The brain involvement should be thought of in the same way as the outside physical wastage you can see.
If parts of the brain are wasting, it will depend on where that onset is and how fast the deterioration happens as to what symptoms and behaviours you will see.
So just like we can line up 5 PALS and find similarities and yet huge differences in how ALS is attacking their bodies, the ftd can take different forms and can progress at different rates.
It also was not recognised much for some time, but it is well recognised now as being a part of ALS. I believe the stats say that around 50% of bulbar onset have some degree of ftd, and lower % for other onsets.
To be honest it has helped me deal with it by accepting and understanding that his brain is wasting too. It's not 'him', it's yet another set of symptoms. I can also help prevent some triggers now and we have some good days. It takes a lot of energy from me however to create those good days.
Also since I got my husband onto anti depressants the rage, tantrum outbursts have subsided. He doesn't seem to go as wildly nasty. He does cry more now, but the upside is that he seems then to say more what is really wrong, rather than just flying off in a rage blaming me for everything, or the equipment or whatever.
Patterns are the best tool. Every PALS and CALS are struggling with huge emotions from this disease, but ftd will show you patterns. And you are right, others often don't see patterns, they only visit here and there, and the worst for me is if they start to stick up for him, making excuses. I don't usually say much to others about the ftd side of things. In front of other people very often he is bright and positive and all is good. So if I were to say stuff it looks like I'm being negative or not understanding him and his situation.
If someone does witness behaviour, then afterwards I can gently say, yes he gets like this at times.
My PALS will also sulk and withdraw sometimes for hours, sometimes days. I don't always manage to find out what 'I' did 'wrong' to 'cause' it ... :wink: