Hello, I was wondering if anyone can help me…. My dad has been diagnosed with PSP only a few months ago but has had symptoms for about 18months. His recent symptoms were textbook stage 2 but quite independent ….. this past Sunday morning he woke up feeling a bit off and then suddenly lost feeling in his legs, couldn’t stand up and was completely confused, dazed and almost non verbal. He was taken to hospital, but he is now a shell of who is was a few days ago….barely able to open his eyes (or eyes rolling around in his head) and unable to understand basic questions, sleeping almost constantly and has gone from being almost independent to needing around the clock care overnight.
I was wondering if anyone can offer their experiences of whether this is “normal” that symptoms progress so rapidly? I completely understand that everyone is different and that there is no “normal” but I am just searching for some supportive answers as to whether this is very unusual for an overnight downturn in both his physical and cognitive state.
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Hi, sorry for the short reply but I'm out at the moment but wanted to reply to you.In a nutshell, when there is a trauma or infection the symptoms of PSP can appear and increase, once the infection has gone the things start to revert back although not always completely, giving you a new 'baseline'
As Zerachiel says the answer is yes it is common to see very dramatic changes present when someone has an infection. Did the hospital find any raised temperature or fever? Have they kept your dad in hospital? Sometimes once the infection is stabilised they bounce back although your dad may not return to the way he was last week.
I agree with what others have said. Another thing to consider is a reaction to medication…consider whether he’s on any new meds? My husband started reacting like that, unable to move, as a medication reaction that only kicked in about a week after the offending meds? With him, it turned out to be medicines that use the CYP 3A4 pathway—even if they were medicines that didn’t bother him before!
I hope you get to see improvement in your dad soon!
HI, As you say there is no normal and many different experiences and situations. In our case it may not be quite as severe but my husband has had a few sudden bouts of zoning out where he lost the ability to walk, couldn't hold his own body weight, appeared not to see and couldn't respond. Fortunately they have been temporary incidents 2 different things appeared to be the catalyst - first few times it was when he had been out with visitors or whilst out. I think the excitement and activity was too much. After a good night's sleep he was much better but still tired and rested for a few days and was OK again. I have noticed as things progress and fatigue increases even short outings or appts can have a similar affect, so we try not to overdo things and rest is needed. The other instance was when he started taking Sinemet, he seemed to have a massive reaction to it and mobility, speech, sight, cognition and communication were affected. When he came off it things improved. I do thing also there is a confidence and fear element too where a person can close in on themselves. I do hope your dad improves.
I’m so sorry for your situation. This sounds rapid to me, but unfortunately, we experienced something somewhat similar with my father. The doctors remarked how shocked they were with the rapid progression he experienced. It is true that with every infection, particularly UTIs, it can be normal to experience confusion etc. But outside of this, it is also pretty normal for patients with dementia to experience something called hospital delirium. They get more and more confused being in the hospital. And, unfortunately, may progress with each admission, without returning to baseline. From the symptoms you describe, did doctors rule out stroke or TIA? Did they rule out infection?
Sorry to hear about your dad. My husband has had in the last 6 months, 3 episodes of suddenly zoning out, loosing all hand / eye coordination and the ability to communicate and mobilise. The first time he was totally unresponsive for 45 minutes. The neurologist advised it was episodes of active hypo delirium, however each time there was no signs of infection. What I have come to realise is that these events have followed a visit to family and 2 hospital appointments, as the same thing appears to happen, albeit with less severity if the doctor / nurse or family visit at home and he has to concentrate more during conversations etc. He also then suffers extreme fatigue for a few days. We are learning as a family that sensory overload is not good and sadly going out to visit family has had to be reduced, which is also what he now wants as he knows it’s just too much for him.
I back up everything already said. Mom was relatively stable.. until she wasn't. She got a raging, somehow undiagnosed UTI which, along with not getting enough liquids, turned into kidney failure. The symptoms she had turned her into a shell in the matter of days. She was on her feet, still eating ok and less than a week later, needed a feeding tube.
You mentioned your father had surgery for skin cancer last week. Did he receive a general anesthetic? There is evidence to support that this procedure can hasten PSP's progression.
I concur with daddyt that general aesthetic should be avoided at all. Twice my partner had GA and it had a profound effect on the progression. Why are they worried about skin cancer when the patient has PSP? My partner is currently in hospital with covid 19 and the effects of that infection are also very noticeable and severe. He is not the same person he was 7 days ago. I had not heard of hospital delirium so thanks for sharing that. I will try to get him home ASAP.
My father (who hasn't got PSP or dementia, "just" bowel cancer) had post-operative delirium after surgery. The combination of General Anaesthetic, hospital infections and trauma brought out a really complex set of symptoms. They had to put him under GA three or four times in 8 days. It took nearly 10 weeks before he recovered and could come home - during that time, the care home in Norway was closed down multiple times due to Corona virus (which he avoided) and norovirus (which he did get). The staff didn't seem to understand that he had been fit and well and completely independent before his operation. During the 10 weeks, he was described as uncooperative, lazy, rude and paranoid. He wasn't able to speak much and he wasn't able to do any of the rehabilitation exercises that had been planned for him. His sleep pattern was all over the place, he wouldn't eat because "they put green stuff in his food to make it taste bad" and "they refused to take him to dinner because they had changed the clocks to confuse him and tried to claim it was night time". We had very little hope of him recovering at all.
Because of all this, I found out about post-operative delirium - the doctors didn't volunteer this information. It was really scary to see such a massive change in such short time. He made a full recovery - eventually - and is still going strong.
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