freezing

[Grandmadippy]

hi,

Re the freezing , may l ask for tips on what people use for this, it has been suggested a red golf ball light on my frame which to be honest l have not tried yet, but am going to. A lazer light on a stroller was suggested but heard expensive, then l read a comment about the red ball light. Think got right.

My trials have been deep breaths calm down and restart. Counting , marching, left right , rocking side to side, singing etc all to no avail as cannot seem to lift feet. Brain does not seem to want to engage. I try going up and down stairs, marching on the spot swinging arms as advised by physiotherapist and now finding difficult to walk with stroller, half an hour is more like one to two hours. Obstacles, inclines, pavements, doorways , steps etc It really exhausts me and people are very kind and try to assist which makes my anxiety even worse, l do not expect miracles, but, any suggestions helpful thank you

I even got a T shirt printed with “wind me up and a key logo on the reverse”as a joke, to make me and other people smile

[Bergenser]

You seem to have tried almost everything - perhaps an audio queue (like a metronome) remains on the list?

I smiled to hear you had got a T-shirt made.

My husband had caps in orange and purple and a gillet made up with “I have PSP”. It made it a bit easier. He would often point to the head if I was annoying him a bit - just to remind me 😅

I wish I had a definite answer to your questions xx

[espanamujer]

here's what I do but YMMV.I recorded my own voice counting on my smartphone when I walk i listen to my OWN voice and step accordingly.

Also, I constructed my own walking device

it's a cane with a strip of cardboard attached to the bottom of the cane. The cardboard is at a 90 degree angle. I STEP over the strip of cardboard and it is my CUE.

[LuisRodicioRodicio]

Hi Grandmadippy!

These are our experiences and informatios about freezing:

Freezing in motion or not being able to release a grasp

The solution may be different for each patient and each situation. Again "trial and error" method.

First is to staying calm and then hold/hug the patient and singing, counting, dancing or chanting left to right can be effective to restart the movement. It can also work is to just stand there and hold / hug the patient or, if you can, have them sit back down and the episode can pass in a few moments.

daddyt (a PSP patient) provide his own solution: “When I have those instances of freezing, I'll distract myself usually by counting as well. The key is to never focus on the issue itself... it can work.”

Railfan indicates that: “If I try to clear my mind and can be distracted by something else, then my brain releases the Freeze rather quickly. Sometimes I can distract myself and other times my wife has to distract me”.

Freezing when the patient should be sitting or doesn't want to sit down on a chair or more importantly on the toilet..

Millidog makes this contribution:

"My patient freezes when should be sitting, 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. 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 the patient doesn't move until you do give them. Maybe to consider clear consistent verbal instructions is the better option."

Diggerandsam point out: "Have you considered a commode? The legs can be raised/lowered. I have psp myself but can no longer use the toilet so use commode. I also have a padded cushion as I found the seat hurt my coccyx"

Freezing up all over the body

Kelmisty contribution:

"She has been freezing intermittent left arm and leg for about 12 months now, her right-hand side is also starting to get effected.

She has been in extreme pain in her arm this last week and we are looking to up the pain relief but so far nothing has been suggested to loosen her limbs. Mum has a low dose morphine patch and paracetamol four times a day currently. But I believe the suggestion is to up the pain patch and use cocodamol - although that can cause constipation so will up her laxatives to help avoid that.

They want to avoid oral morphine as that will zone her out and the nursing home said it would be best to avoid that until the end as you still want Mum to be here if she can be.

I believe you can find clothes that have easier access for frozen limbs but I haven’t looked yet as we aren’t that stage yet.

I’ve read about Botox potentially but the nursing home said there is physio that has to be done to make it work which she has always refused to do."

SunriseLegend contribution:

"He had sessions with an NHS neuro-physiotherapist who gave us exercises for me to do with him. It might sound unlikely but they help with his stiffness in his arms. Using a soft toothbrush or just gently with my fingers I tickle the palm of his hand. This stimulates the nerves in the hand and help it relax. I then separate each of his fingers and thumb in turn, pushing down in the gap with my finger. Then I slightly stretch his thumb away from his fingers. Then I twist and turn his wrist left and right and back and forwards as much as I can. I then move his whole arm up and down; across his body and out to the side; straightened out and bent again - as much as I can. He has Botox and also cortisone injection in his shoulder for arthritis. These are all helping to keep the mobility in his arms to enable the carers to wash and dress him."

LARWLSN contribution:

"She has a frozen left side, her left arm, in particular, has been pretty much locked in a contracted state for two years. Physio and botox have helped us keep it possible to clean and dress her, as well as be able to put her in a wheelchair. To be clear, we realize there will be a point when this combination will have no effect, but as long as the physio people say it is worth doing, we will keep on."

Hug and luck.

Luis

[PineEater]

GrandmadippyHi. Please try this before you start moving: Just imagine how efficiently and comfortably you used to walk for a few moments! Hope that will be workable for you too.

The cue1 costs £795. Too expensive. The manufacturer seems to be taking pleasure in the misfortune and sufferings of the people suffering from FOG. That is socially unethical. The device should be given to all such sufferers without any cost because they need really need that if that works.

Best wishes

[Grandmadippy in reply to PineEater]

I have tried that too . I am ok when l get going it’s just when l stop. Yes the cue 1 is definitely too expensive especially when it depends how long you may use. Thank you for your imput appreciate