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.