Hi there, My mum is really struggling to b... - PSP Association

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Hi there, My mum is really struggling to ben her knees and sit down, She is unable to bend her knees and sit back. Has anyone else had this?

Radhi1 profile image
6 Replies

she is fairly immobile most of the time but she has been able to move from one room to another. Now taking her to the toilet is tricky as she is unable to bend her knees and sit back. Has anyone else had this?

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Radhi1 profile image
Radhi1
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6 Replies
Sarndeep profile image
Sarndeep

Hi, My granddad passed away this year and he also had problems with sitting and going to the toilet.

Do you mean that she cant sit down on the toilet unaided?, im assuming the when you say 'bend her knees', you are talking about her difficulty in actually extending/moving at the knee joint. Here are the things that I did to help with my Granddads mobility

1. Try to stretch him out as much as possible, I purchased a massage table and made him lie flat on it. i would then do a number of exercises with him to get him moving, i.e extending the leg, getting him to raise his leg etc. This seemed to help, and although in the later years he could not walk unaided, he was still able to stand with assistance and walk using a walker (he had PSP for 10 years before he passed!)

2. Get your Occupational Therapist to get you some pressure mattress's. This helped allot, we had a small one for his chair (which was also raised a little to help with the sitting and getting up) and one for this bed which helped allot with his sleep and comfort.

3. If you can afford it try and get a physio that specializes in patients with parkinson/stroke. I got one in for a session that really got my granddad moving, he gave him a number of exercises that helped with his mobility, my granddad did them daily for a while, but then he and I got lazy and stopped, but i can honestly say that they helped allot again with his mobility.

Im not a doctor, and I know allot of doctors allways give a bleak outlook with PSP, but i truly believe that you can at least slow down the mobility deterioration with the patient remaining as active as possible, I think patients get lazy and just end up sitting in a chair or lying in a bed all day, this is the worst thing they can do as it almost as if your forcing your muscles to forget how to move.

Radhi1 profile image
Radhi1

Hi Sarndeep, Thanks for your response, the points you make are really helpful.

hazelb profile image
hazelb

Hi...my husband Frank passed away last month. He was diagnosed with PSP April 2007. Even though it was difficult for him, we got him out of bed every day & until about a week before he died, he walked to his chair in the living room, using his walker & us for support. Then when he could no longer manage that, we wheeled him to his chair using the shower chair. We were determined he was not staying in bed!!!!! Unfortunately that day arrived but it was only 3 days then until he peacefully passed away. My message is....try to keep your Mum mobile as long as possible & give her a change of scene. Sorry I can't be much use but please take care & try to keep smiling even though it's very difficult at times. Love Hazel B xx

barbren profile image
barbren

My Mum has PSP and one of her symptoms is her inability to bend at the knees and at the waist, but only sometimes, toiletting is sometimes difficult but I quietly ask her to bend her knees and at the middle, over and over to remind her to bend, I try to support (not push) her head forwards so that it does not stretch backwards, and I place my foot in front of her feet to stop them from sliding away in front of her.

Having supports on the sides of the toilet is also helpful so that she can put her hands on them and lower herself onto the loo, in this respect the commode was easier for Mum to use, but there is a simple frame that goes around the toilet to give hand support, it is moveable so that others can lift it away to use the toilet normally.

As I say,the problem comes and goes, the trick is not to suggest it prior to using the toilet but to be ready to help if necessary. Hope some of this helps.

jillannf6 profile image
jillannf6

Hi Inhave problems sitting butt a raised toilet on a plinth really helps and grab rails 2

Lol Jill

-)

cabbagecottage profile image
cabbagecottage

do you ,if in the Uk . Do you know of care and repair . we have it Wales .

ask the OT if she can arrange grab rail for side of bed and toilet frames . Etc .

when my husband was still mobile I had grab rail all over the house . in fact I bought them and put them up myself .

barren you have reminded me of how I coped with John . Placing your feet in front of his to give them more leverage and stop them from slipping .

I discovered that it wasn't helpful to cord him by standing in front though when he was trying to get up and move . It like a brick wall for him . I stood along side and would give. A little push behind and count . when they freeze stop and count three and try again .

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