Hi all can I ask some advice from you wonderful people. My mum is a PSP warrior diagnosed 3 years ago (possibly had symptoms for 5 years) she is generally managing ok with a lot of dads support but recently she has developed a strange habit that she doesn't want to sit down on a chair or more importantly on the toilet (she has a frame for support around the toilet). She hovers like she is about to sit but then stays rigid in that position. Does anyone have any advice on this and how to get past this stage.
Thanks
Deb
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DebHep
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Hi, I'm so sorry your mum and dad are experiencing this. My husband does similar, he freezes when he should be sitting and i don't know why. I think it must be something to do with the slowing of cognitive processing, where it takes time for the person to process what they need to do and on occasion can forget what they were doing so remain half up / down, throw into the mix the apathy that comes with psp which won't help With my husband it happens sometimes but not always and can happen for a period of time then disapate fur a while. Best approach that worked for us was to is to try and remain calm, talk them down into seated position and keep gently repeating but don't be surprised when just when you think they are seated they get up again.. I've used many a swear word when this happens. I find having a rise recline chair helps as there is less distance to sit down and it may be worth trying a padded toilet seat which would make the seat higher...may help. I'm sure others will have experienced thus and can offer more advice too
Thanks Millidog good advice - I wonder also if it's too many things to think about pulling clothes down sitting down & emptying bladder lots steps to process at same time when your brain is saying toilet! I will look into padded seat as that's something we don't have. Thanks for the reply it has put my mind at rest it is PSP & not something else!
Actually your reply helped me too consider the multiple stages involved and i remembered we now have a very practiced step by step process - same every time and every step with verbal cues e.g. put you left hand here, right hand here ...and if verbal cues aren't given husband doesn't move until you do give them. Maybe consider clear consistent verbal instructions in your approach best wishes xx
DebHep HiSorry to learn of your mom's condition. Please let me know the following.
The first thing is can your mom speak? Can she tell why she doesn't sit on a chair and more importantly on the toilet seat as she earlier used to ? Ask her as well as observe yourself when she does sit on either, does she feel uncomfortable? If yes, how? Are there any grab bars around the toilet seat and where are these located? At the level of the seat or near the level of her head or above that on the wall? Does the toilet seat, in particular need to be raised? You have also talked of her staying rigid when she does sit in that position on the toilet seat. Please note that Axial rigidity is one of the hallmarks of PSP. Is she taking any medicine(S) for relief from rigidity? Knowing all these things is essential before thinking of including behavioral or cognitive changes to decide it all. Wishing you and your mom all the best.
Hi PineEater she has very limited speech now and when asked why she doesn't want to sit she doesn't know - (we have asked at the time & a little while after). She has a rail right around the toilet and a raised seat so shouldn't have an issue with sitting.
She doesn't have any rights medication as this is only recent & the only examples but I will ask her care team about those thank you.
Have you considered a commode? The legs can be raised/lowered. I have psp myself but can no longer use the toilet so use commodes both upstairs and down. I also have a padded cushion on each as I found the seat hurt my coccyx
Ruth does the same hovering over the loo seat. I make a joke of it and push her down onto the seat - but I can do that as I am her husband! It is more of a problem for the carers. Eventually she will sit down and she is happy once she is sat. I put it down to the general stiffness that comes with the disease and inability to bend.
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