Ya know, America's no fun any more.

Seriously, I'm just about old enough to remember when it was really fun to be in America. It was back in the 50's and 60's mostly - a bit of additional fun was had in the 70's and 80's, but by the 90's, it was all gone, and America was at war with itself. And remains so to this day, I'm sorry to say.

Of course, I missed the 40's, which were not so much fun... World wars do have a tendency to cut down on the fun times.

You see, young people, history is not all drudgery and memorization and rote. It's also the source of who we are and who we will be, and I don't know about you, but it makes me happy to read history. Because it's like a big, sprawling story book.

I don't know, this wasn't what I started out to talk about, but I've been watching movies and reading about some historic eras, and it made me all keen to step up on my soapbox. Just a short post.

RM

2 years on

The neurologists have lost interest in me. It's more than 2 1/2 years since my diagnosis, and I've improved a great deal. But there are still great gaping holes in my memory. I remember very little from November 2007 to May 2008. It's weird, I just simply don't remember much of anything. And I still have occasional periods where I can't remember things, and it's really annoying. Not to mention debilitating in certain ways, and really off-putting to those around me. I mean, I was out and about, driving a car and everything during this period of time. And sick as a coot, and no one knew it. Not even me.

I thought perhaps some enterprising neurology intern would want to do some sort of study on me, since my disorder is so rare. But it's so VERY rare that there is no therapeutic reason to do such a study - it won't benefit enough patients, I guess. So, no interest in me as a guinea pig.

I've developed the habit of warning people when I'm likely not to remember things. A lot of my regular acquaintances are getting used to it. Some of them actually joke about it a little. But to me, it's like having an eraser in my head that only takes part of my memory.

And I'm still sleepy a lot of the time. When I wake up in the morning, I have no idea what sort of day it's going to be. Most often, if I do manage to do something productive in the morning, I need a nap by 2 or 3 in the afternoon. A couple hours on the couch, then I get so sleepy I can't keep my eyes open after dinner. And sometimes I'm asleep on the couch till 3, 4am. Then off to bed.

But anyway - at least I'm not in any pain. Lots of folks much worse off than me. The only thing even remotely resembling pain is a discomfort in my hip joints and knees from being seated so much.

I don't have a regular job. I've got a Social Security disability payment of an amount just about enough to ensure I'm never able to do anything but pay a few bills with it. I pick up a bit of odd work here and there, which encourages me, because it alters my sleep patterns during the day. I still get sleepy, but not as much as when I have no work.

And that's about it. Life with no meaningful work. My sig. O has gotten fed up with me, and I don't blame her. I must be a trial to live with. And I hurt her tremendously a while back, while I was under the influence of the disease, and she simply isn't going to let me make it up to her. I guess I can't blame her. She has no way of knowing if I'll ever do it again.

Just thought I'd let you know.

Another Diagnosis

I can't tell whether I'm pissed at the medical profession or not. I've been re-diagnosed and it appears I no longer have FTLD, or indeed never did have it. Instead I am now believed to have a rare but treatable disorder known as Hashimoto's encephalopathy. It's so rare that it would seem there are fewer than 100 sufferers of it in the entire United States. Or maybe not. There is a fair amount of misinformation and partial information about this disorder, and I'm having a bit of trouble keeping the facts straight about it. Not least because part of the symptomology includes forgetfulness and low concentration levels.

Anyway, I now have a blog with a few entries in it on a topic that no longer applies. Maybe I'll get ambitious and move them all to a new blog that IS on topic. However, another of the symptoms is a nearly complete loss of ambition and drive to do ANY effin' thing, so - maybe not. I'm a little surprised I've even had the gumption to write this much.

Hey, at least it's treatable. Though there are about a zillion suggested treatments. And at the moment I'm not getting ANY of them.

More when I know it.

June 28, 2008 - the Opening Salvo

by Richard Hauenstein

PAY NO ATTENTION TO THE DATE AT THE TOP OF THIS POST. I KEEP MOVING IT INTO THE FUTURE IN ORDER TO KEEP THIS INTRODUCTORY POST ON TOP. THE ACTUAL DATE IS IN THE TITLE.

The first day of my attempt to write about the fronto-temporal lobe dementia (hereinafter known in this document and throughout this blog as FTLD) that attacked my brain last month. I’ve wasted over 6 weeks since the diagnosis was delivered, but I simply couldn’t bring myself to address the matter in any kind of serious way before now. In fact, I’m still not sure I’m brave enough to do so. It's kinda scary to know that your brain is shrinking - betraying you in a sense.

As you read this you should be aware that it is being dictated with Dragon Naturally Speaking version 9. I will make every effort to edit it and get it into the form intended, but I cannot promise that there will not be some bungles in the dictation, some of them potentially quite serious. Bear with me, and with Dragon Naturally Speaking.

A bit of history: I’m 55 years old (3/17/53), married with no biological children, though I have a total of 6 stepkids . I live on a small farm in Shelbyville KY, about 40 miles east of Louisville. Before things started getting out of hand for me, I was a voice performer – actor and narrator, particularly of Talking Books for the Blind at the American Printing House for the Blind in Louisville.

On May 15 of this year, I received a diagnosis of frontal-temporal lobe dementia. If you're viewing this website, you probably have at least as good an idea of what that is as I do, so I will provide this one link to a one-page précis on the disorder for those who do not:

http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=573

A good portion of the first third of this year is lost to me-I have little or no memory of it-and a good portion of the rest of that third I wish I didn't remember, because I said and did things about which I am very embarrassed, to people who did not deserve it.

My purpose in starting and, I hope, maintaining this blog is essentially twofold: first, as it is very likely that I will be unable to keep such a record in years to come (at least I hope it will be years, not weeks or months), I want to speak out, to tell anyone who may read this what it is like to have this disease, and to see it progress over time. And second, I want to use this record as a way to acknowledge and thank all of the people who have already helped me so much, and who I hope will do so in the future as well.

At the very top of this list is my darling wife, Jessie, without whom I cannot even imagine where I would be right now. It was she who, after an initial series of misunderstandings about my condition which were perfectly natural since I was acting like a real shitbag, recognized that there was something genuinely wrong with me and got me to the proper doctors. It is she who, despite having to work a full time job, and pay all the bills since I am incapable of being trusted with that task any longer, and do virtually all of the cooking since I never was capable of that job, still manages to love me and, at least most of the time, treat me with respect and care, with love and, as corny as it sounds, with devotion. I have been married four times, Jessie being my fourth, and for as long as I have known her, even for the brief period before we were married, I have been unable to imagine a more perfect wife for me. I used to jokingly call her my "ideal woman only shorter", but even that tiny little qualifier no longer applies. I adore her, and most of the time, it seems like she feels the same about me.

Anyway, this is enough introduction for now. The next couple of weeks are going to be rather busy, so I may not have time to add anything, or indeed to make my first genuine entry beyond this introduction. But I will leave this blog open for comments, even before I've well and truly said anything, because it's my belief and I hope yours that whatever the experience of this disease may be for any or all of us, it will be somehow easier if we may share it.

Thanks for reading this far. I hope soon to provide you with more of the view from Richard, and hope that you'll share anything you have to say as well.

Please leave a comment of some sort. Thanks.

SHAME

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….