Need input

I feel silly posting this so please bear with me but can anyone tell me if one can go into remission with PSP? My husband has gone from 3 bouts of pneumonia in 2 months and having to use oxygen night and day to using no oxygen day or night and lungs being clear. I'm not complaining just terribly confused. His balance is still terrible but not any falls for awhile now thank heavens. I want to trust and enjoy this but I've never heard of this. Is this PSP or something else? I know I should enjoy this a day at a time. But when it comes to PSP, nothing is ever constant or simple. Thank you for any input you have! By the way, we have a new granddaughter just 5 days old. Could her birth be a factor in this? Love to you all!

8 Replies

  • No this dosnt sound silly we have been called in 3 times and mum has had 4 chaplains she couldn't talk for 5 weeks now she can, the thing is it plays havoc with us as a family, very stressful cause you set up for the massive fall then boom they are alittle better but where does it leave the family apart from confused x x

  • Oh sorry we thought the same my daughter gave birth 4 weeks ago thinking that but no x x

  • Oh sorry we thought the same my daughter gave birth 4 weeks ago thinking that but no x x

  • Thank you Masie. I guess it was just wishful thinking on my part. This wretched disease has always kept all of us on a roller coaster ride. I've come to realize the only thing you can count on with PSP is change. I always feel like I'm playing catch up. Thank you again and love to your family and new little one.

  • Fortunately my husband hasn't had chest infections yet so we haven't been through this. Years ago I was a care assistant in a care home. Many times relatives came and sat around the bed of their loved ones as they had severe chest infections and weren't likely to survive. I'd go home, return a few days later to find the resident sitting in a chair. As all the residents were retired missionaries they were most annoyed that they hadn't been taken and couldn't wait to be with their Lord. My own father, who didn't have PSP, had several hospital admissions, unable to breathe and using oxygen but returned home again as well until this time last year. The day before he died I was told by the doctor that he could go home. So we rarely know the exact time we'll be taken. I do hope your husband remains stable for a long time so you can both enjoy your lovely new granddaughter. Congratulations to you both.

    Nanna B

  • NannaB thank you for your response. I'm confused I think partly because I was told not 2 months ago my husband only had 6 months to a year to live. I've never been interested in these numbers before because only God knows for sure when our time is ended here. I was totally taken by surprise by this turn of events. All of you out there have been extremely helpful in navigating through this. Peace and love to you and yours.

  • In my experience the downward slope is not a straight line, and sometimes things do get better. My guy went from using a walker and being prescribed a wheelchair over a year ago to using just a cane for the better part of the year afterwards. He's only just this week gotten so unsteady that the walker (zimmer frame) is appealing to him again. I think we can only try to enjoy each day as much as we can. None of us knows what tomorrow will bring. Love and Peace, Easterncedar

  • easterncedar, thank you for sharing your experience with me. I read and re-read all responses and I think I understand better what I've been seeing with my husband. I know there's no cure but I still can't help but pray for a brief interlude at least to the symptoms of PSP. You've helped put this in perspective for me. Thank you for your response. God bless.

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