For at least a year my husband progressed rapidly with PSP. It seemed symptoms were popping up weekly, sometimes more often. We never knew what to expect. About a month ago the progression seemed to have come to a halt. It's certainly not a bad thing, and could have happened before he got to this stage. My question is, has anyone else seen this in PSP, this stop of progression after rapid decline?
thanks, joan
Hi when mum got to fully middle stage she did have a period of time of around 3 months when she was stable and only began to progress further after a drugs trial which was supposed to improve her sharpness but all it seemed to do was send her plummeting. I must add she did have a very fast progression otherwise possibly accelerated by her age of 76.
It is not unusual to experience periods of stability during the progression of PSP. My wife has had several during the past 8 years or so. Unfortunately its not remission and eventually the deterioration continues.
Hi so sorry for you. My husband’s 5+years PSP is quite similar all along the last 3 years. The progression advances not systematically . We can’t predict how next week will be . “Surprises” all the time. Even now, when he is no longer able to spike, sits only 2-3 hours a day and moves only very slightly the progress is not consistent. Prepare yourself to the unexpected.
nel
I agree with the assessment of the others. There are periods of time when Dad seemed not only stable but as if he had progressed. There seems to be no rhyme or reason as to why this occurs or how long it lasts, but then the next phase starts, it is deteriorated from what was before. From my research from the NIH, this is a known progression -- a plateau and when the "end" of the plateau is reached, it's another downward slide. The curious -- and frustrating -- thing is that we never know how long the plateau may be or how steep or long the slide that follows.
Cindy.
Hi Laroux,
My husband has not as yet had any plateaux or remissions. His PSP has been one of continued progression. His GP said she had expected to see the condition plateau at some stage and is surprised it hasn't as yet. However, we do have some days when he appears brighter than others. We try to make the most of those days.
Best wishes.
Peter3.
Could it be that we are so involved in care we think is has slowed? Others who don't see him often might think it has not slowed. Just a thought.
Jimbo
Dear Laroux ---I don't recall any such status quo in my brides PSP...but it's a nice thought that this malady has to rest for a while--what's more ,giving some respite to you the carer. Enjoy! best ULTRAMODERN
Thanks to everyone! Yes, of course I am waiting for the other shoe to drop. I almost feel calm for the first time in a long while. Although I must admit I do still find frustration in the demands this disease has on me. For now I will be greatful for the slowed progression and take it as it comes.
joan
Hi Joan, my mum is the same at the moment. She deteriorated really fast over a short period of time and it seemed like there was something every week. However for the last few months there has been no deterioration at all and seems to be on a plateau. How long this will last I don't know, but this may be the calm before the storm. I'm trying to be prepared but you get lulled into a false sense of security.
Best Wishes
Liz x
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