Checking In

11/11/13 Feeling like it is time for an update. Bernie’s progression has been mild to moderate, I notice these changes more than others because I am with him the most. His eyes have definitely progressed, they are at the point know where he can’t look down at all. When he is walking he has to have his head tipped forward so he can see where he is walking. Although I do not put a bib on him he certainly could use one, every time he eats something ends up on his shirt. His voice is all but gone and he is having much trouble with his eyes. Although he has Botox in his eyes every 4 months his left eye is almost always closed, I would say 98% of the time for his left eye and usually about 5 to 6 weeks after the injections his eyes will start closing again and will get progressively worse until his next injection. I don’t know if the doctor will stop giving the injections at some point, I am going to ask at our next visit. His breathing and or lung capacity has also progressed, if he has to walk up the 5 steps it takes to get in the house he is breathing heavy, the same with getting in bed, it makes him breathless. He recently fell down the steps leading out of the house (11/5/13), he was by himself trying to take the dog out. After tumbling 5 cement steps he could not get himself up and lay there 30 minutes until one of our neighbors saw him and came to assist. He was able to help Bernie into the house and into his chair where he stayed until I got home from work about an hour later. He is supposed to keep his cell phone on his person at all times in case he needs to dial 911 or me but he can’t seem to remember to do that. If I give him his phone before I leave the house he seems to set it on the end table and forget about it, I now learned that I will have to put it in his pocket before I leave the house. When he fell he hurt his elbows and his right knee, when have had an x-ray and MRI showing a swollen tendon above the knee and arthritis, we are now waiting to hear what course of action we need to take with that. After falling on Tuesday he has fallen at least 10 more times and on one of those backwards falls cracked some ribs, if the doctors were to take his clothes off I think they would have me arrested because he is bruised from head to toe. I still work 4 days a week and have to so now I am looking at my options for in home care a few hours a day for him. It is such a hard call because he is still pretty independent and wanting to do everything himself and to look at him you wouldn’t think he was that bad but he just can’t be trusted to walk around and not fall…and especially now with his knee injury… I sometimes wish this was a more textbook illness so one would know what to expect next but instead it’s all a mystery….. Kelly

checking in

July 11, 2013 Where are we now…Bernie is falling more and definitely more unsteady, his eye are losing their ability to move especially down, and he is having a hard time focusing. Bernie has also had some bouts with other issues but I don’t want to say everything is related to PSP but I am unsure whether it is or isn’t so we just deal with it. He has had several weeks or bowel incontinence where he will just have diarrhea anywhere from 2 to 4 days, he has had this 4 weeks in a row at one point and now for the last month no loose stools. His apathy is worsening, his lack of interest in most things is very noticeable, he is only interested in his morning papers (which take all day to read now), and he is hooked on HGTV! He stays up late and would probably stay up all night if I didn’t hound him to come to bed. I keep telling him that sleep and rest is good for his overall health and well being but it doesn’t seem to matter to him. It is at the point where it is starting to affect me and I hate that because this is not about me, but I find myself angry at times about everything that is happening, frustrated that he can’t help me help him, and lonely as I miss the man he use to be. The progression of the illness is taking the best of him and I can’t do anything to stop it. I need to stop writing now……..