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Wednesday, June 30, 2010

My bvFTD Symptoms - Apathy

Apathy! Apathy! Apathy! So what if I have apathy? Who cares? Not me!

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.

I have always been a very goal-oriented person who would tackle anything, and see it through to completion. The time to start was NOW, and I went all in if I decided something was worth doing.

Moderation is for monks!

Nuke'em from orbit. It is the only way to be sure!

That used to be me. Just get'er done!

Not so much anymore.

If you look it up in the dictionary, you should find a definition similar to this:
1. absence of interest in or enthusiasm for things generally considered interesting or moving
2. absence of emotion

That is what I always thought of as apathy. I used to joke about it - I am apathetic, but I don't care.

When referring to apathy in bvFTD and other dementias it can include this definition, but it encompasses behaviors which are generally not associated with what I thought of as apathy.

The definitions below are taken from an article I found on the web, Apathy and Its Treatment by
Robert M. Roth, PhD, Laura A. Flashman, PhD, and Thomas W. McAllister, MD.

Apathy may be described as a syndrome characterized by decreased initiative or interest, poor persistence in activities, restricted engagement in social interactions, and/or emotional indifference.

However, the definition of apathy has been a matter of debate. For example, apathy has been most commonly defined as a disorder of diminished motivation, whereas more recent proposals view apathy as a lack of responsiveness to stimuli resulting in a deficiency of self-initiated action, or as a quantitative reduction of self-generated goal-directed behavior.

Apathy, in my warped assessment of myself, is my worst symptom. This is the one that I think is causing me the most difficulties in dealing with my day-to-day activities. It relates to getting things done.

Since this is yet another difficult symptom for me to assess in myself, I will try to address each of the facets of the definitions above as I see them. Like Loss Of Empathy it is probably easier for others to see this in me, but only if they are made aware that it is a symptom. I think most people would never notice anything is different.

First lets look at diminished motivation. To me there are two distinct types of motivation: internal and external. I do not think I have much of a problem with external motivation at this time in my current structured environment at home. I did not do so well with it in the work environment. I am referring to external motivators like deadlines, due dates, and generally things that have an undesirable consequence if it isn't done. Like I know if I don't get the electric bill paid on time I will be watching TV by candlelight. That is an external motivator.

I think of internal motivation as things that do not have an outside influence. Nobody except me is likely to notice if I do it or not. Weeding the garden is an example, or vacuuming the rug, or cleaning the kitchen, or doing the laundry, or for that matter cooking dinner. This also includes visiting with friends, talking on the phone, going to the park, and just doing the everyday stuff I enjoy doing.

The next couple of definitions have more of a self-initiated component to them, so deal more specifically with what I have referred to as internal motivation. I think they more accurately describe what I consider my apathy as a symptom.

"a lack of responsiveness to stimuli resulting in a deficiency of self-initiated action"

I see it this way - for example you are sitting on the couch watching TV, and decide you want a snack. After some thought you decide the snack you want is some chips. Next you build to a threshold where your desire for the chips makes you get up and haul your butt to the kitchen. You either get up immediately and get them, wait for a commercial and get them, or decide you don't need the calories and do not get them at all. Apathy results in not getting them at all because you would never reach the threshold which initiates the action of hauling your butt up off the couch. You would continue to sit on the couch watching TV, and thinking about how nice it would be to have a bowl of chips.

When I was looking up apathy on the net I found many very good research articles. One in particular was a study to differentiate apathy in dementias and depression. The result is that they are not correlated in FTD. Apathy occurs without depression most of the time in FTD, but depression and apathy are more frequently found together in Alzheimer's. In FTD apathy is highly correlated with Dysexecutive Syndrome. Since I have one, it follows I would likely have the other.

Anyway, the article had a very good quote that I really identified with. When a man in the study who had bvFTD was asked what had changed, he said something like, "Now thinking about doing something is just as good as doing it."

I can sit on the deck, and think about all of the things I need to get done. I can sit on the deck, and think about all of the same things I need to get done tomorrow too... and the day after tomorrow.

Meanwhile, the weeds in the garden keep growing.

Weeds are not apathetic! Weeds are highly motivated! I need to be more like a weed!

And lastly, there is the part about, "restricted engagement in social interactions". How can I make my friends understand when I do not call or visit that it isn't that I don't care... well... actually... it is! Just not in the way most people think of it. It takes a lot of initiative to maintain social contacts. Writing, phone calls, and visits all require initiating a lot of actions. I hope my friends understand that I am thinking about them all the time. In my mind I am calling, and writing, and visiting all the time.
For me with bvFTD, thinking about it is as good as doing it.

Frakkin weeds!

Comments are always welcome.


  1. What motivates you to write this blog? What is different about this than socialization? This appears to be a lot of work too -- researching, reading, interpreting, putting your thoughts together, making jokes, and the actual typing of the blog. Don't get me wrong, I've been waiting for this next installment, but what do you see as the difference?

  2. Well now, that is a good question, Matilda. It took me a while to initiate the action of answering it, but that is probably not apparent from outside. I just reached the threshold which initiated the action of actually doing it. I have been thinking about it for a while. Since the comment was posted in fact.

    There is really nothing different. Sometimes I think about writing something for many days before I actually get around to doing it. Some of this was written months ago, or I have been thinking about it for months.

    Overall, I guess my motivation is that I want to document where I am now. It is now or never. On the shorter term, you said it... you are waiting for the next installment. So are a few others. Eventually there may be more. The comments, and answering them is also a type of socialization, and a motivation.

    It is a good mental exercise, and I enjoy writing. Remember that I have written many books, magazine articles, and some magazine columns. Like the man said, "Writers write!"

    Some days, I do not write. Some days I do. I have good days, and some not so good. If I have not posted for a while I put it on my to-do list as a nagging reminder, but more on that in another post.

  3. I'm glad the comments motivate you. Isn't it interesting that you are motivated to check to see if there ARE comments. Maybe that's your innate need for some level of socialization. And you responded to the comment the next day, so not a lot of delay there. I also understand (or think I do) the sense of urgency in the "now or never" comment. Those of us reading your blog appreciate both your need to show us how things are and your ability to socialize, whatever the level or method.

  4. it's funny you keep bringing up weeds cause when kristin was there she said she just couldn't tell anything would be different with you, and we were out in the yard. So I walked over to the garden and explained that for years you've had a great garden and it's always been well maintained. But now there were some weeds. And that was it. Just a good way too look at it. Garden was still lookin good, just a few weeds. And that's kinda how I see it too. I think you're going to become a master procrastinator!! Also, I kno the real reason you're motivated to do this blog is so I don't make you get a dog lol

  5. This is the best description of apathy as related to frontal lobe degeneration that I have come across in my research. Thank you so much for your transparency here on your blog.