouble communicating details in an organized, sequential manner
- Have difficulty with the mental strategies involved in memorization and retrieving information from memory
- Have trouble initiating activities or tasks, or generating ideas independently
- Have difficulty retaining information while doing something with it; e.g., remembering a phone number while dialing
Have you noticed any of these symptoms in yourself or your loved one?
These seem like “minor” things, and something that could point to someone just not paying attention, or not thinking things through enough, but it could also be a genuine issue with the workings of his brain.
“Just focus!” “You aren’t paying attention!” “Why didn’t you plan this out better?” “You’ve said that already…”
“You’ve told me that story five times already.” “What were you trying to do just now?” “I JUST reminded you about the dishes!”
There are Two Types of Executive Function 5:
- Organization: Gathering information and structuring it for evaluation
- Regulation: Taking stock of your surroundings and changing behavior in response to it
It’s difficult to organize my thoughts, create a plan, or stick with the plan of action. And it is also difficult to reference previous experiences or prior knowledge (
It’s not Gone – Just Accommodated
While I have developed many systems and accommodations for myself over the years (very rapidly in the first few months after my diagnosis and realization that if I did not change something, I was never going to be able to “do” anything in my life), I still struggle from day to day with my Executive Dysfunction.
Even while I work full time in the field of Information Technology (IT), and part time as a tutor, I struggle to get out of bed in the morning.
I have many planners and journals that I keep with me, as well as Google Calendar, to make sure that my appointments, schedule, and To-Do lists are always at my fingertips.
Many people pride themselves on their memory. I know how fallible mine is, and so I make sure that my “second,” “third,” and “fourth” brains are all with me at all times. This allows me to relax, calm my anxiety, and focus on other tasks, daily routines, and work.
I know that even if I don’t remember, what I need to remember is safely written down or typed up somewhere for me to refer to later.
I know that if I go home after work, instead of heading straight to the gym, I will never make it out again to go to the gym. So the night before my “Gym Day” (I have to decide on one and stick to it!), I remind myself that it is gym day tomorrow, and pack my gym clothes, locker key, and water bottle.
I often forget my water bottle, which causes a lot of internal strife, as my “Logical” Mind tries to convince myself that it’s okay; I can take a drink from the water fountain, while my EFD Mind freaks out that I can’t possibly go to the gym because I don’t have everything I need, and that at the very least, I need to go home and get it. (We all know what will happen if I do go home, so I have to kick down my EFD mind and just go without my water bottle.)
Such a seemingly menial and inconsequential detail could potentially set me off and curve me away from my goal of going to the gym once a week.
Thus is my situation today (I forgot my water bottle; I should just really leave it at work so I don’t forget).
Momentum is key. As long as I can get myself to be “in the process” of going to the gym (by going home from work, where the gym is), I can get myself to the gym, have a workout, and get home.
If I have to go home to grab my gym clothes, or drop things off, it is highly unlikely that I will be able to “shift” from “I am home” to “I am going to the gym” mode again, and thus, I end up making myself something to eat and vegetating on the couch for the rest of the night.
#MyBrainInjuryJourney is a series of posts recounting my experiences in the months and years following my Craniotomy to remove my Arteriovenous Malformation, and the resulting Brain Injury.
#MyBrainInjuryJourney is just one person’s experience, but I hope that maybe it will help shed light on some experiences some of you or your loved ones may be having.
You can follow the series by going to the #MyBrainInjuryJourney Page.