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