Hi Deb, I am so sorry. This disease is relentless and is hard to describe to others because every case is different. My sweet hubby has lost down to 142 lbs and is completely incontinent. Because he was always very athletic, he is still walking but not as well. His vision has been affected and he walks into walls, falls on the floor when he thinks he is getting into bed, sits beside the chair and not on it causing a fall, etc.. He eats, but we usually have to feed him. Somedays he sleeps 22 out of 24 hours, somedays he sleeps 2 out of 24 hours. He does not like to be changed, and that is always very challenging, but we get the task accomplished. I am always tired, but I am also more determined than ever to finish strong and be there for him. I pray you will be able to take great care of your sister and find moments for yourself (much harder than it sounds). God bless you for caring enough to take on an impossible disease, and make your sister's journey one with centered with so much love. You are a very special person.