update 8/4/14

Eyes are failing more and more, between them closing in their own and not being able to move them up or down there is a significant progressing. After the Botox infections his left eye starts to close again after 6 to 8 weeks, his right eye is soon to follow. Moving his feet is also becoming more and more difficult, it is not too bad around the house because he doesn’t have too far to go, however when he needs to walk outdoors or further than a dozen steps his feet start to drag and he has difficulty trying to move his legs. Mouth stuffing is still a big issue and still one of the more frustrating things to handle. No matter how many time you tell him not to do it he continues to. He needs to be reminded every time he eats and throughout the meal, the kids and I normally have to tell him a minimum of 6 times during the meal. He has also started to hold the food in his mouth, he just fills it and sits there with his cheeks puffed out until we remind him to chew. He is also doing this with drinks (coffee, water, etc.) sipping and filling his cheeks and holding it there while he watched TV. The incontinence has also progressed, to the point that sometimes he wets himself and doesn’t even realize it. He has not had an angry outburst in quite some time, he is much more apathetic and doesn’t really care much about what is going on around him. He does however remind me every morning to pick up his papers and buy his lottery tickets, this coming from the same man who can’t remember to not overstuff his mouth after being reminded 20 times a day for the last 5 years… How do they remember something’s and not others? Healing has been an issue too, if he bumps his leg it takes so long to heal them leaves a discoloration that does not go away, not sure why… Oh well just logging items so I can have my record of his illness hoping maybe someday it will help someone. He has decided to donate his brain to PSP.org and I am told they like to have a description of the progression sent with the samples because they don’t get to see what they were like. The neurologist is also taking videos to send so they can see firsthand, I might start doing it also.