He gained 5 lbs thanks to my sister's new habit of feeding him almost every hour. Unlike other FTD patients who gain weight, my dad has been losing it - drastically! This happened a couple years ago too, it was actually one of the reasons we really pressed to get a diagnosis. He's down to 175 lb now (he was 170) and bloodwork, body scans, a scope, etc. have not given us any answers. Feeding him every hour (and pretty good size meals too - like Shell will make him a loaded sandwich and soup) is the only thing helping, but it's expensive! I can only imagine the food bill ... who'd think you could LITERALLY be eaten out of house and home?!
Also, the study that my dad has been a part of for the last 3 1/2 years is no longer going to see him anymore. Through this program, my dad had pretty frequent visits to a neuro/FTD specialist at the University of Penn every 3 - 6 months. They did testing during Also, once a month a med student was out asking my dad questions for the study. I remember some of the testing they did with him while I was there was something like a photo with some birds in a tree and on the ground and they'd ask my dad how many birds were in the tree to see if he answered that correctly or just answered how many birds he could see in general. They'd also ask him say the word to identify things in a photo. They were also always available for questions, suggestions on increasing/decreasing meds or helping us identify FTD symptoms.
I guess my dad has now progressed to the point that he is no longer assisting in the study. He doesn't really answer questions much anymore and when he does, you're not even sure if it's the right answer to the question you asked. At his appointment the other day, my mom said when my dad was asked what day it was, he answered something like April 1998 (not sure on the exact month, but yea - 1998!). The doctor also said that it is very obvious and very quick that my dad becomes anxious over answering questions now. What a shame...
I'm not sure what this means for my dad's future care. I was under the impression that the med students coming out once a month, the meds, the appointments at the U of P, the MRIs and such were all extended to us and my dad for free because of this study. If that's the case, I'm not sure what my dad's current insurance covers and that's concerning...
