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Thursday, May 27, 2010

My bvFTD Symptoms - Disorders of Affect and Social Comportment

My bvFTD Symptoms - Disorders of Affect (emotions) and Social Comportment (doing the right thing)

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.

This is the first in a set of my symptoms which are more behavioral in nature. Up until now I have been dealing with the easy subjects like Memory and Dysexecutive Syndrome.

These behavioral symptoms are difficult for a couple of reasons. First, they are very hard for me to notice anything is wrong. From my perspective whatever I do is normal, or I wouldn't be doing it. Duh! That is the nature of bvFTD as far as I can tell. Second, it is the behavioral symptoms which cause me the most problems, and are the reasons for my disability. It makes it an emotional subject for me, and difficult to write about.

Though Disorders of Affect and Social Comportment sounds complex it is basically about emotions, and not doing bad things in public, and controlling your behavior. Disinhibited Behavior is a huge component of bvFTD. Just a reminder that the "bv" in "bvFTD" stands for "Behavioral Variant", so be sure that behavior is a critical set of symptoms. In the later stages disinhibited behavior may manifest itself as anything inappropriate from rude comments, eating with your hands, stealing shiny stuff from stores, to urinating in front of a restaurant. I hate to even read about those symptoms, and the effects they have on family and friends.

For me, I have thankfully not noticed any behaviors like that, but that does not mean they will not develop over time. Not everyone shows every symptom, and this is one that would be particularly difficult for those around me. I would be very grateful if I skipped this one altogether.

I have always talked to waiters, waitresses, and cashiers in the checkout line. I still do. I do not think this is a symptom at this time, but I also doubt I will notice if it changes. Having conversations, or making rude comments to strangers is a symptom of bvFTD I have read about in several places, including the book, What If It's Not Alzheimer's?

I can see me telling some idiot in in a restaurant to take his frakkin hat off. Since when did your Mother ever tell you it was OK to wear your frakkin hat at the dinner table? I can also see me telling somebody to shove their frakkin cell phone up their... well, you get the idea. I can hope that if I do develop these symptoms over time they will at least be related to some pet peeves of mine so I can get some gratification from them.

(Hmmmm... In rereading this it occurred to me that I am Diabetic, and low blood sugar also affects my emotions. This is something I will bring up when I next see my doctor.)

I do have some disinhibition of my emotional responses.
I have noticed for me it seems to be triggered by frustration. Under normal circumstances frustration can easily be expressed as anger, at least it always has for me. Well, I can now take that to the extreme in no time flat. Stranger or loved one, it makes no matter to me. This is not something that happens all the time, but it has happened. Even once would be too many times.

For me, in each case, the frustration built up slowly over time, and finally something sent it over the top and it resulted in angry rage out of my control. When it happens it is as if I step outside myself and become a spectator. I am swept aside by the pure white hot energy of the raging emotions. It is like a feedback loop, growing bigger and hotter as it feeds on itself. It has resulted in blistering verbal tirades.

When I feel that strong of an emotion, it stays associated with whatever or whoever was the cause. That makes sense because when someone makes you angry, or hurts you, you tend to remember it and associate the feelings with the person or event. I carry it to an extreme. So, even though the response may be out of proportion, I can still carry a coinciding grudge.

Dr. David Banner said it best,
"...don't make me angry. You wouldn't like me when I'm angry..."

Uncontrolled raging anger can have some nasty effects in real life. It has caused me to have a screaming nasty tirade and escort my lady-friend to the door of my house, and unceremoniously throw her out. Literally, physically, push her out the door. As a friend asked, "How does your relationship get over that?" It doesn't!

It has caused me to begin an email to my North American President at work with the word, "Bullshit!", and then I said what I was really thinking! Whew! That was a beaut! It was all true, but the delivery was very inappropriate. The follow-up phone call was even more extreme, and didn't go over so well. That was my boss at the time.

Most of the time my emotional state is pretty stable, maybe more stable than before, and my emotions do not run away with me in tow. Every now and then they are off to the races without warning. On rare occasions my frustration over something like filling out insurance forms has manifested itself as deep sadness. Again it was a subject that had built up over time, and something small sent it over the top. The process feels similar to what happens when I get angry only with deep sadness instead. That is more rare so far.

I may have some other manifestations of this change in emotions, but if so I am unaware of them. That does not mean they are not there, just that I cannot see them.

There is another change I noticed which may or may not be related
. This one is very contradictory because it has to do with Empathy which the lack of is a common bvFTD symptom that I plan to talk about it in a future article.

I love to watch almost all kinds of movies, especially those old romantic comedies. I have noticed I react to them at a more emotional level. In short: happy movies make me feel happy and even laugh out loud, sad movies make me feel sad and even get teary, action movies make me feel the excitement, and horror movies bother me. I seem to over-empathize with the movie. Sometimes that makes them all the more enjoyable.

Those movies made for the Syfy Channel and shown on Saturday nights just suck! I'm just sayin...

Now, I have been a horror, and even slasher, movie fan since forever. I have even written books about them, as well as a magazine review column. Now I find myself avoiding the genre. No feelings of fear, that is silly, but rather an unpleasant feeling of agitation. I guess I may eventually have to say goodbye to Freddie, and Jason, and even little Chucky.

In any case, sometimes my emotional response does not fit the situation. That is an understatement when I have raging anger, or deep sadness over seemingly little things. Though it is episodic, it has had devastating effects on my life from work to personal relationships. It just isn't something that an apology can fix.

That is what I have noticed, or rather has been pointed out to me, about my disinhibited emotions. Socially, I think my manners and behavior are passable so far. I have always pushed the limits of what is acceptable at times, so who would notice until it is extreme?

Your thoughts, suggestions, corrections, and comments are always welcome.


  1. ugh that sounds like such a conundrum.... I mean you say what's on your mind which people generally want to do anyway but refrain because they feel bad for being rude. At least you won't feel bad afterwords. The down side is when you are actually out of line. Not having that filter to know how far to go will be something to watch for. Like you said, you take everything to the extreme...

  2. You've always seemed to say what was on your mind to me; never taking advantage or going ballistic, but I definitely got the message. And that has caused me to walk on eggshells a lot. Maybe it's my insecurities, maybe it's your bvFTD. Hard to differentiate the two for me sometimes. I will tell you if you've crossed the line...promise.

  3. Thanks for the comments Matilda and Ian.

    There is always a balance between saying what is on your mind, and being tactful. I have not always been so tactful, and will probably get less so. I can't believe I wrote this without referring to filters. We all use them to control what we say and do. My filters are more dynamic, and sometimes not there at all. They are on a sliding scale and let more through because I am sometimes not capable of seeing or caring about the effect.

    Oh, and several people have used the phrase, "walking on eggshells" around me at times. I can't see why ; )

    According to the book, What If It's Not Alzheimer's? giving feedback is useless as I simply cannot see what I am doing as inappropriate.

  4. I passed one-half of my workday reading everything you have written here to date, and despite the humor and reason with which you reflect on your diagnosis, I now believe bvFTD to be among the most horrifying and tragic conditions:
    "Glen Beck is starting to make sense!"

  5. Thanks for the comment, Kristin.

    Even on the tough days, I try to keep some sense of humor. It helps to laugh sometimes.

  6. Are you sure you do not have the Phenocopy syndrome,,,
    Is your MRI normal or do you have pathology? If your scan is normal, get looked at again for bvFTD Phenocopy syndrome

  7. Thanks for the comment Shaza.

    This might be a good topic for a future post because there is a lot information, and it is very current research.

    My MRI shows severe atrophy, but I can still hope. Of course I cannot be sure until I die and they chop my brain into little pieces to see what flavor of Tau aggregates they can see.

    Until then, and for those not familiar with the bvFTD Phenocopy Subgroup here is some recent research on distinguishing bvFTD Phenocopy subgroup. An interesting side-note: The Phenocopy Subgroup was identified in a study on survival in FTD... they messed up the data because they live almost twice as long as clinical bvFTD patients. Below is one of the 2 most widely cited studies.

    Nonprogressive behavioural frontotemporal dementia: recent developments and clinical implications of the 'bvFTD phenocopy syndrome'.

    Kipps CM, Hodges JR, Hornberger M.

    Wessex Neurological Centre, Southampton University NHS Trust, Southampton, UK. christopher.kipps@soton.ac.uk

    PURPOSE OF REVIEW: The clinical features of behavioural variant frontotemporal dementia (bvFTD) are well established; however, recent work has identified patients fulfilling diagnostic criteria for the disease who do not appear to progress clinically. This review describes means of distinguishing this group at an early stage from patients who are likely to deteriorate.

    RECENT FINDINGS: Despite indistinguishable clinical profiles, studies in a cohort of bvFTD patients showed a particularly good prognosis in a subgroup of predominantly male patients in whom initial structural imaging was normal. This could not be explained by differences in disease duration, and was confirmed by subsequent PET studies. Retrospective review of clinical data in these groups verified that the current clinical diagnostic criteria are both insensitive to true progressive bvFTD, particularly in the early stages, and also poorly specific. In contrast, measures of activity of daily living performance, executive function and tests of social cognition appear to have better discriminatory value for patients who show clear clinical progression, with many individual diagnoses verified by post mortem examination in this group.

    SUMMARY: It remains doubtful that the nonprogressive group have a neurodegenerative disease. The implication for the current clinical diagnostic criteria and their proposed revision is discussed.

    Unfortunately I showed impairment on 3 of the 4 discriminatory tests mentioned. With that, and my abnormal MRI, it is unlikely I have Phenocopy Syndrome.

    If it quacks like a duck...


  8. I have been hunting for the similar posting like this. My day seems to be completed now. Now I can think of just one thing and that is giving my comment as a way of showing gratitude.And yes i have tweeted your site bvftd.blogspot.com .

  9. It is amazing to me that you are so aware of your illness. My husband was a brilliant physician and has had FTD for 8+ years and is not aware AT ALL that anything is wrong. Yes he has urinated in public, picked up ciagarettes out of dirty public ashtrays, Taken his bathing suit off in public, eaten from other people's plates and cursed to nice old ladies.

  10. Thanks for your comment.

    Every case of FTD is different. I notice that for those unaware of their symptoms there is more chance of overtly inappropriate social behavior. Maybe with the awareness comes some restraint ...maybe. My guess is that it is related to the specific parts of the brain being damaged ...but what do I know. I have not seen anything written on awareness and behavior as an aspect of FTD other than general references to a lack of awareness being common.