Freezing

[792Kumulani]

My patient often "freezes" during the toileting process. She will be standing and I will have the chair behind her and ask her to "sit" and she will freeze before leaning heavily to her left. In this position she would likely fall onto the porcelain toilet. We find ourselves yelling "SIT" many times and still no response. Does this happen with anyone else?

[doglington]

Yes !

Almost all of us experienced this. Lots of previous complaints about our loved ones breaking toilet cisterns etc. Mine did.

I don't think anyone found a solution apart from whatever works to get them going again. I don't expect I helped with my increasingly desperate pleas but we are human !

Good luck.

Jean x

[Hidden]

Oh, yes. Larry will move just so much then stop. I try to rock him to get him going again. Sometimes it works. I never know when a freeze will happen.

[D0ttieL0ttie]

Hi

This is a common feature of PSP and not the fault of the individual.

I got a wheeler commode, took the bowl out and brakes on, commode in a free space, not near a wall or obstruction, then one person is at the front of the person stabilizing them, then I go behind the commode and gently put my arms around my hubby's waist and gently bend him into the commode. Then wheel the commode over the loo!

Sadly there does not appear to be any other solution.

When Geoff went into a nursing home the staff used to think shouting would make the person bend, I think its a natural reaction, but not a solution in this case.

Take care

Pam

[D0ttieL0ttie]

Pam again, added to the above you need a rotator also known as a mo-riser for the person you are toileting. In the UK the district nurse or occupational health nurse will organise those items from the NHS

[HilsandR]

As the other responses have already said, freezing is a symptom of PSP as is the leaning. Yelling will get no response and is more likely to confuse the lady in question as processing information is also a symptom in PSP - she is most likely not understanding what you are expecting from her. This was my experience with my husband. DottieLottie has provided some good advice so hopefully that will make life easier not only for you but also your patient. These illnesses are a learning process for the carer and this site is invaluable for good advice. As challenging as it is caring for someone with PSP none of what is thrown at us is the fault of the sufferer, even though it may appear that they are being difficult - the death of neurons in the brain takes away their ability to function bit by bit. It's a cruel illness. Hils.

[honjen43]

None of the freezing is the patients fault! It is part of the Parkinson's related diseases, just as with Parkinson's

The Parkinson's movement suggest music and dancing for unfreezing, also marching to a slow beat - one and forward and two and forward. All said quietly. It helped my husband for a while and dancing was always very acceptable.

I did plenty of shouting in my caring time, but it never helped the situation! S/he needs a quiet, gentle reminder of how to move.

Adding music to the bathroom scene might lighten the mood for all of you and may prove helpful!

If you are new to caring for this disease I suggest you read as much as you can find out. It is complicated, not well-known - except here!- and produces many strange reactions that seem like the patient being difficult. In fact, it is PSP or similar taking over and the patient has no way of controlling himself.

Hope this helps.

Hugs

Jen xxx

[Marie_14]

My husband used to freeze. So I said right, left, right, left, and he used to move again. The carers were amazed as they didn't know it would help. In the bathroom I too used a commode which could be wheeled into the bathroom and over the toilet. It worked well.

Good luck.

Marie x

[aliciamq in reply to Marie_14]

Patient coaxing - getting my huz to stand up! Feet flat! Then a - Now you're ready- set- and count 1,2,3, etc... seems to work the best and it's been a good 2 years .

[AnneandChris]

Hello there

This is a common symptom of PSP. Our physio recommended asking the patient to look up, this breaks the cycle and then it seems possible to move where needed. Another tip is to tap the side worst affected, this again seems to work.

Hope this helps

Anne

[Birdman34265]

Yes my Kathy freezes when eating and leans to the left or right when sitting ,i fear one day she will stop eating ,our last hope is amitriptyline

10 to 20mg a day since i increased it to 20mg her eating is a lot better

Hope this helps . Peter and Kathy xx

[Heady]

Hi, I agree with everyone else, it is a symptom of PSP. Try asking it in another way, instead of "sit" "bend your legs" anything that will get the same result. Also as Anne has said, get the patient to look up.

Also, I found doing some practise, when it's not needed, helps. You can then at least spend some time finding out what does work.

Other than that, make sure the cleaning stuff is close by. Must be the biggest outlay we all spend during this journey!

Lots of love

Anne

[Tttp]

Hi unfortunately this is one of the many psp symptoms some have and some don’t everyone is so different my brother had it at one time but he is in his 9th year now, this is such a dreaded disease, it’s like something new everyday, good thing to do is go on the web to Mayo Clinic PSP, and it tells you everything you need to know concerning psp, they really don’t stage psp, butbwhat to look for as it progresses, some a few symptoms and others have it all.

[Dance1955]

Yes my husband freezes all the time in the toilet and during transfers

I loved to get him in the pools but he’s so awkward and when people offer to help he freezes more so I stopped taking him just need a sign “please don’t help “ I know they mean well but honestly he leans and pulls on me more making it impossible and really unpleasant I just have to take regular breaks which is really heartbreaking cos I just want him with me but he’s not the same person but I know he’s in there somewhere

Hang in Hugs to you x

[Boyce3600]

i want to know how the diagnosis of PSP was made, please. God Bless

[MartyBo]

I have had "freezing" episodes also. When walking . . My feet suddenly freeze and I can't move. I've also experienced this with not being able to move my arm. I have CBD

[easterncedar]

All the time. No yelling will help. It's utterly beyond the patient's ability to respond. I know because I did more than my share of panicked yelling and cleaning up after. Three toilets broken when I wasn't right there to stop the fall. Toward the end I would stand behind him outside the bathroom while he stood holding a bar and I would "play catch." It's rather amazing the things you get used to.