I've been following the site for a while but this is my 1st post. I am the caregiver for my dad who was diagnosed with CBD in Jan. 2016. Dad lives with me and my family, we've setup his room with hospital bed etc. He is being medically cared for with the US Veterans Admin Dept. and they have been fantastic! He is enrolled in the Home Based Primary Care program so his doctor, nurse and support people come directly to the house instead of us going to them. We only have to go there if specialty work or tests are needed.
Piecing together what info I have (dad didn't live close to me for a number of years) I am guessing he is about 5 yrs into the disease. He is wheelchair bound now, well basically 100% dependent for everything.
The one concern I have that no doctors have been able to answer is recently he has been having what I call I "waking blackout" for a short period he forgets everything but is awake and can answer questions. Sometimes he gets really emotionally when it is occurring and he NEVER remembers the event. The episodes are sporadic and usually preceded or followed by a bad headache.
One day at a time, always forward...