My dad is recently diagnosed of PSP and like many of what is described here, we now realize he must have had this for a while now. His slowing down happened many years back. Thinking of it now, it was a sin on our part to have related his slowness to laziness and forgetfulness to lack to attention. As a family we are trying to settle down with the reality. It is not very positive to read the details here, but it certainly gives a lot of perspective. My virtual hug to all of you there suffering this directly or through your loved ones. thanks to all who contribute to this forum.
Around a month back, he fell down and broke his hip bones. He was at least handling his toilet routines + a small evening walk in the local until then. All the specialists agreed that a surgery (hip ball replacement) would be the best. His post surgery POCD (post operation cognitive dysfunction) was worst though was a local anesthesia and went on for about 5 days. once we got past this stage, we are unable to mobilize him at all for the past one month. Things appear to progress quite a bit - there are days when he is cheerful & many days when he isn't. He now has swallowing issues (especially with liquids more than finely ground solids), unable to keep his head straight, no self-initiated movements on the left with the right hand being the only one that moves around a bit. His speech has got blurred & low. Cannot sit at all and when forced to, starts falling to his left. Other than the slowness & falls, he did not have the above symptoms before his hip surgery.
He appears to have pain all over, and likes leg/hand massages. He can recognize people and can hear better than before.
1) Do any of you think we could have stayed without surgery and that would have at least left him the way he was? But yes, he did fall and was unable to walk due to the pain at that point.
2) We are trying our luck with physiotherapy. Is it likely to bring him back to his pre-fall state? we could continue this further, but he hates the physio time and we can see the pain he undergoes in his eyes
I do not see many doctors around, unless they are specialists, who appear to be well aware of this issue. Though Parkinson disease is common around, I do have any single distantly known person who has had this in the past. So any advice here would be helpful.
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vidvv
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You and your dad are in an unenviable situation. No. I don't think you could have done anything different. They used local anesthetics. Think there is documentation that general anesthetics cause confusion. Then so can an infection. Have seen both occur. Things may improve. Has your dad been given meds for joint stiffness which may be result of PSP/reduced activity? That may help his pain. Physio can be painful from my experience, but maybe it needs to be a little more gently administered for his condition, not just hip surgery!
Hope things improve. Don't beat yourself up about what might have been. Hard as it is, accept what is, and make the best of what is the new normal!
Thank you Jen. I do not think the Physio understands his condition all that well. Based on the rigidity that she sees in him, she appears to think it is possible to bring him back. She also agrees that we cannot see results any soon. My dad starts howling when she starts the passive physio on him. We are wondering if we are torturing him for no use at this point
Don't know but she could be. I have family with Chronic Regional Pain syndrome and I know they cannot endure the intensive deep tissue massage that I can. My physio understood this when I spoke about it with him. Maybe she needs to read/research a bit more into the condition. There may be others on this site too who have a better understanding.
I know my husband had back problems and it took him a while before he found a physio who understood his problems, and gave him relief.
Keep trying. Your husband has his own built-in torture! He may need different treatment that is more gentle.
You couldn't have done anything else. He would have been in lots of pain without the operation. I was always scared my husband would fall. He did eventually and broke the 2 bones in his right arm. He was never well after that.
The way you describe your Dad could be my husband. The problems with swallowing liquids and leaning towards one side. Saying he couldn't sit eventually.
Don't beat yourself up about not recognising the signs. Bet you had never heard of PSP before? I have yet to meet anyone who knows what it is and there are other similar conditions where the symptoms are very similar. Nobody knows about them either!
I did exactly the same with my husband. Asking him to do things which were obviously too much for him with hindsight. I didn't know it at the time though.
My husband never had Physio. Maybe it was for his own good? I was cross to be honest as the Physio would just walk him around until he couldn't do that anymore but I think maybe she did it for a reason now.
Just make him comfortable and love him! He is still the same person inside. He will know when you tell him you love him or cuddle him.
By the way even after an infection it can mean a change will occur. They just go downhill with every little thing. Or what would be a little thing to most. Sorry nobody replied to you quicker.
We have all been through this though and there are a lot of very good people on here who will help. I think of them as my friends now.
thank you Marie. Ofcourse i do know many of you in this forum are awesome & helpful and thats the reason I am here.
It appears its your opinion that no matter physio or what, the condition is expected to progress. quite disheartening but i know its true. Me and my siblings wanted to give this few weeks of time - giving up isn't easy.
It is extremely hard to see dad suffer. Not seen him smile for the past 3 days. He used to be a joke writer for magazines and looks for humor everywhere. Look where he is now.
If I may know, how is your hubby doing now - sorry if its an inappropriate question.
That's alright. I think it is probably a happy release for him. I miss him terribly though. We were married a long time and it's very difficult to move on. It's one step forward and one back unfortunately.
I am sad to say the P in PSP means progressive. Had your Dad not fallen he might still be going to the local but not for that much longer I suspect. Sad that his little enjoyment has been snatched away from him. Another of the symptoms is ataphy and in my husband's case depression. I have to say I think it would be very hard not to be depressed under such circumstances?
Make however long he has left days of love, and happiness too if that's at all possible. I am sure if you have children they will make him smile. He is in a bad place now as he realises what he has lost. Very difficult for him. When he comes to terms with it...if he does, then try to bring happiness into his life. Do it even if he changes beyond recognition as he may do.
I read another post today that people's intellect is the last thing to go. My husband was very with it until he became unconscious the day before he died. Even though he really struggled to speak! So remember he is still there your beloved Dad.
Sorry again. i totally understand how you would miss him now, but still think its ok for him to go than suffer with this terrible monster.
Depression must be there. there is hardly any communication that he does unless asked. If we keep continuing conversations, he asks us to stop. My kid does a terrific job of keeping him engaged when others in the household can't, but he keeps sleeping most of the time.. or at times fully awake at night. He has breathing difficulties, more last night. its hard to come to terms with it.
Same thing happened with my dad. We didn't k ow he had anything until he was never the same after his fall and hip surgery. Took a month to get diagnosis. What else can you do though. The hip needs to be taken care of too. My dad never walked again. Just a little with a walker and a wheelchair right behind him. Never took care of himself and progressively got worse. I don't think therapist really get what PSP does. Some days dad did his therapy willingly and others he just refused and said he couldn't. Hugs and prayers to you.
thank you Lucy602. Same case with dad. Today was a reasonably good day where he tried supporting physiotherapist's requests (though passive only). Yesterday was very bad. I can see the pain in his eyes. But the physio thinks his muscles are better and more flexible than where she started with; and legs better than hands. His trunk is extremely rigid though.
sorry about your dad. and it is amazing some of you are still part of this support group. and most often this turns out to be an emotion-support group rather than a medical support group coz of the terribleness in the condition we are dealing with. One hardly can help the sufferer.
My dad also received his diagnosis after a broken hip. He was really out of mind for about 5 days after the surgery. He didn't even realize he was being taken to rehab. Couldn't grasp anything that was going on. He eventually came out of it. But to me i don't think it really effected his decline. If he hadn't had psp he wouldn't have fell and if he fall and didn't have psp he would probably had been back to full mobility in a month. In that case yes I think physical therapy would have helped. It just doesn't do much to help slow psp. If he hates it I would just forget about it. It really just depressed my dad more to see how he was getting worse. I will say the only thing that improved his walking was getting off sinemet. I think he thought he might be able to do things again when it was a little better. Then he was so depressed when he saw he wouldn't continue to improve. One of his doctors told him he should try really hard in physio and he might be able to golf again. It was almost cruel to give him this hope. Especially since he knew nothing of psp.
thank you fothergilla. It must have been hard for you to find your dad wanting to improve but couldn't. And many of my dad's symptoms and yours appear to be common. Was he very normal before his fall/fracture? In my dad's case, he was slowing down quite a bit and had few low-impact fall episodes prior to the fracture.
Dad is not on any meds for psp. The sinemets and the xxxOPAs that he was administered earlier just puts him to deep sleep. He never wakes up thru the day. And neuro then advised against them as they were not expected to improve him. Agree the physical therapy that he hates isn't going to make him better either. But that appears to be the only constructive action that we as a family are attempting on him - so like i said before giving up takes time. Depression doesn't seem to have set in yet, but he is just very angry.
Moving him from bed to wheelchair and back is the weights/resistance that i get for myself in a day. I try to break for a quick 20 mins cardio in addition.
Right. It can be a work out. I bought a lifting belt and also I would recommend the best most padded gait belt not the one you get from the hospital. My dad did have several falls in a two year span before the big fall which happened right after he got referred to the specialist in motor disorders. His symptoms started with stumbling feet. After about a year of that he thought he pretty much had Parkinson's which was confirmed by the neuro. The odd think was dopamine helped him just a bit at low levels and completely wrecked him at high levels. I think he must have had psp-p.
The only thing I thought he could have gotten out of the physical therapy was methods for lifting and transferring that made it easier and safer. We ended up buying a sit to stand since he became a 2 person assist. He ended up hating it and we had to hire two caregivers for periods of time like at night and in the afternoon when he was most restless and wanting to stand. Pivot disks can be helpful and lots of support bars. But I would really look into a high end gait belt if you don't have one. A lift chair became an absolute necessity. If it broke, which it did 3 times it was a panic situation. Good luck.
Many thanks. I had to lookup what a gait belt is, and in fact all of the medical equipment that you have mentioned about. Dad's whole body is rigid, other than the right hand. Can't imagine him using any of them? there is an expectation that the patient will hold his upper OR lower body tight during the transfers - dad wouldn't do any of these. I am checking out the videos to see how they can all be used. I also wonder about the availability of these in my country. Pivot disc would be very helpful if dad wouldn't push his entire weight on us. He is a 2 person assist now in your terminology.
Sorry to hear that. My dad was very close to that It can work I think if he can bear weight. If he can't then I know people use a hoyer lift. . Where are you? I would have sent you mine but I already donated it. I would think you could get it shipped anywhere. Again good luck.
I live in India. Thank you for thinking about shipping it. like i said, not sure if any of these would be useful to add. He slips to the right or left even when made to sit on the wheelchair.
PSP is such a rarity in India and healthcare support options are unheard of here. I am learning quite a lot in these forums and people like you.
Most of you indicate the patient's head falling forward. With my dad, it falls backwards. And he fears falling down asking us to keep holding his head.
Marie - i was just going to write about it. thanks for checking.
Urine culture underway, waiting for results tomorrow. I do see something white in the catheter tube and urine bag. His tummy is bloated at times, but ok at times. Bowel movement normal. Temp gone with a paracetemol yesterday, but symptoms remain.
Hi vidvv, this is exactly what happened to mum, she had a fall 5 years ago and surgery for a new hip, her mobility was not good before and the drs said it was because of her arthritis. She had very intense physio after her operation which was very painful for mum but she was determined to walk again. After about 6 months they managed to get mum to be able to walk a few steps but never on her own we had to hold her hands. She was then diagnosed with this horrid psp and lost the few steps she could do. That upset mum all the hard work with the physio and she lost her mobility anyway xxx
Thank you for the response richmond1. This is one place where i dont find it amusing to see another person in the same state as i do. Its sad to know your mum and you have to be going through this terrible thing for the past 4 years. Hugs !
UTI test came out positive as expected and it doesn't look like dad is comfortable emptying his bladder based on the measurement in the urine bag. blood sample is taken now to check for any kidney issues. Temperature in the place i live is very high - and thats likely to be a reason for the low urine too. The immediate issue i have is to get a GP who has a fair understanding of PSP (especially on what not to do with the patient) and who could home-visit. We have nursing care closeby but a doctor is to be found. taking every hour at a time.
New one today - blood tests indicate dad's sodium and potassium levels are low; and a GP is requested to make a home visit to recommend plan of actions. Any of you know about this? (I read in other's history posts that GPs refused to make home visits - where I live, that is never an issue, but i am very sure any GP visiting wouldn't be aware of PSP and a good one may google enough before he/she came home)
Another question on feeding - Dad was on ryle tube feeding after his hip surgery then it was taken out. He is now able to have small quantities of pureed food and water - but ONLY in lying-down position. If his is raised a bit or he made to sit, he chokes causing coughs. Is it at this point that we need to evaluate PEG options or can we continue to feed the pureed food in slightly raised head position?
My Mom also had low sodium & potassium. It's amazing how much it affected her. Her Doctor recommended just 3 cups of liquids per day. We gave her Gatorade. She's now up to 5 cups of liquids a day and her tests come back normal.
She takes medications 4 times a day with the last set of pills to be taken at bedtime. The bedtime pills are taken with applesauce. The applesauce method was helpful when she could only have 3 cups of liquids a day. We kept that habit and she doesn't get up to use the bathroom till morning.
oh wow, how did i miss this from 2 days back? sorry.
Are you restricting fluids on your mom? i dont get that? We have not restricted dad from fluids, in fact the summer here demands he takes more fluids. Dad is on catheter as of now and bathroom use hasn't seen a problem. applesauce method is a good idea. Her sod/potassium levels are ok now?
I didn't know there was such a thing as low sodium. I grew up hearing, "watch your sodium intake". It changed her personality. Mom was even "seeing" our Dad who passed away in 2001.
Her Doctor had us restrict her fluid intake. I'm guessing that Mom drank so much water throughout the day that she flushed the sodium out of her system.
She's fine now. Levels are back to normal. No more hallucinations and personality changes.
Medicines + IV saline happening to bring up dad's sod/potassium levels. He is weak & more agitated after 2 bottles of saline and has picked up mild fever. hopefully 2 more will work better
Mums symptoms got much worst after a knee replacement. I now have suspicions that the anaesthetics that mums had over the years (hip / knee & 5 shoulder repkacements) has a strong relationship to her decline. She now says she woke up after a very long shoulder replacement surgery (6 years ago now) feeling very dizzy & that it never went. She was very weird post surgery after a knee replacement 4 years ago & was very confused about her rehab plan etc.
Sorry not to have better news for you
I am very nervous now about general anaesthetics! X
Hi - no she's has rheumatoid arthritis for years sadly. She declining....walking very badly with a frame & someone behind her supporting her. Can't stand or sit without help. Can't shower / dress etc....slowly but surely fading sadly ....she's only just 70 X
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