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Wednesday, September 29, 2010

My bvFTD Symptoms - My Perspective

 What does it look like to 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 recently asked a friend who had read my blog if there were any questions. They had several, along with some suggestions for future topics. The first question was, "How can you tell when you are having a sequencing problem?"

This is a good question, and got me thinking about not only sequencing, but a few of my other symptoms which I notice frequently. It is one thing to say, "I have Dysexecutive Syndrome." It is something else to explain what I notice and feel from my perspective. My deficiencies with working memory, attention, and sequencing all probably work together to make everyday tasks more challenging. Sometimes it is funny - sometimes it just makes me sad - sometimes I get frustrated and upset. Others would probably not notice anything at all. It isn't going to be easy to explain, but I will try. Some examples may help.

Yesterday I was making a bowl of corn flakes. This is simple, and the order doesn't matter much. I got the cereal out of the cupboard. Got the bowl. I put the cereal in the bowl. I opened the refrigerator to get the milk. It was not there. Gone! I glanced around, and the milk was sitting on the kitchen counter. Crap! I added the milk, put everything away, grabbed a spoon, and was done.

I knew instantly that I had already taken the milk out of the fridge and set it on the counter for my cereal, but that I had no memory whatsoever of doing it. I know I must have opened the fridge, taken out the milk, closed the fridge, and set the milk on the counter. Nothing. Gone. Never stored. A complete blank of unaccounted for time. I also knew instantly that it was a symptom of my FTD. I just went on with what I was doing. If you were watching me you probably would never have noticed anything was wrong.

Now before you say, "I might do that" -  it is not the same thing. I am sure everybody does stuff like that now and then. It happens to me all the time. Many times every day. (I just stopped writing this to go back into the kitchen to get the cup of coffee I had warmed up in the microwave, and forgot about and walked away from before the minute was up.)

This morning when I was taking my shower I forgot whether or not I had washed my hair. Was I finished, and ready to get out - or not? Sometimes I just lose my place, and have no idea what I washed and what I didn't. Missing time. A complete blank. I just start over. Can't be too clean I guess.

As I was getting dressed this morning I realized I had not combed my hair, or used deodorant before I left the bathroom. Happens to me all the time. I am used to it. Out of sequence I went back, and did it all after I already had my t shirt on.

Sometimes sequence does matter. Then it is an obvious symptom. It is much easier to use deodorant before you put on a shirt. I just went on, but I knew it was just another symptom. No lost time or memory issue, just the steps out of order. I just went on. It happens all the time.

I went to grab a handkerchief out of the clothes basket this morning because it is allergy season for me. I pulled out something white that looked like a handkerchief. Next thing - I was standing there with a white shirt in my hand. I knew I didn't need the shirt, but for a few long seconds I didn't know why I was looking in the basket for something white. Missing time. I just stood there trying to remember why I was looking in the clothes basket for something white. Then I saw a handkerchief, and I was back on track. I just went on.

I know it is my ADHD-like symptoms, my impaired working memory, and my issues with sequencing along with the rest of the impaired executive functions that are causing the problems. I know all that, but that is not how it looks to me. When I notice something right at the time I recognize it as a symptom. When I try to remember the past it looks different.

It manifests itself to me as "Missing time". I will try to explain, but it is hard to put into words. I look at my watch, and it is 2:00 PM. To me it seems like it should be about 11:30. Missing time! I think about what I did this morning, and I remember having coffee, feeding Kroozer, cleaning up the kitchen, and no idea what I did for the other 3 hours. Did I have lunch - or not? Missing time! I think back about what I did yesterday, and I can remember much of what I did. What I remember accounts for about half of the day. Where was I for the rest of it? Missing time!

This missing time looks to me like my days go by really fast. All of those short instances of missing time are cumulative. They add up. They form a big block of hours when taken all together. It is Wednesday, and to me it feels like it should be Monday afternoon. The rest of the time is missing. Not all gone, just not exactly all accessible.

Frequently what I did, or rather what I can't remember doing, is not really gone and forgotten. It is in my head. If I really concentrate I can get some of it back. Some of it I actually remember, and some of it I can logic out. A reminder like a dirty dish brings back the memory of eating lunch. Wanting a sip of coffee reminds me I have a cup warming in the microwave. Sometimes the memory isn't gone, it is just gone right now.

I might not remember if I watched TV yesterday, but if I concentrate, and work through it step by step, I can usually remember what I watched, and everything about the shows. It is gone, but not totally forgotten. Sometimes it is just gone. Forgotten. How would I know?

I am guessing that the reason I can remember if I concentrate is because the memories are disjointed. Things get disconnected because of the missing time. My memories do not flow smoothly from one to another in the proper sequence. Usually a memory will connect to another bunch of memories. Lots of my memories are floating around all by themselves with broken connections. Just a guess.

This is all a huge change for me. In the past I had a phenomenally good memory, and was able to recall most everything in sequence whenever I wanted. For example at work I was able to remember what each number represented in a row of numbers 1200 spaces long, and where in that sequence each was located. That was my job, and I did it all the time. I can no longer do that. Not even close. Thinking back right now, I can remember only a handful of them, and even then I am not sure.

Speaking of numbers, and I just was, the issues I have with arithmetic are perplexing. Out of curiosity I pulled out an old research and design text. I can still understand very advanced statistical theory, and have no difficulty with extremely complex formulas. Coefficients of orthogonal variance are still a challenge, but they always were. Multivariate analysis is still simple if a little tedious. But I can't add a couple numbers in my head.

I can easily picture an addition problem with a couple numbers one above the other, a plus sign, and a total line. I know the algorithm of adding the ones column first, carrying over to the tens column if necessary, and so forth. I can see the problem, and I know what to do to add the numbers. I just cannot add the numbers.

When I think of arithmetic I have all of the associated memories and theory of the process. When I try to actually do the process there is a hole. It is blank. There is a big black empty nothing in my head where arithmetic used to be. I know where it was. I know what it is I need to think to think doing arithmetic, but when I think that thought that should result in doing arithmetic it connects to a nothingness.

I can picture a simple addition problem in my mind as if it were written on a blackboard. I can add the ones, carry, and add the tens. By that time I can no longer picture the result of adding the ones. I have to actually picture it as if I am writing it on a blackboard in chalk. Very visual. If I really struggle and repeat it several times I can come up with a tentative answer. It is a real struggle, but it is a kind of work-around for simple problems. It takes way too much time to be a practical solution in real life situations. It only works for really simple problems. The actual numbers I am thinking of are 19 + 49. It takes me 20-30 seconds to come up with an answer, and I am not sure it is correct. This applies to subtraction, multiplication, and division also.

I have made many modifications to the way I do things to accommodate these deficiencies. As long as I can recognize that I have an issue, I can take steps to work around it. So far they are working well enough so that I can function. I think of them as "work-arounds", and that is a good subject for a future article.

Comments are welcome.


  1. Thank you, thank you for writing this. I can completely relate - do not stop writing. Many patients and caregivers need this information.

  2. This is really the core of your blog -- what bvFTD is doing to affect your everyday life. I agree with Anonymous; thank you, and please don't stop writing. You found so little in the way of this type of thing when you were first diagnosed and now you are filling that void for so many people. Yes, it's different for each person with this insidious disease, but what you offer in personal insights is invaluable. The number of people you are and will be helping is infinite.


  4. wow. wish I could say that you say. Now how do I get my persons to read so they know what happens in my brain. So real. THANKS!
    Sylvia - 62. FTD/AD