Monday, November 21, 2005

Memory loss

As some of you know, I have a little memory problem. This has been going on for over a year and honestly at times I'm completely "over it." Once again I am gathering my information and energy to try and get a clear consensus diagnosis. We now know I do not have a brain tumor nor have I had silent strokes. It took months and tens of thousands of dollars to get to this point so it is with great fear and financial trepidation that I wade into the medical waters again, but here goes.

I have found a grid that might be helpful if you know someone, or if you ARE someone, with memory or cognitive loss/impairment. http://www.adrc.wustl.edu/cdrGrid.html There is an interview type of test that is done and this is the scoring grid. I haven't had the interview done. Reading the test and reading the grid, I'd say I'm 0.5, BUT my incredible insight late last night was this; I know how hard I work to keep track of what's going on. I know how I side step things I can't remember or figure out how to do (like sometimes I can't figure a tip or organize my day), BUT if you're just watching me you wouldn't see that. Neither would a medical person. So, while I have stopped volunteering and simplified my life, taught our kids to navigate when I get confused or lost while driving, I'm still only every so slightly impaired compared to ::gulp:: where I could be. So if I continue down this dementia/cognitive loss road and find that a clear diagnosis is not to be made perhaps it's just because I'm over-aware of my loss and not crazy?

I have spoken and emailed with some research facilities to try and get in a research study. I hope a research study will get the testing done without adding to my outrageous medical debt. Wish our marriage were recognized, then I'd have insurance, but that's another rant. I am deeply hoping to hear back from any of the research studies. So far I know I've talked to Chicago and St. Louis, but can't remember who/where and didn't write it down. Okay, I think I've talked to those sites, maybe just emailed with no response. I'll let you know if I get in a study. They all involve travel at this point, but we like St. Louis and Chicago and would welcome any excuse to return. Until then I'm knitting and living a simple small life.
Go hug the ones you love and be grateful they're with you today.

1 comment:

Quiara said...

I've been browsing backward through your blog and found this.

I know you've made comments about the memory thing before, but it honestly took me until a couple of weeks ago to put it together.

I admire you for being open about it. (Well, and for a ton of other things, too, but I'll try to stay on topic for this comment.)

I've really enjoyed the little time I've known you. You're truly an amazing person.