12/12/13 Last evening Bernie had another incontinence issue, I was up changing the bed at 3:30am.Everytime he has an accident he tells me he was dreaming, I am not sure why he says that, if he feels he needs and excuse or what but I don’t think it has anything to do with dreaming. I always wonder what gets him up after though because half the time he is getting out of bed and that’s what wakes me up only to find out that he has wet the bed. When I got up for the morning at 5:30 I set the coffee maker up, took the dog out and then started my shower say about 5:45, half way through my shower I heard several bangs, I always leave the bathroom door ajar so I can hear him should he get up. What he had done was instead of coming in the bathroom like he usually does when I am in there, he attempted to go down the basement stairs to use the downstairs bathroom! He was very luck that he had ahold of the railing and stumbled a few steps at a time, although he fell and stumbled several times as he was attempting to get up. By the time I had gotten out if the shower and dried off a little he was upright and at the top of the stairs completely out of breath. He had quite a large bruise and skin burn up one side of his arm running from elbow to wrist and the other arm looked to have a smaller patch of run burn. I got him back in bed and explained again how he needs to stay on the one level of the house and never go down the stairs alone, he was lucky again not to hurt himself too badly but he is pushing the envelope and one of these times he is really going to hurt himself. The hardest thing about this condition is that the people affected don’t seem to have the presence of thought to realize they should not be doing these things like walking up or down stairs, putting pants, shoes, or shirts on while standing etc, using common sense just is no longer an option for them, they don’t seem to have that ability. The doctor has mentioned to me that it is time to think about getting a mobility scooter to get him from room to room safely but I am nervous about putting him in something that he can hurt himself in. I am doing a lot of research on the scooters and hope to make an educated decision soon. Signing off for now…

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……..

I have not posted in awhile because things are not really changing significantly. I have found in Bernie’s case that he will go through a downward spiral for a week and plateau, the pattern has no real timetable but I would say it happens at least 5 times a year. When you live with a person who is affected by this disease I think you grow so use to it that you tend not to notice just how bad they are doing. I will say that his eyes are now significantly affected, his blink rate is very low, the Botox is not working as well as when he first received the shots. His eyes start closing earlier and earlier, he gets the shots every 4 months and they use to last about that long then it start losing the effects at 3 months, and now it’s like 2 to 2 ½ months and they start closing again. He is also losing the ability to move his eyes in the downward motion, although not completely lost there is a significant loss in that area, which is where the “palsy” comes in naming the disease. His speech is really bad, to the point that I can’t hear him! That is such a scary thought should he need me for anything. Just today I ordered him a personal voice amplifier and I am hoping it will work and that he will use it.  Part of the speech issue is the loss on muscle and nerve function in the throat (which also ties in with the swallowing issues) and part is due to the diminished lung capacity. If Bernie walks up the 5 or six stairs into the house he is out of breath, longer walks like in the grocery store also make him tired and breathless, any activity done during the day will make him very tired in the evening.

I will say that I think he is doing better than I would have expected when first hearing the news, I attribute that to the fact that he was afflicted with this at an earlier age than most and the fact that he was in great shape back then. I will post more when I feel I have things to say, I hate to just get on a ramble about the same things over and over again. But if I hear from anyone in particular I will certainly take the time to help in any way I can.