I feel a kinship with the Lewy Body Dementia Association staffers. I’ve written for their website. I’ve laughed with them, shot hoops with them, gone to Vegas (Lewy conference) with them, worked with them to raise money for research and awareness.
They’ve been good folks. Now they’ve come out with a checklist that is giving me a headache.
But it’s not their fault.
The LBDA checklist is good. But probably because I have Lewy body dementia and I am trying to cover same dementia. Things get complicated. With a Lewy on your back.
So the source of my headache? I decided to fill in the boxes on the 2-page list of symptoms. Do I shuffle when I walk? Yes. Not all the time though. Do I have a weak voice? Yes. Sometimes. Do I have hallucinations? Yes, but rarely. Does my handwriting/typing suffer or change. Yes but well controlled with medication.
And on and on with the symptoms with me checking about 90 percent of the 40 or so boxes but I was left with a desire to add more context beyond checking a box.
LBDA recommends that you take it to the doctor where you could then give context to each of these two dozen or so symptoms. Again great idea. But by then you may have forgotten the nuances . For example, do I drool? Depends on what’s cooking, no, sorry couldn’t resist. Real answer, rarely.
So, anyway, my headache came on when I saw that i was checking nearly every box and appeared near death. When in reality, I feel OK much of the time. I am definitely not criticizing this great idea but i have one slight suggestion to make it more useful.
It’s easy as 1-2-3.
Below is a partial piece of the checklist which I have quickly filled in with my 1-2-3 grading system.
The 1 means frequently; the 2 means occasionally and 3 means seldomly or rarely. Leave blank if never.
And that’s it. I think I may try it at my next doctor’s visit and report back.
I just realized that I am glad I cut the list off where I did lest I share to the world my grading on constipation, delusions and sexual dysfunction.