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.