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.

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Friday, December 3, 2010

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.

1 comment:

Cletis L. Stump said...

Rich, I had polio as a child and am once again fighting the effects. I posted my e-mail on your other blog today and would love to get to know you better. Cletis aka Jerry