PSP Association
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Dr.'s Prognosis

We had an appointment yesterday with GP. He right away said to Jim "You are losing weight". I said that that is why we were there. We talked and he said I was doing everything I could but because of the disease, eating wears him out and he is having more trouble swallowing which also takes a lot of effort. His drooling is profuse at this point as well which is a sign of swallowing difficulties increasing. He said the best I can do is just keep him as comfortable as I can. He gave me a prescription for Ensure, a meal replacement and said to keep doing what I could. I slipped back into his office and asked him what his prognosis was and he said that he figures that by the end of summer he will be in care and we are probably looking at around 6 months. Not good but we discussed feeding tube and we both agreed it would not give him any quality of life at this point. I guess that kind of answered my questions. We are going away next weekend to the Shriner's Convention as this is something he enjoys. It will be very difficult but even if he just gets into the parade he will be happy. He will probably sleep the rest of the time. Hopefully he will get some good times together with the boys. I will just have to look out for the good times he can have regardless how small.

3 Replies

Sad to read this, it's such a terrible illness isn't it, sounds as if you do everything you can to keep him comfortable and happy , my best wishes to you and I pray you have some quality time together until he is out of his suffering .


So sorry for you. It's the hardest thing to watch them deteriorate.


When they told me "it's a quality of life situation"... a cold shiver went up my spine. being a special ed. teacher, I had more experience "with quality of life" and it was never good. These students could not do anything for themselves and I was to teach them math. If I could get them to look at a number each time I said it and gave them picture of amt of objects , it was a good day. Now I have quality of life with my husband? Well then that's what were going to do. We don't do much but we do do happy. And so are you. I am sorry they give you the prognosis, but taking him to the things he loved is indeed giving him the quality of life that hopefully will make you both happy. As you come to the end please do not deny your spirit cuz God is waiting over on the other side.

Sincerely AVB


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