Subdural bleed

[Charliesyoungest]

On Thursday 6/5 my dad took a hard fall at the nursing home. By Sunday 6/8 we were transferring him due to a positive CT showing subdural bleed. He was lethargic and declining, seemed to be showing increasing PSP signs. During his hospitalization he was started on steroids to absorb the bleed, he made drastic improvements and by the time we were discharged he was talking in near full sentences, feeding himself, laughing and even asking a few questions! This short time was such a blessing as we had not heard him talk like this or show such attentive facial expressions in such a long time. Has anyone else experienced anything like this? I realize the steroids are absorbing the bleed, but obviously they steroids also relieved pressure elsewhere and allowed him to speak again! We started him on turmeric in hopes of keeping pressure/inflammation down to the area. Any responses are appreciated! Thank u !

[Heady]

Wow, you are the first person that I have heard mention steroids. S was given an injection for gout a few months ago, the improvement in him within a couple of hours was quite noticeable. His movement was much better, even his physio noticed it. We asked the doctor what he been given and steroid was in the injection. We were on holiday in South Africa at the time. When we got home, went to the doctors, they all laughed! But did get the GP finally to prescribe a small dose of steroids. Unfortunately, don't think they have done much. His movement is still a lot better than it was, I think the brief relief that he got, enabled the physio to work with S to help get rid of a lot of the stiffness and the pills he has been on, have just kept him on an even keel! Been slowly taking off them now. You can't stay on them! So we will have to see how he goes.

Lots of love

Heady

[Charliesyoungest in reply to Heady]

Heady, my dad was back in the hospital again this past weekend for a UTI and pneumonia, the neuro doc saw him again as they repeated the CT in case bleed was changing. The bleed was a bit different so they restarted the steroids, he is better again but not as good as the last time. I know he cannot stay on the steroids, but love that smile and the alertness he has while taking them! I am still hoping the turmeric will continue to release the pressure/swelling even after steroids have passed. His neuro doc also started him on keppra this past weekend in hopes of preventing seizures due to location of bleed....huge mistake! He has never had seizures but he felt it was a good move to get him on it. I questioned it at first, but then we (family) gave in and agreed. Had we (family) not of been at bed side we would of lost him due to deep sleep and inability to keep his own airway open. There is no antidote for keppra, so it was a long scary night as we sat and ensured airway was open and stimulated him randomly to ensure deep breaths were taken.

One more thing I must say Ina venting way...it drives me nuts how some doctors talk "over" my dad instead of "at him". I constantly repeat over and over " he understands you and gets everything you are saying, he just cannot always answer and if he does his response is delayed but begets what you are saying!" In other words, my dad is not an object lying in that bed- he's a person!

[Heady]

Who, someone who has PSP is a real person? Never!!! Mind you I expect you could say that about anyone with an illness. Especially one the doctors can't cure. Probably cant look them in the eye, because they know they have failed!

Lots of love

Heady

[jimandsharynp]

Charlesyoungest, Wonderful that your dad bounced back/upward. I have an analogy I use to describe PSP patients and caregivers. I call it the PSP "road". I found that the PSP "road" has many twists and bends, pot holes, bumps and mud. It also has hills and valleys. Because the "road" has twists and turns all patients aren't on the same "road", at least not at the same time. If you are on the same "road" you can be sure there will be a fork ahead and you will part ways with the other PSP person. Often a "hill" rises on one person's trip or perhaps their “road” is smooth while others are having bumps, slogging through the mud or maybe a "flat tire" (breakdowns). For this reason both patient and caregivers are on a unique trip. Yes some of the "scenery" and stops (symptoms) are the same or similar but the actual "road" my be very different. It's frustrating. You are on this "road" and don't know when the "dead end" will come much less what you may encounter along the way. You stop for fuel perhaps a potty break then back on the "road" again. There are no maps for the trip and that makes it terrible. You can call friends also traveling a PSP “road” but they are on a different road or ahead of you on the same "road". It might be raining, cold, and dreary where they are at the moment while you are motoring along on a smooth patch in sunshine. They may call back "Watch this turn coming up" and have advice to help "Stay to the right and watch the construction area". Hope some of this makes sense to someone on the "road". The journey for my Sharyn and I has reached a dead-end but we are familiar with the "road" and are here to help guide you and hopefully avoid some of the pot holes. We may even suggest a few restaurants (aids) to help you; the places we found helped us make it to the end.

Hugs to all, Jimbo