Hi, all ... this is an old thread, but I am concerned about FTD/ALS combination, and would love to have feedback. Have had speech and eyesight (blurred/double vision) problems for 2 years, swallowing problems for 1 year, and speech is very, very bad now. So far, no limb involvement. After 6 neurologists and a variety of diagnosed, I was diagnosed with ALS 5 weeks ago. Have not yet gotten into a multi-disciplinary treatment program, but I think I'm getting close.
In December I was in the hospital for respiratory failure, and in ICU experienced intense periods of euphoria. (Don't think it was drug related, but who knows?)
Toward the end of my stay (2+ weeks), my respiratory therapist started to really annoy me, and I "decided" ... "the heck with being Ms. Nice Guy ... I'm going to nail him." I started really needling him and got him much on the defensive before I left. The day I left the hospital, I got into a huge shouting match with contractors who were working on my house (despite my lack of intelligible speech, I communicated pretty well, with some not-very-nice language that they managed to figure out) This display of rage astonished the people (my in-laws!) who had brought me home. Then the next day, I got annoyed with the home-care nurse and started being really b****y to her, to the point where she refused to come back.
This was NOT normal behavior for me! The whole rage/annoyance thing lasted about a week or so, but then I returned to normal, feeling really badly about the way I treated these people. (Not the contractors, however ... they deserved it!) I figured it was probably just exhaustion and stress from the hospital, and have pretty much forgotten about it.
Since then, I've been OK around people ... but I still keep getting those bouts of euphoria, as intense as they were in ICU. And it's definitely not drug related now. Frankly, it feels great ... waves of excitement and joy wash over me. A rose bush develops a bud, and I'm thrilled to pieces! THRILLED! I rush to get a camera and take its picture and drag my husband outside to look! (Of course, he thinks I'm nuts.) During these episodes, I feel like I'm in love with the world.
I was going to post a query on this forum as to whether others feel this kind of euphoria, but first I Googled "ALS and euphoria," and discovered to my horror that this could be part of something called frontotemporal dementia, which is associated with a certain percentage of ALS patients. Personality changes, mood swings, euphoria, sometimes apathy (which I have not experienced), social aggression or lack of tact, impulsiveness, and all kinds of other unpleasant things may be part of it.
Eek! Reading this old thread, it seems often FTD starts first, but I have had bulbar palsy symptoms for 2 1/4 years now and the euphoria episodes for only six months. Does anybody else have personality or mood changes, or know if they can be controlled?
And here I was really enjoying these episodes of sudden happiness ...
Beth