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Friday, May 14, 2010

My bvFTD Symptoms - Memory Loss

My bvFTD Symptoms - Memory Loss

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.

Though I have a whole range of symptoms, I am going to start with memory loss. It was the first thing I noticed, and the easiest symptom of mine to write about. It is also the one most people seem to associate with dementia. I know I did. I am going to try to describe how my memory loss is now. It will inevitably get progressively worse over time. At this time, being newly diagnosed with bvFTD,  it is one of my more manageable symptoms.

If you have done any research at all on the web it will probably be apparent that the main difference in Alzheimer's Dementia, and bvFTD is that the primary symptom of Alzheimer's is memory loss, and the prime symptoms of FTD are behavioral. Some of the best web sites I have seen make it sound like memory loss is not at all a part of FTD. That is what initially caused me to question my diagnosis of bvFTD.

For me, the symptom which I noticed first was memory loss. Note that I had a bunch of other symptoms, but as is the case with most people with FTD I was totally unaware of them. All I noticed at first was that I had some problems with memory.

It turns out that memory problems are not uncommon in people with bvFTD, but they are very different from the memory problems associated with Alzheimer's. I think that as the damage to the brain advances, it is more difficult to differentiate between the two, so this is probably more descriptive of the earlier stages of the disease.

It is my understanding that with Alzheimer's you forget the most recent stuff first, and then older stuff. Once something is forgotten, it is gone for good, or soon will be. This loss of memory occurs deep in the memory centers of the brain where long term memories are stored and processed. This progression is well documented on the web.

What I finally found was a short description of memory loss symptoms specific to FTD in the book: What If It's Not Alzheimer's?

According to the book, FTD memory loss is a symptom of Dysexecutive Syndrome. Dysexecutive Syndrome covers a whole bunch of different symptoms, and is going to be the subject of a future post because I have it in spades. In any case, it is comprised of a whole set of higher brain functions controlled by the anterior parts of the Frontal Lobes of the brain, and working memory is one of those functions. Aha!

"Working memory involves the ability to manipulate a relatively small amount of information held in short term memory over a brief period of time. Working memory is involved in a large number of ongoing cognitive activities such as the comprehension of a conversation, or a movie."
That is right from the book. I copied this 2 or 3 words at a time, referring back to the book at least a couple times for every few words. I missed a whole clause. It was very difficult because the process relies on working memory to store what I read in the book long enough to type it here. 

ADHD-like symptoms are sometimes associated with bvFTD, and also effect working memory. Of course, I also have ADHD-like symptoms. My psychoneurologist, and my Neurologist, both thought it likely my memory loss problems were actually related to my profoundly impaired attention instead.

Information comes at me, I miss it because my brain is not focused on it at that millisecond, and it is not stored in my working memory, and is not stored anywhere else either. I simply saw or heard it, and it didn't register with me at all cuz in that instant my brain was visiting Jupiter. My brain spends a lot of time on Jupiter.

So, I really have two things going on. I have an attention problem, and a working memory problem. The attention problem makes it seem like I forgot something when I never really remembered it, and the working memory problem effects very short term storage while thinking complex thoughts, or multitasking.

Shortly after I first noticed the memory problems, I was describing them on the phone to my ex-wife. She works in long term care, and has seen many people in all stages of Alzheimer's. She said immediately that I should see a doctor, and that what I described did not sound to her like Alzheimer's. She made a simple analogy. Everyone forgets where they put the car keys now and then. A person with Alzheimer's forgets what car keys are for. Neither case fits my symptoms. I know what car keys are for, and I most always know where they are. But, when I am getting ready to go somewhere I may look for the keys I just had in my hand a few seconds ago, and not remember setting them down, or where I set them. I immediately start searching, and usually find them a few seconds later. I know I put them there, but I have no memory of doing it, even though it was only 30 seconds ago. An imperfect analogy at best, but it gets the idea across. If you were observing me, you would see me set the keys down, search for them, and pick them up again. I might look a little disorganized, but you probably could not tell that I had no idea why the keys were not still in my hand to begin with.

For me almost all of the problems I first noticed with memory loss occurred at work. I could not remember job numbers. I did not remember what databases I had completed last quarter. New product codes became a mystery to me. I did not remember half of the steps I performed to produce the databases I was currently working on. I could not remember half of what went on at meetings, or what was said in a phone call. Copying updates from paper and typing them into the computer was downright painful.

I covered for this loss of memory at work by creating work-arounds. I was smart, and very good at my job, which helped. Creating work-arounds was not something I consciously did. I see them now in retrospect, but I was totally unaware of doing it at the time. It seemed completely normal. If I didn't remember something, I just looked it up again... and again. I started making notes to myself. I had lists of job numbers posted on my wall. I had post-it notes stuck everywhere. I would work at home to minimize distractions. I got by this way for a long time. Eventually I just couldn't keep up. I had no idea why. I did not even realize I had changed the way I did things.

The big scary memory issue that prompted me to make an appointment to see a Neurologist was forgetting a couple of important meetings. I had a personal meeting with my boss for my mid-year review last summer. I had a telephone meeting with my boss to plan out and redefine my objectives last fall.

I remember having the personal meeting. I remember what the meeting was for. I remember exactly what my boss was wearing, and how she was sitting. I remember where we were, and even where we sat at the table.  I remember the time, and that the meeting lasted over an hour. I can describe the whole boardroom in detail. I do not remember a single thing she said, or anything we talked about. Nothing! This was brought to my attention in the telephone meeting last fall, but I covered for my total lack of recall as best I could. I was just a tad behind on my objectives because I did not remember what they were, and didn't even realize at the time that I didn't remember until it was pointed out to me by someone else. I was clueless as to what was going on, and chalked it up to stress, or some odd complication of Diabetes.

So, of course, I didn't remember anything about the telephone meeting either until right before my year-end review when I was reminded of it, and I realized I was still just a tad behind on meeting my objectives.

That is when I went to see the Neurologist. By that time I had also noticed some other symptoms.

I have noticed several other effects of my impaired working memory since then of which I was totally unaware... of. You are actually seeing one right now. I have just repeated the content of the last paragraph, but I think I said it better the second time.

I cannot do even simple mental arithmetic. When I try, I can't store the number from the first part long enough to complete the next step, and then come back to it. That probably makes no sense, but when I add the ones column, I forget the answer to that step by the time I add the tens column, so I can't put it together to get an answer. I was totally unaware of this. I have no idea how this could have crept up on me without me noticing.

The severity of this inability to do mental math due to impaired working memory surfaced after I met with my HR department, and had already undergone some preliminary testing. I was driving home, and struggled for almost a half hour to answer the question: How many months are there in 180 days? I finally came up with the answer. I was so happy, I mentioned it in a phone call with someone later that evening. There was a long silence when she said, "Six!" Up till that moment I was so sure it was 9. Not only did I work out in my head that 18/3 was 9 - I had actually checked it by 3 x 9 = 18. I was never great at arithmetic, but this was ridiculous even for me.

This effects my day-to-day activities. Imagine taking that impairment and balancing a checkbook. Estimating an arrival time. Gas mileage. Making a schedule. Shopping. Converting a recipe. The list goes on. I use a calculator whenever I can.

It is extra confusing because I can still understand calculus, advanced predictive statistics, and other math theory. Imagine. I could be in a conversation about statistics, and can't add 12 + 16. I was actually in a conversation similar to that a couple weeks ago discussing the probabilities of repetitive sampling from a population.

It seems really weird to me that I can write a sentence, or a paragraph, or a whole post (though it takes a long time), but I can't add 12 + 16 in my head. You probably guessed it. Language and working memory are located in different parts of the brain. Mathematics and working memory are also in different parts of the brain.

Another thing I sometimes notice is that when I am doing things that take several steps, and get interrupted, I have to go back and retrace my steps to know for sure if I completed the last step. This is not that different than being stopped in the middle of saying the alphabet, and having to start all over again from the beginning - and sing it. The interruption may be something very minor for me, or even a random thought breaking my concentration, so it happens more often. I have to be very careful taking medication if I don't use the daily pill dispenser because there are several, and when you are swallowing the 5th pill, you had better remember if you took the first one. Everybody asks me about cooking, but I do not seem to have a problem with that yet.

So, the way I interpret my memory loss is that it is not really memory loss at all. It just seems like it. When I was confronted with evidence of something that happened, and I did not remember it, I naturally thought I had forgotten it. What really happened is that I never remembered it in the first place. The result is the same. Subjectively it looks the same to me either way, but the mechanism is different. I do believe that forgetting something you knew is more Alzheimer's-like, and not ever remembering it to begin with is more bvFTD-like. That may, or may not, actually be the case.

There are a couple things that I thought were memory related symptoms, but are probably not. I use my DVR to repeat stuff I am watching on TV cuz I get lost in the plot. I also have a difficult time getting through a novel. I have been reading 3 books off and on over the past year. It isn't a memory issue as I first thought, but more of an attention problem that makes me re-read or repeat the same stuff over again so often it becomes frustrating. My mind just wanders off. I think everyone finds themselves reading a paragraph, and having to reread it because you were thinking of something else and missed the content. Well, I may do that 5 or 6 times for every page, especially if there are distractions. When I read, or watch TV, I am totally absorbed in concentration, or I miss it.

I got lost a couple times in the past year going to a familiar place. This is a classic memory problem associated with Alzheimer's. In my case I eventually remembered how to get where I was going. I knew, I just didn't know the next step in the trip right then. The memory was in there - intact. I think it was not an issue with memory, but rather with another Executive Function: Sequencing.

For me, I prefer it when people correct me, or remind me. At least that is how I feel about it now. If I am talking, and forget we talked about the same thing yesterday, just remind me. If I start telling you something that I have already told you, just remind me. Sometimes I may remember, sometimes not. When I do remember it might actually help me to remember other things associated with the event. Maybe not. In any case as long as it is more helpful than annoying I would rather be reminded. Besides, it is better than you hearing that stupid story a second time.

Though this is very simplified, it is how I remember and interpret it.

Comments, suggestions, corrections and questions are encouraged.


  1. I'll remind you that you used to raz me about my own ADHD. It has its advantages (at least ones I have made use of over the years) but also its disadvantages (that can sometimes be somewhat embarrassing). After living with it myself for so many decades, I can empathize with your current incarnation. You still need a puppy. Ian was right.

  2. Thanks, crazyegor,
    I don't remember ever razzing you ; )

    I think I am going to have to get one of those little notebooks like you carry around all the time. I think the hardest part for me will be to remember to actually use it.

    Right now I rely on a to-do list, and a big calendar I can write in.

  3. now you have no one to blame when you leave the remote control in the fridge... Just like kane used to do

  4. I know we joked that we both were seeing a "psycho neurologist" but maybe for the blog you ought to use neuropsychologist for those who might not get the joke ;-)
    You're doing a good job of telling how things are happening for you; makes understanding the web medical stuff easier, too. I still like the puppy idea, but what if you leave him in the fridge with the remote?????

  5. Thank you.

    No! I do not under any circumstances need a puppy at this time.

    Both Matilda and Ian bring up an interesting point. One of the signs of dementia is putting things in odd places. The remote in the fridge would qualify, or shoes in the oven. Stuff like that.

    When a child takes the remote with him into the kitchen so his older brother cannot change the channel while he is away, then needs to use both hands to pick up the milk bottle, naturally he has to set the remote down somewhere. Hence the remote ends up in the fridge.

    I could see me setting the remote down under similar circumstances, and not even remember I set it down. Though with impaired working memory it might be slightly more likely for me to do something like that, it would be contextual. I would actually have had a reason to put it there, and then just not remember doing it. I do not put things in odd places for the reason that I know they do not belong there.

    I do, however, still check in the fridge when I misplace the remote. So far - so good. I found it in the couch cushions ; )

  6. Thank you for your breadth and depth of insight into younger onset dementia and bvFTD. I have been symptomatic for about 4 years, but was diagnosed (in order, over a period of 10 years):
    1. PTSD
    2. Bipolar I, and finally:
    3. Early Onset Alzheimer's
    bvFTD has not been explored by my neurologist as I have only seen him a few times, and never for very long. He does not specialize beyond general neurology and I have no means to explore this further at this time. Given all I have read, I doubt I will as I could travel across the country, spend 10's of thousands of dollars and still have no different meds or prognosis than I do now! I am on 10 mg of Aricept and will probably see that increased along with the addition of Named as my body can tolerate the awful side effects. And yes, after delivering the diagnosis and prescription, I was sent home without ceremony or advice and told to return in 3 months. I took me three weeks to finally just fall apart one afternoon.

    I hold a PhD from a major university, but first early signs started emerging in my early years as a professor. All the same signs you mention above. I can still explain ANOVA's in advanced statistics, but cannot add or subtract without difficulty. I often blurt out things to people that I really do mean, but would never have said out loud 10 years ago. I do OK when one-on-one if I have some warning, but I am overwhelmed in groups or worse, in public places and become silent and edgy. I used to travel and lecture throughout the Americas and Europe, but the last trip I took was terrifying for me as I was always lost, disoriented and afraid. Now I adjunct a couple times and week and live on disability.

    I realize I am the first to comment on this post in 5 years or so, but I am doing so because of how helpful I found it. I wish you the very best and hope to read more.

  7. Thank you for your comment, David. I recently had to change doctors, and have been having a very difficult time finding a new one. The amount of ignorance and incompetence out there is amazing. I am glad you finally seem to be getting things sorted out. Keep at it. Some days are better than others, and better times are coming.

  8. Hi,

    It is great to read your blog. I have not worked for 3 months due to my brain atrophy and am waiting for the diagnosis. It is killing me.

    For the last 5 years I have no short term memory. I can watch the same movie 3 times in a week and I only know this when my husband tells me so.

    I hope all is okay with you.

    God Bless you and all puppies

    1. I wish you all the best! Maybe it is the medications or supplements I am taking, or maybe I have adapted somehow, but my memory actually seems a little better than 8 years ago. Of course it could just be my perception, too. Some days are better than others.