Stiff neck: Hi All. My sister has PSP and... - PSP Association

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Stiff neck


Hi All. My sister has PSP and the last few weeks i noticed that she keeps her head mostly to the one side..even if you talk to her. I sometimes have to turn her head towards me to speak to her. She also can barely walk with help from two people but oh boy, she still tries to get up on her own.When we help her to walk her head is always to the right side, which affects her balance even more. It is so dangerous to let her walk as one person is not able to do it alone. Seems like she is fighting to not lose her abillity to walk. I suggested a commode with wheels to help with the toilet issues but she refuses to use it.. so stubborn. She sit in her chair most of the day and sleeps a lot. Also a change in her personality... throws tantrums if she can't get what she wants. Poor carers... Everyday there is something that she says she doen't eat. She only wants chips and junk food. It is really not easy to keep her on a balanced diet as she wants to buy (and do) her own snacks when we go shopping.

It is so bad seeing her like this, but i sometimes wonder if it will be easier, and safer, when she realises that she cannot stand or walk on her own.

Does anyone out there also find that your loved one or patient wants everything that belongs to them, close at hand? My sister is always looking for something of hers... founded she keeps it close to her...

Such a awful disease! Nothing is the same, everthing changes at a daily basis!

Love to you all.

1 Reply

If you were losing your stuff, wouldn't you want it as close by as possible? Not meaning any disrespect to you, but She is at what I call the OCD stage the last ditch effort to show people how you feel (even if its' not really how you feel...and to care about stuff.) My husband did not get cranky but placement of stuff had to be where he wanted it......Put the stuff high up where she can see it. Her lack of gaze may account for some of her insecurity as to where here stuff is.....If you can't see it , it's gone....

Her temper tantrums will fade, just like her ocd about her stuff will...give it time , give her what she needs what the heck...when my husband was first diagnosed I stopped squawking at him about was his last enjoyment that he implemented (that and the perseveration of turning channels right in the middle of the good part....! :) ) make sure two people are with her when she walks and walk her.....My physical therapist said, "when B gets up, you get up" And after the ruination of 4 toilets 5 wall,s most of my furniture, and some bathtub tiles , I finally listened! Also , thoug I did not do this, a commode over the commode can be useful....she gets what she wants but the seat is higher and it has handles for her to sit and get up....If she eats junk food make her a protein shake with frenchfries.....chips with humus dip....sneak it on in there get creative...

My husband got a bad bed sore from sitting all day . So make sure you move her....even just standing up for a bit....When B could no longer go to the gym, I created exercises that used most of the large muscles...legs...arms ..core...back and he was seated alll the time....

Well good luck with it all I see you have been on this site for a while. Sorry if I havent' said hi before....

remember let them have or percieve that they are getting what they want!


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