On May 15, 2008, I was diagnosed with frontotemporal lobe dementia, also known as FTLD. It is a degenerative disease of the brain's frontal and temporal lobes that, I am told, will not in and of itself kill me. But it will make me less and less able to function over time. I intend this blog to somewhat document that progression. I hope to be writing on it for years to come.

PLEASE LEAVE A COMMENT - doesn't have to be long, just let me know you've been here.


Friday, July 25, 2008


As you will have noted, I haven’t made an entry here in quite some time, despite my promise to do so in my maiden entry. Part of the reason for this is just general sorriness on my part; but part of it – perhaps a larger part – is because it’s hard to write about a disease for which you’re experiencing few or no symptoms.

I now divide my life into two major segments: pre-medication and post-medication. The 10 mg. of Aricept I am taking every day, while not generally indicated for use with my disorder (it’s an Alzheimer’s drug), is working very well indeed, and while I still have occasional forgetful spells, they’re not as frequent and not as severe as they were pre-medication. Essentially I feel more or less “normal”, whatever that means these days.

But I’m finding out little by little what happened to me in the “dark days” from mid-January to mid-May, before I was diagnosed and started taking the drug that has helped me to return from the dark tunnel in which I was plunged by FTLD. And it ain’t pretty.

There are still large blocks of time from January to May where I cannot remember anything, even when people remind me of it. There are events, encounters, etc., where I can remember only part of it, or will remember just slightly when reminded. There are also events of which I have no memory at all, but that I know they happened as they’ve been described to me because it’s simply too unimaginable, too outrè for people to be lying to me about the things they tell me.

For instance, apparently the personality tendency toward lewdness, toward being quite literally a “dirty old man” while under the influence of the disease, was quite prevalent for me: I made a pass (at least one, maybe more) at one of my good friends (who is very happily married).I commented on the breasts of at least one grocery clerk and one bank teller, in a loud enough voice for them to hear me; and I’m not sure, but I may have sexually groped a dental hygienist. I’m afraid to ask.

And the really bad part of all of the above is that, with the exception of the pass I made at my married friend, I have NO MEMORY of having done any of it – I only have it on report from others, in several cases my wife, that I actually did these things. And I believe the reports, if for no other reason than that I don’t remember what I DID do, so cannot say with any kind of certainty what I did NOT do.

That’s a really distressing feeling – to know that you’ve almost certainly done something really kinda scuzzy, but can’t remember it. At ALL.

I have not been asked to come back to work at my freelance job since late March, because, I now know, of my symptoms getting in the way of efficient work; but I also have discovered that I said some things, apparently racial epithets though I cannot imagine why, at a meeting between my supervisor and his boss – and not only can I neither remember nor imagine why I would have said such things, I don’t even remember that I had such a meeting.

I had an apparently rather extensive series of tests called a neuro-psychiatric evaluation in late April, and with the exception of one very vague memory of a blue sheet of paper on which I filled out a preliminary questionnaire early in the process, I have no memory of nearly 7 hours of testing over two days. I just simply do not remember that I did this testing, and have only the word of the tester that it even happened. (Well, that and a rather detailed 9-page report on the results of the tests.)

And so, this is why today’s installation is called, “Shame”. I am ashamed of my actions, even though I don’t remember many of them, and they were not my fault, quite literally. The people to whom I did these things don’t know it’s not my fault, and therefore it’s as if I did what I did on purpose and with malice aforethought. It’s an interesting observation on the whole concept of personal responsibility, really – I have shaped so much of my adult life around the concept of personal responsibility; I tried to impart the idea of such responsibility to my daughters as they were growing up. And now, at the ripe old age of 55, I quite literally am not responsible for some of my actions towards others, and it makes me feel – I don’t know, kind of icky, I guess. Like I’m shucking my own responsibility for my actions.

Shame is not necessarily a bad thing – without sounding too terribly old-fartish, it’s arguable that a little more shame in our world might not be a bad thing. But it’s always easier to deal with shame if it’s happening to someone else….

1 comment:

Anonymous said...

Rich, you might be a little hard on youself. But look on the bright side, if you were a Conservative you wouldn't care at all.

Is that a lunch bell I hear ringing?