As my symptoms change/increase (I have PSP-cerebellar ataxia with dementia, or so I’ve been told by a neurologist and a neuro/psych specialist) I have started to check into this site more and more for information. It has helped me stay ahead of the “game” as no one in my family talks to me about this. Not sure what will happen when I require more care, but I’ve already stated that they are to send me to a nursing home or hospice when that need arises. I’m already being seen by Palliative Care (my neurologist recommended along with counseling and a psychiatrist to handle the meds). I guess it’s up to me to find a nursing home (as I feel my hubby won’t be comfortable with the level of care needed), a lawyer (they’ll tell me what I need to do legally) and a funeral home. It makes me a little sad that my hubby only occasionally makes me a meal (not allowed to cook anymore), drives me to appointments (not allowed to drive), occasionally reminds me to take my meds (I forget a lot) and occasionally cleans the house (something I have extreme difficulty doing). My kids are super busy with their own families. Sorry, I know I’m whining like a spoiled child, but I’m feeling pretty alone these days and not seeing a light anywhere in the tunnel. I love your funny or poetic posts, pictures and all the valuable information I’ve gained from this site. You all are a blessing to me!