My husband is dignosed having PSP since March 2010 Dr is of the opinion that we have not noticed the changes earlier as he did not show his inability or he wasSTRONGwe have not noticed
But he is deteorating very fast He is unable to see,. swallow,walk read write and falls always I am care giver and I am fully exhausted
I notice very big changes that is he gets angry often and what is the reason an dwhat ever is told to him he just does the opposite.and he is very stubborn and what ever he tells it has to be done immediately.He has a very sharp memory,his personality has changed completely he does not want to use cane walker wheelchair etc
We live in Pune India
Is there any support group and can you please let me know the address and how can i come in contact with oher patients or care giver who has PSP
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LALITHA
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My husband is very much the same . If something is in his mind he will nag me until it's sorted .
I don't think he can help it. He also keeps checking which or when the next medication is due . Itseems to eat away at him . Of course like yourself it can get you down .
I try to change the subject sometimes . Fortunately my husband does realise what iis happening and is still very understanding . His memory is also still very sharp in fact I often ask him to remind me of something /
Lalitha, PSP is very difficult to deal with. My opinion is that the patient is so very use to doing things that they just can't get use to the fact that they are now limited. If you have been doing something for over 60 years it is difficult to "re-train" your abilities to do otherwise. I think it's that more than his trying to do the opposite of what you tell him. I also think that some personality changes happen when a person has to give up many things that were just "normal" before (swallowing, seeing correctly, speaking correctly, etc etc). I think that constantly reminding him he is limited and needs a walker or wheelchair will help over time. I also thing relating what has happened to others helps. I recently heard of a man with PSP who fell and had head trauma with headaches and dissyness afterwards. I told my wife and it seemed to have an impact on her realizing it could have been her in the hospital if she doesn't do the right things. Hope that helps and you find a support group in your area. If not, rely on this group for support. There are groups like this in Austrailia, UK, and USA so you can join all three for information and support.
Hi Lalitha - sorry to hear that you are having such troubles - but really I don't think your husband tries to be difficult. Do some reading on FTD -PSP can mimic many of these behaviors and you might be able to find some helpful hints on dealing with this. There are also OCD behaviors associtated with PSP. Outside of medical answers, it is very tough on PSP patients -especially men. My dad was a man's man, never needed anyone to care for him, very active - -let me tell you - he's never used duct tape to fix anything so I think it was really hard because PSP made him vulnerable and completely reliant on others for his care - -keep in mind that we still have maintain a sense of dignity and place in the family. The disease does not replace that fact that they are men - -and you know - - men need to be men - -it's quite a balancing act.
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My husband has been diagnosed with PSP aged 48
Every exhale is a moan.
Time I think is running out
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