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Tuesday, May 18, 2010

My bvFTD Symptoms - Dysexecutive Syndrome

I have Dysexecutive Syndrome, and it makes it really hard for me to think.

Everything here is my account of what happened to me, or my interpretation of stuff. Every case of FTD is different. Keep in mind as you read this that the person who wrote this has dementia. That would be ME.

 I think this is a very complex symptom for me to understand because it includes so many different brain functions seated in the frontal lobes all working together. The way I understand it is that it is made of of several component parts. Pretty descriptive of what an executive does. You kinda have to describe them one at a time, but they all interact and depend on one another. If one breaks down, it effects the functioning of the entire set.

I am going to try to break it down into the individual components, and then explain how they act together to effect me. It is unlikely I will do a great job of it because this is a big topic to cover, and I do not understand it all that well. Apparently nobody else does either as there is no current agreed upon definition. I found this statement about Executive Function on a wiki about selective attention, and it sounds as good as any. "No exact definition has been agreed upon. However, typical descriptions involve maintaining behavioral goals, and using these goals as a basis for choosing what aspects of the environment to attend to and which action to select."

Another wiki defines it as a "loosely defined collection of brain processes which are responsible for planning, cognitive flexibility, abstract thinking, rule acquisition, initiating appropriate actions and inhibiting inappropriate actions, and selecting relevant sensory information"

First, working memory is an Executive Function frequently effected by FTD. It is different than long term memory, but the two interact with one another. I have separated memory problems out into a different post because memory loss is so typical of dementia in general, and such a frequently reported early symptom.

In addition to working memory, the book, What If It's Not Alzheimer's?, lists difficulties with control over selective attention, control over inhibition, task switching, and planning and organizing as contributing to Dysexecutive Syndrome. I will use that list as a guide and outline for this post.

Selective Attention is loosely defined as the cognitive process of selectively concentrating on one aspect or stimuli in the environment while ignoring other things. In short, this is the ability to not let extraneous crud going on around you be a distraction. It is the ability to concentrate on what you are doing.

My psychoneurological evaluation indicates I am profoundly impaired in sustained visual attention, which causes me to rate Marginally Impaired on the Dementia Rating Scale for overall attention. I believe this is where ADHD-like symptoms of my bvFTD originate. I have no idea why it is visually centered, but I have always been particularly visually oriented.

I do not have ADHD in the classic sense, but rather the results of my Psychoneurological Evaluation were more like someone with ADHD than someone who does not have ADHD. That is psychobabble saying I act like I have ADHD a lot of the time.

For me, it appears attention difficulties have had a big effect on learning. That is typical for anyone with ADHD. For example I was unable to learn a highly complex process at work, and had difficulty learning to operate within a new reporting platform. This is a big change as I have never had any problem learning anything before no matter how complex the subject or process. I could do my homework, watch television, and listen to music all at the same time, and do them all passably well. Now I require a quiet environment with limited noise and distractions. There are other factors that effect learning in addition to attention, so I am hesitant to place too much of the blame for my difficulties on attention alone.

Several weeks ago in a noisy restaurant I had difficulty concentrating on the menu to choose what to order. It was obvious even to me that it was the noise and distraction going on around me that was the cause. I just couldn't ignore it. When I read, write, or watch TV I am totally involved. I can concentrate just fine, as long as there is only one thing I have to concentrate on at a time. Unfortunately, in real life outside of my living room that seldom if ever happens.

Control Over Inhibition. This is not at all what I thought it was. In fact, if you have read about my Psychoneurology Evaluation , this is one of the things being tested by those stupid letters and "X"s that caused me so much frustration during my evaluation. In short, I could not inhibit the response to push the frakkin space bar when I saw an "X". This test also contributed to the evaluation of my attention.

As I understand it Control Over Inhibition is the ability to not do something that you don't want to do, or want to stop doing. I didn't want to push the X, I knew not to, but I could not prevent my hand from doing it.

According to my reading this includes repetitive actions and thoughts you are unable to stop.  This is not like a habit, but more like repeatedly washing your hands, or reading the same thing over and over, or saying the same phrase over and over. Those are more advanced manifestations than anything I have at this time. I don't think I have any repetitive actions, but I do sometimes have thoughts that get stuck in my head. I may dwell on a certain thought until I finally have to do something else to force it out of my head. I am not sure this is the same thing at all, so I am not going to dwell on it here.

The antithesis of this is the ability to initiate and sustain actions rather than inhibit them. I do not even know what I would look for to evaluate if I exhibit this or not, so I am not going to initiate a discussion of it here. I think a test of this is to count backwards from 100 by 7's. That is difficult at best. Creating word lists of animals or beginning with a certain letter would also measure this. From that I can guess it is something like staying with something until you complete it.

That naturally leads us to Task Switching. This has to do with being interrupted while performing one task, and switching to another, and then maybe back again. I read an article somewhere that said the average worker switches tasks about once every 3 minutes, and that half the time it was to do something self switched like surf the web, rather than answer the phone or something work-related. All I know about it is that it is an Executive Function. Again, I have no idea how to test it, or what I would look for to determine if I had a problem with it. I do switch tasks frequently, and I may not return to my original task in a timely fashion.

For me Planning and Organizing is the main point of all Executive Functions. The ability to organize things in a meaningful way, and to plan several steps ahead is nearly impossible for me. It takes days, or even weeks, to do what I used to do in minutes. I will address issues I had at work in a future post, but that is where planning and organizing really hit me hard.

When I was tested, it seemed to me that each individual facet of Executive Function was evaluated by itself. That really does not explain how this impairment relates to the real world because all of the parts interact and are dependent on one another. I have problems with attention, working memory, and less seriously with inhibition.

For me I see it as effecting the speed at which I can think in general. I used to be very smart and fast at everything. Now I have to slow down my thought process and concentrate on each and every step to make sure I gather all of the information, then manipulate it the way I need to, and report it in a meaningful matter. I have to concentrate every step of the way. All of the various facets of Executive Function work together to slow me down tremendously.

In my case, with an MRI that shows "Severe General Atrophy" of the brain, I am sure there are also other things going on in other parts of the brain which have an effect on overall thinking, or cognition. I think the effect on the Frontal and Temporal Lobes is greater, so that is where my current symptoms are being generated.

A really common example of Dysexecutive Syndrome for me is when I am in a conversation with more than a single person. I have to separate out what each person is saying, and has said before, to keep it in context. Then I have to keep it in working memory long enough to think about it and decide what if anything I am going to say. Then I have to actually stop thinking about it, and say it. When more than one person is talking, I just plain get lost and can't keep up with the flow of the conversation. I have noticed this is much worse when I am tired, and the number of people increases. This also contributed heavily to me not being able to work. That will be addressed in a future post.

Most of the time here at home in a controlled familiar location, I have no problems at all. I can do all of the simple stuff I need to do to take care of myself. When I go out it is different. All of a sudden it is no longer a controlled environment. There are many new and competing stimuli vying for my attention. There are other people, sometimes many of them. I have to process stuff, and make decisions based on the information I sense. I have to figure out what I am going to do, and in what order, and that is a dynamic process as I move along. Everything has to be processed, and I have to... THINK!

And that is what all of this Dysexecutive Syndrome crap boils down to. It is now more difficult for me to THINK.

Does this make sense? Comments welcome.


  1. Wow. You are providing such enlightenment about how this is affecting you and your life. I have noticed in you some of the things you are talking about, but only in a sort of "Hmmm" kind of way. Now I see how hard you are working at concentrating. What can we do as your friends to help you? For example, if we eat together, would you prefer staying home? Would you prefer only 1-2 visitors at a time? No talking during a movie? Please tell us.

  2. As soon as I posted that comment I realized it was well-intended but dumb. I made you sound like an invalid (another stupid word!) and I apologize. You know I mean well.

  3. Matilda - Thank you so much for both of the comments. It is not at all dumb, and no apology is necessary. Exploring the effects of dementia on me and others is a big part of why I started this blog.

    I am usually not aware of any changes in me unless they are somehow brought to my attention. I still see me as I always was before.

    I enjoy going out to eat, but I prefer a quieter setting. I can still function in a bustling busy loud restaurant, but you are correct - it takes more work.

    I am more comfortable at home, but I sense that I need to keep challenging myself, and keep my mind working even if it is sometimes more difficult.

    Some days are better than others. Sometimes I don't want to see or even talk to anyone. Other times I feel like partying.

    I am still exploring, and learning my new limits. I know my friends are still doing the same. I really don't know what accommodations I need yet. I want to say none, but that is probably a little optimistic.

    I think this is a great topic for a future post.

  4. I have an 8yo who was just diagnosed with Dysexecutive Syndrome and have been googling information like crazy!
    I found your read to be extremely insightful & interesting however I am starting to believe that he may have been "Mis-Diagnosed" as none of yours or any other's are what I am finding with him.
    The only thing I can honestly say is he has horrible attention & retaining school work! He plays a number of sports and is extremely social loud noises or busy environments don't effect him & he has a lot of friends he talks to anyone and holds a conversation very easily I'm
    So confused right now!!!!!

  5. Thanks for your comment My3boys,
    It is good that you are doing your own research, but don't believe everything on the web. There is much good information, and just as much bad. I would strongly suggest getting a second opinion from a qualified doctor, maybe a psychoneurologist, or other specialist. Maybe not just a Psychologist as their training varies so greatly. Just a thought as I am no expert. I can just speak about my own experiences. Hope everything works out. Some days are better than others.


  6. Hi Lee, I recently added a comment but not certain if you got that one. I wanted you to know how glad I was to find your blog and how comforting it is to know I am not alone with my husband who has is being diagnosed. This is very difficult and I really need a mentor and friend right now. We have a psychol. test next week and an appointment in PA at a specialist's clinic. So I am still learning more.