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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.

Friday, June 18, 2010

My bvFTD Symptoms - Loss Of Empathy

My bvFTD Symptoms - Loss Of Empathy

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 a symptom I have read about in What If It's Not Alzheimer's, and I think I have it to some degree. This is one of those symptoms which is very difficult for me to see in myself. I think I have seen some indications of it, but they are clouded by my other emotional symptoms. Mainly an overall blunting of emotions in general.

The other day a friend was sitting at my dining room table crying her eyes out over something or other. I felt nothing.

I had no feelings of sympathy, or of empathy for her at all. This was so dramatic of a change for me that I even noticed it at the time.

Intellectually I knew I should be feeling something, but I did not. It reminded me of the song, Nothing, from the play Chorus Line.

And I dug right down to the bottom of my soul
To see what I had inside.
Yes, I dug right down to the bottom of my soul
And I tried, I tried...

...But I felt nothing
Except the feeling
That this bullshit was absurd!

That just about sums it up... but "Hey!"... I can't add anymore either!

I have noticed on a few other occasions where intellectually I knew I should be feeling something, but it just wasn't there. This is probably a contributing factor as to why my ex-girlfriends are ex's. Sometimes I know I hurt someone's feelings, but it is only an intellectual awareness for me. No emotions are involved.

I do still have some empathy, so it isn't like I never feel anything, but it sometimes just goes away. I still have normal feelings when it involves a family member or loved one... at least I think I do.

I can still recognize intellectually when I should have feelings and do not.


That is why this is another difficult symptom. If the part of my brain which recognizes and interprets emotions in others is broken, I cannot really be sure I can tell when it is happening. Catch 22!

In my Lime Jell-O mind this is related to another symptom: Apathy. I think the two are related because for me "I feel nothing", and "I don't care" are about the same.

All of these emotional and behavioral symptoms are related, and work together to undermine my relationships. There is a lot more to apathy than that, so I will talk about it in another post.

Loss of empathy is probably more easily seen by others than by me. I am guessing I sometimes seem cold, and unfeeling, and unsympathetic. I am very self-centered.  I am more that way than I was before.

I do not like it, and hopefully it will not get any worse than it is now.

Comments are welcome.

Friday, June 11, 2010

Ritalin Revisited - Part 3

The continuing story of Ritalin - Part 3. Se also Part 1, and Part 2.

I have been taking Ritalin for a couple months. Actually I am taking the generic form which is methylphenidate, but why pick nits? I started out with a dosage of 10MG in the morning, and another 10MG in the evening. There are no drugs approved for treating FTD, but there are some to address some of the symptoms. Since I have profound attention issues, Ritalin is a logical choice since it is used to treat ADHD.

I spoke with my neurologist, and said that I thought I might be seeing a slight improvement taking Ritalin, and he suggested I try increasing the dosage to 20 MG. We discussed several options, and I decided I needed to experiment a little and see if it was really doing any good, or if it was just my imagination.

I increased the dosage to 20MG as the doctor suggested, but I only took it in the morning. I figured I really didn't need it when I was asleep. I did not notice any side effects. I didn't notice much of a difference at all. I tried it for several weeks.

The next step was to stop taking it, and see if I noticed any difference. So, on June 1st I stopped taking it.

I did not notice any difference at all! Nothing! I did not have any more issues with symptoms than I did when I was taking it, so I figured it wasn't doing anything to help increase my attention, or to help with my cognitive problems. What a waste! I couldn't add numbers with it or without it.

On June 8th I had another appointment to visit my neurologist, and get a refill on my prescription for Ritalin. I decided I was just going to tell the doctor that it was not helping, and not bother to refill it.

For some reason, the night before my appointment, I was looking at my to-do list. Almost nothing was checked off. Looking back, I was using the same list for several days because I was not getting anything done. I took stock. I noticed there were dishes piled high in the sink. I had not vacuumed in a week. Plants had not been watered. And... I had not written anything for this blog. Only a single post since May 27 which had actually been written before that. I had intended to write about empathy and apathy, the difficult ones. I had not even started on them.

The only difference was not taking  the Ritalin. Hmmmmm...

Here is what I think is happening. The Ritalin may be helping with the ADHD-like symptoms, and that may be why I get more done when I am taking it, but I don't think that is it. From what I have read in the book What If It's Not Alzheimer's? the part of the brain that makes you initiate an action is located in the frontal lobes, and is often affected by FTD.

For example, you are watching TV, and realize you need to visit the bathroom. You wait for a break in the show, and get up and go. It is the part of the brain that activated the process of getting up and actually doing something about what you were thinking about that is initiating the action. That is the part of the brain I am talking about, and I think the Ritalin may be helping. Maybe not the best example, but it is what I thought of first.

With my bvFTD it is easy to just sit and think about doing something, and never actually getting around to doing it. The action is not initiated. The to-do list goes unchecked. I just think about writing something for this blog, but don't actually get it started. I have a severe case of procrastination! According to what I have read, in the advanced stages of FTD this can get very severe, and no actions are initiated at all. Not a pleasant thought, but a reality. I guess it is a fatal case of procrastination.

Of course I told the whole Ritalin story to my neurologist, and he did not seem to think it was at all unusual, and didn't think it was just my imagination. He suggested I start taking it again at the 20MG dose in the morning since that seemed to be working. I agreed, but what do I know?

Well, I know this:  I started taking it again on June 9th. I am writing again. Dishes are done. I vacuumed a little. It even rained on the flowers. I am getting some things checked off my to-do list.

I think I am going to keep initiating the action of taking the Ritalin in the morning for a while longer.

Comments are welcome.

Wednesday, June 9, 2010

Communication - Please leave a message...

I generally do not like to talk on the phone. I have had a dislike for the telephone for many years. Now, with bvFTD, I like it even less. This seems to be the most difficult thing for some people to understand about me. One of the the worst things for me is when I get messages which says something like, "Call me! Call me back! I want to talk to you! How dare you not answer the frakkin phone when I call!?" That is pushing WAY too hard. Don't add to my stress. I have plenty! I really resent messages like that.

It isn't the phone itself. I like my way-smart touch screen phone. It was a present. I use it to read email. I use it for text messaging a lot. I use it to check the weather, and track storms on radar. I get pollen counts. I set reminders and use the alarm. It tells me the time, and the date. It even lights the darkness. That sounds dramatic, but I mean I really use it to light my way around in the dark sometimes. I use the camera all the time. I send picture mail. Voice-mail is great!

My phone is fine. Sometimes I even use it to make a frakkin phone call. It is the people who make it ring that are the problem!

Sometimes I just do not want to talk on the phone
. Sometimes I am busy doing the daily grind stuff. If I answer a call when I am fixing something to eat, and talk for a half hour, do you really think I am going to continue fixing something to eat? I don't think so! Did you read the part about the ADHD-like symptoms? Howzabout the task-switching? Phone calls are evil!

I know it is hard for my friends to understand when I do not answer my phone. Some friends understand better than others. It is not personal. I know sometimes I hurt their feelings. Sorry for that. It does not mean I do not want to talk to them. It just means I don't want to talk on the phone right then. Please just leave a nice voice-mail to say "Hello!", and call again. Sometimes I call back, sometimes not. I know it is a lot to ask, but it is a symptom. I cannot help it. I try as best I can. Some days are better than others. All I can do is thank everyone for their patience. Don't give up. Keep calling, and leaving a voice-mail. I appreciate every one... except maybe the ones demanding I call back.

Sometimes I just can't wait for the phone to ring and talk to someone. What do I know?

Comments are welcome.

Sometimes too much is... TOO MUCH!

I was speaking to a couple friends recently about the comment I made: "I don't want to go anywhere, I don't want to do anything, and I don't want to talk to anybody..." They said that I sounded like I was depressed.

I have read where many people with bvFTD are diagnosed with depression because of these symptoms. It is typical of someone with depression to lose energy, lose interest in people, and lose interest in activities they enjoyed. It gets even more confusing because people with depression also may have memory, concentration, and decision-making issues.

That sounds just like me at first. I have these symptoms - or maybe it is more accurate to say that I have the symptoms of these symptoms because the underlying reason for them is different. They are all controlled by the frontal lobes of the brain. They are also symptoms of bvFTD.

I am not depressed. That is the big difference. I do not feel sadness. I do not have the blues. I do not feel worthless. I rarely feel down or empty.

I dont want to go anywhere, I don't want to do anything, and I don't want to talk to anybody, and I am happy with that most of the time. It is more comfortable. There is less stress. It is easier. It is the path of least resistance. It makes me feel good.

The discussion naturally got around to whether it was better to succumb to these symptoms and go with the flow, or to fight back and challenge them. Is it better for friends and family to accept my withdrawal from social situations, or to encourage (force!) me to participate?

First off, you are asking the person who can't decide what to have for lunch to decide what to do. Bad plan! Lets ask the person who doesn't want to do anything what we should do. Duh! So...

The answer is... I don't know! I certainly don't want to just disappear, even though that would be very comfortable. I also don't want people going out of their way to make me miserable by trying to make me do stuff I really don't feel like doing. Pushing too hard is just going to really piss me off. Not pushing at all will make me worse. Sometimes it is Okay, and sometimes it isn't. Guess which! Sometimes it is just fine to while away the day watching the grass grow. Sometimes I need to get out and do something, or visit with friends. Sometimes too much is - too much. Once in a while I know the difference!

There needs to be a balance in there somewhere between what is comfortable, and what is helpful. I do not think I can always (ever?) tell the difference. I know it really pisses me off to get pushed too much.

My son brought up an interesting point. I have always been very independent. I have always enjoyed my alone time. I enjoy my own company, and always have. As he pointed out, this is a symptom which is difficult to determine when it is normal for me, and when it is because of the bvFTD. How can you tell when it is going too far?

Your comments are welcome.

Wednesday, June 2, 2010

FTD On Holiday

I don't want to go anywhere, I don't want to do anything, and I don't want to talk to anybody... and I don't want anybody to tell me different - but more about that later.

It was a conspiracy! My friends plotted and planned, and got me to go to a picnic over Memorial Day weekend. They totally deny any collusion, but I know better. I have dementia, I am not stupid.

I heard through the grapevine there was actually a plan to have someone drive all the way from the picnic to my house and pick me up had I tried to cancel at the last minute. How cruel!

Here is how these conspirators succeeded in their nefarious plot. Only the names and a few facts have been changed to protect the guilty. First I got a phone call from a friend to invite me over for a cook out. I was tentative. Then I got a phone call from another friend inviting me to do something for the Holiday weekend. So, silly me, I said, " Why don't you call my other friend and make some plans. I am not so good at planning stuff."

And they did, the lil bastards!.

So, on Saturday morning at 11 AM I was picked up at my door. My friend had made a broccoli dip, and a cheese cake from scratch. Cheesecake! I did not have to take anything, but I grabbed a bag of chips, and my bocce ball set on the way out the door. It was the best I could come up with.

It is good odds I would have backed out at the last minute as I have done so many times before. Since someone was picking me up, and I didn't have to do anything, I didn't have an excuse. Crap!

I was ready almost on time. I was picked up and delivered, and had a very nice day. There were 8 people there, which is way too many for me to keep track of in conversation, but by limiting my exposure I managed OK. After all, you can only talk to one person at a time anyway, right? Kinda? When things were getting to be a little too much, my friend and I went out on the front porch away from everyone else, and enjoyed a cigar and some easy conversation. That was a nice break from the crowd of eight.

Bocce ball was fun, and both lunch and dinner were very good. My friend's wife was the perfect hostess. We stuffed a lazy boy chair into a car, sat around the fire for a while, and then I was tired and it was time to leave. I was dropped off at my back door, and a few minutes later fell into bed exhausted. It was a good day. I only noticed a few times that my brain is turning to Lime Jell-O.

The point is, if it was not for the efforts of my friends I would not have gone. I do not want to do anything. I do not want to talk to anybody. I do not want to go anywhere. And I don't want anyone telling me different.

But more about that later.

It worked this time, but next time I'll be ready for those lil bastards! Gotta love 'em ; )

Comments welcome.