G now has great difficulty in sitting down/standing up from the toilet seat and if not helped falls back on to the toilet bashing the toilet lid with her back so consequently has lots of bruises on her back, I'm worried that she is really going to hurt herself.
I now take her to the toilet and put by hand on her back as she sits down and try to hold her to stop her falling back, not that it works so I end up getting my hand crushed (fortunately my spinal problems means I don't feel it but am concerned she will end up breaking my bones).
Do any of you have similar problems, or is there some sort of padded cover I could put over the toilet lid? We have a raised "booster seat" for the toilet and also a frame that goes round the toilet, but as G seems not to be able to bend her knees to lower herself down they haven't helped.
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I took the lid off and padded the cystern so Brian didn't do to much damage to his back. He now uses a glide comode that slides over the toilet and as much as the back is padded i have still got a folded up towel secured to the back for extra padding. like g brian is unable to bend very much so its more a flop down on things and has been like that for ages. Hope this helps a bit. Janex
Thanks for your reply, with the glide commode does Brian sit in it then you put it in position or do you leave it over the toilet all the time. Can I ask what you padded the cistern with?
Flopping seems to have taken over from sitting, yet I know G can do it, I can't get my head around why she can't do it all the time.
I HAV E FLOPPED ON TO CHAIRS SICNE B4 I WAS DXD 2010 AND CANNOT CHANGE THIS NOW - IT DRIV ES MHYPARTNER MAD AND HE SAYS I A BREAKIGN ALL THE CHAIR S IN THE HOUEE INCLUDIGN MY 2 WHEELCHAIRS
BUT I CAN SITLL SIT ON THE TOILET AND SOMETIMES HTROW MYSELF ON OT THE COMMODE TOO
Blimey, I imagine you are covered in bruises, I keep telling G to sit down carefully and she replies "im trying" which usually means she's about to launch herself with as much power she muster back onto what ever she is going to sit on, we can have a laugh about it, but I do worry she'll break something like the chair, toilet, herself or me! I try to hold onto her as much as possible but having a poxy degenerating spine in my neck I have to be careful as I've been told I could be doing myself untold damage,miss bad enough having the constant pain and no feeling in my arms and hands so am terrified of the damage that could be done.
I used an old blanket to pad the cystern must admit it didn't look the best but it did at least save his back. The glide comode is like cross between a wheelchair and a comode. Brian is unable to walk now. So with the use of a rotunda i am able to stand him up and transfer him onto the comode and just wheel him into the bathroom (no pots to empty after) and then when he has used the toilet or been washed etc i then wheel him to where he needs to be.
Brian has flopped for years loads of broken springs etc. If i remember to tell him to bend his knees and hips it is less of of a flop. Not sure if its the message gets lost or just stiffness that is the cause. I am a firm beleaver now that it's a waste of time trying to figure out why he can do something one time and not the next It did cause friction so now i accept it for what it is. Janexx
THIS PSP IS STRANGE IS IT NTO - -I CANNOT MULTITASK ANY MROE AND HAVE OT CONCENTRATE ON MY WALKING WHEN I AM DOING A LITTLE WALKING AND CANNOTSPEAK OR LOO;K AT ANYTHING ELSDE
NOT MUCH WALKING THESE DAYS AS IA USE A WHEELCHAIR INSIDF AND OUT NWO TO PREVENT AS MAN ,FALLS ASI WAS HAVING
WHICH HAS WORKED TO SOME EXTENT
IT SI ALL MUCH WORSE WHEN IA M TIRED AT THE END FO THE DAY AND MY PARTNER REALISIES THAT NWO BUT DOE SNT ALWAYS RESPOND TO ME IN THE RIGHT FASHION
HE HAT ES IET WHEN I FALL AND DOES NT WANT TO ACKNOWLEDGE THAT IT IS A PERMANENT PROBELM FOR ME AS IS GOING TO THE TOILE T SO OFTEN
IT IS NOT A PR0BLEM FO FRME WHEN I AM AT HOEM BUT IT SI DIFFERENT WHEN WE R TRAVELLIGN SOMEHWERE(EVERY HORU ON T HE HOUR IS WHAT I TELL HIM)
AND MY SPEECH IS GETTIGN MUCH QUIETER./GARBLED AND MORE DIFFFIUCLT TO UDNERWST AND AND HE IS GETTIGN A LLITTLE DDEAF BTU WILL NOT ACKNOWLEDGE THAT (AT 71 GOIN ON 21
Hi M does not bend when getting on loo so have to bend her while holding head one hand forces her to bend at middle not dignified but works while she holds the rails and uses the cistern as a leverage point. I took toilet cover off and rolled up a couple of old bath towels wrapped in duck tape and stuck them to the cistern edge. Also use a glide commode for evening/night in bedroom, but as I had a high toilet fitted when remodelling bathroom into wet room, commode will not fit over toilet now. At same time also had disabled grab bars put each side of toilet as recommended by OT. Grab rails good for M holding her position while descending and rising also for me to steady her while cleaning her. Check with your OT for adaptations round toilet area very helpful.
I am sure that you could get a cover for the toilet back mate and maybe cut some foam rubber around the shape and bingo there;s a good remedy for a bruised back mate don't flop but we cant help it can we mate I still flop into a chair or when im going to get down somewhere that's psp for you matey anyway if you have an electric knife one that cuts up meat and stuff its ideal for shaping foam rubber mate put the foam rubber onto the back of the seat and draw around it with a marker pen then get your knife or an electric one and cut it out just undercut it a little when you have done this just try it for fitting etc if it fits ok then glue it on to the back of seat if you go to you local hardware ask him for some adhesive that will not eat in to foam when you have the glue just put it on the foam or back of seat and push into p;lace NO MORE BRUISED BACKS AND SPI]NAL TROUBLE GOOD LUCK WITH THAT MATE TAKE CARE SEE YER PETER JONES QUEENSLAND AUSTRALIA PSP SUFFERER BUT WAIT TIIL IT DRIES BEFORE YOU TRY IT OUT ;;;;;;;;;;;; PS YOU MIGHHT BE ABLE TOGET AN OFFCUT OF FOAM SOMEWHERE MATE ITS A THOUGHT ANTYWAY MAYBE WORTH A TRY
We put grab rails on the wall some a bit further away so that hubby could
Pull himself up. The toilet surround one never worked for us. He managed well until, like with all things PSP, it did not work anymore. Along comes plan B.... Take care. Maddy
We had six broken toilet seats in six months (aesthetics demanded I have wooden toilet seats fitted, when he crashed down he split them); then a broken toilet when big chunk of porcelain fell off after he flopped down; then used a commode fitted over toilet - broke leg on that one; now have cheapest padded seat and separate commode and it works for us. Seems further evidence of the fact that PSP is so different for each sufferer and thus demands different solutions from carers. My OT is 2000 miles away and we communicate by email and when she comes here on holiday. Hence I have had to be inventive. You'll find a way.
Good grief, if that happens to us it would push me over the edge, we rent this flat until we have sold our property abroad and can buy here in the UK, so I'm terrified of any damage that may be caused.
We were given a commode by mediquip so I can stand behind my husband and the back rest is padded.We had bought a commode but this Loaned one is really well thought out I don't mind the emptying as it is so much easier for him to use.
Thanks for your reply, unfortunately the ensuite and the bathroom are too small to have a commode in them unless we could fit one over the toilet, I'm also not sure a commode would sustain the flopping and we'd end up in a pickle.
It's a shame there isn't a book with the stages of PSP then at least I'd know where we were on the spectrum. G refuses to talk about it so I'm keeping all the information from her which is a bit of a strain. Fortunately our GP is fantastic and very supportive, as is the local hospice who have a counsellor for me to vent off to.
Thanks for your reply. I'm not sure the ensuite or bathroom are big enough for a separate commode unless we cud fit one over the toilet, but then I worry it wouldn't take the strain of the flopping and we could end up in a right mess
My husband was the same way. He has gone through 3 toilets actually- had to replace them. Physical Therapist showed him how to sit without falling or crushing etc.
* bend knees
*hands across chest- I think this is so they don't rely on walker and fall back
*Tilt head forward so that rump and head are balanced between knees
*lower rump to the area you want to sit.
When all is said and done one's position will look like bending forward at the knees to pick something up. We tried this many times on the couch so if he fell it wouldn't take something out haha! Good luck!
the patient is trying to establish balance between front and back which does not require extreme movements but a slight squat with head slightly forward....always second guessing myself....but it does work!
I'm on auto repeat at the moment, yesterday, last night, and this morning, constantly saying, "bend knees, head forward, squat" G looks at me as if I've turned into a robot!
have G pick something up in front of her so as to make it more natural.
CurePSP.com or something of that sort. It gives lots of information. not really any cures. suggestions and stages. Though I too would like a book. They say 1 in 250,000 ppl will get it. Not popular enough to be lucrative topic. In fact this was the physical therapists 1st psp patient. And B's neurologist was familiar with the disorder but not real experienced.
It's almost 10 am Have to take care of dad. Have a good day.
It is called a handling belt in the uk. It's like a padded belt that goes round the waist and has handles so we can hold person up or stabilise them. Also it helps to use when walking as you have got something to help hold them up with without having to actually hold parts of the person. Janexx
Didn't realise the flopping onto the toilet was so common! Mum also throws herself back into chairs/bed. It had been driving me nuts as her neck and shoulders already hurt and these actions surely make it worse, hadn't realised all PSP sufferers do it! I bought one of those old style padded toilet seats (you know the foamy plastic wipe down ones that are naff but were all the rage in the 80s) for a couple of quid from the pound shop/wilkinsons and attached it to the toilet backwards. Does that make sense?! We have raised commode thing over toilet too so I removed old toilet seat and put padded one instead. means doesn't hurt her back, but more aesthetically pleasing than towels and easy to clean!
Try the £4 padded seat too! Cheap and does the job! Hand rails either side of toilet necessary too. And it doesn't matter how many times I tell mum to call me when's she's done, I always hear her trying to get up! 😣 we have door bells dotted all around the house for assistance! I'm in the process of trying to get alarmed mats so when she gets out of bed at night or from her chair in the day it will warn me!
We've broken one toilet and knocked a couple loose and had to replace wax rings. I'm getting pretty good at repairs. Just when we think we have it figured out, with bars and head down etc. I stepped in the other room and he got up by himself (he forgets he shouldn't, at least I'd rather think that, than that he is stubborn.). Bang! Down he went! Nothing hurt this time. Jill
Sorry to hear that, 99% of the time G is now asking me to help her and then sometimes once I've got her on the toilet and say I'll be back in a minute, I return to see she has got up and pulled clothes up, it leaves me feeling very confused as to why she can do this at times. She had a flop yesterday but fortunately (?) my hand got trapped between her and the toilet lid, so another bruise to add to my collection 😪
Sure is frustrating! Amazing how so many of these stories follow the same lines. I feel like an engineer, figuring the best moves to maneuver him around the house. "Put this foot first," or "hold that door jam with that hand," and the ever popular "Look out for my feet!". Talk about bruises! I just think I'll be able to do this longer if I can keep him on his feet and legs strong. Plus, he feels better and not quite so disabled. However, he is losing some of the use of right leg and arm.
Keep on keeping' on! I think you are doing the right thing, stepping out of the room. Everyone can use a little privacy. Just look out for yourself in all this!
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