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.

Thanks.

Thursday, August 28, 2008

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.

3 comments:

bayathena said...

Was searching for you to tell you how much I enjoyed your reading of the Kite Runner.

Very upsetting to learn of your malady. I am both a psychologist and a writer and your illness resonates with me.

Did not see an email address posted. If you feel like doing so, I can write to you.

Holly Hinson said...
This comment has been removed by a blog administrator.
Holly Hinson said...

Hello Rich, I have wondered about you a lot over the years and have read many of your letters to the editor with satisfaction, often amusement but always remembering your very keen mind. I just stumbled upon this blog today and I am terribly sorry to hear about the FTLD.

If you would like to email me back and tell me more about how you are doing and how you have been these last few years, I would welcome the communication.
My email is hollyh_s@yahoo.com

Holly Hinson