no dementia
I started on the clinical trial at UCLA today for the new emotional lability drug "AVP-923." I am actually feeling quite a lot better already ... which MUST be the placebo effect! I am so suggestible, they could give me an M&M and tell me it would make me 19 again, and I'd start doing the twist.
I also took my list of symptoms ... both my "dementia" and my "PSP" symptoms ... and the woman conducting the trial went over them with me very carefully. I told her that I am not having depression ... my big emotional problem is anger and frustration. If I'm under stress ... or even when I'm not ... and people "refuse to understand me" I just lose it. And, frankly, having ALS really p****s me off.
She said that's not dementia ... that's ALS, and she'd react the same way. She said there are three aspects to ALS ... nerves, muscles, and emotions. FTD is a different animal, and she didn't see any indications from my list that I had it.
As to the PSP ... I didn't ask her. She did not remark on the double vision or swallowing, and I'm just going to put them down as urban legends. I'll get prism glasses, and solve the reading problem myself. Sometimes the human body doesn't behave the way textbooks say it should, and I can't see any solution for this except to deal with it.
I had been certain of the FTD, however, as I had had some extraordinary episodes of euphoria last winter and spring ... amazing, transcendent experiences. So (Sorry, Wright
) after I was diagnosed with ALS, naturally I Googled "ALS euphoria" thinking I would get something like, "ALS makes people spiritual," and instead came up with dementia! So I've been reevaluating experiences like mad to see if they fit the definition. (As I have shared endlessly.) I do crave a "narrative" that will make sense of all this ... we live by telling ourselves stories ... but when has life ever made sense?
Anyway, I have decided that ALS is enough for me to handle. If other conditions arise, they'll just have to take a number.
BethU