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Wednesday, May 19, 2010


Denial - I can't deny what I can't see.

From reading the posts on this site it would appear that all I think about is dementia. It would appear that it effects my every waking moment. That could not be farther from the truth. Most of the time I don't think about it at all, and am completely unaware of any effects from it. I don't notice anything different. I feel completely normal, and I see myself as I have always been.

It just so happens that the part of the brain which keeps track of how you are doing - the part that gives feedback and self assessment - is located in the Frontal Lobes. It is actually a symptom of bvFTD to not notice anything is wrong. From what I have read, as it progresses this gets worse, and contributes to unwanted behaviors because subjectively they seem normal no matter how bizarre they may be.

When I look at myself, and examine my dementia, it is as if I were looking at someone else. I am very detached from my own condition. It is like I am looking at an interesting bug through a magnifying glass. The glass may be clouded or distorted sometimes, but it is the only glass I have. Most of the time, I am not looking, or even aware the bug exists.

What this means is that subjectively I do not feel any different. It is only when some very obvious change comes to my attention, or is pointed out to me, that I notice anything at all. I finally noticed that I could not do mental math, but it was probably going on for months or years before I finally noticed. I just wasn't aware of it and used a calculator for everything. I just automatically adjust and create work-arounds without ever noticing I did it.

It amazes me that I have had a drop of 30 points in my IQ without ever noticing it happened. I still have a huge collection of knowledge, I just can't use it as well as I used to. Subjectively even big changes like that look normal from my perspective because I still see me as I was before - at least most of the time I do.

That is not denial. That is truly the way my brain is telling me I am. That reflects my impaired assessment of ME.

Denial is different. I have that too.

I still sometimes question whether or not I have bvFTD. I still feel normal to me. I think it is just a bad dream, and I will wake up and everything will be back to the way it was.

Most people would never notice anything is wrong with me at all. At least I don't think they would. So, if nobody can see anything wrong, maybe nothing is.

Well, I know different, and the evidence is right there in front of me. I have heard it from my Family Doctor, my Neurologist, and a couple of Neuropsychologists. These little side trips of actual denial do not last long.

Most times I just bounce along through life -  fat, dumb, and happy -  like I always have, completely unaware of any changes.


  1. Kind of like me still thinking I'm skinny!!

  2. Thank you so much for sharing these personal details about yourself. My daughter has dysexecutive syndrome and desperate to educate myself, I came accross your story. As I was reading, I couldnt believe that the story wasnt written about my daughter, the simularities are incredible. Your story has answered soooo many of my questions and explained so many of my daughters behaviours to me. I thank you so much for sharing, I have learn some invaluble info from you and I will forever be greatful. Best wishes to you and God Bless xxxxxx