I can't seem to get a straight answer from anyone. Please, I need the four stages of PSP, defined, along with what to expect, behaviors, that would be out of the norm for my patient etc. I know it's a rare neurological disease, where there is no cure, but, I have & need to be up on the most current care I can give my patient. Will she start to experience pain, hallucinations, anxiety sleep more than usual & of late she gets winded easily, very frustrated with herself. Will she have less of an appetite (as in today & many days previously) Should I push fluids (water) for hydration? So, to recap, I need the four stages (of the PSP), what to expect when the four stages start. When each stage starts creeping in, I, Kathy, her Nurse, and caregiver want to keep her in her very cheerful demeanor & her giggles. I really hope I hear from someone in this community. I'm sure there are others on this Message Board, I would be ever so grateful.
Just shoot shoot me an e-mail. This PSP is new for us. Thank you so much for taking the time to read my e-mail.
Imagine for a moment the brain and a protein growth smothering it.
Where the protein grows the brain suffocates.
With PSP it is on top of the brain so the higher functions go first... That's the thought processing, balance, sight and later the ability to form words, and the swallow reflex.
So it is different for everyone. However the basic pattern is the same.
The only way to care for a person with PSP is to observe their new difficulties as they occur and to respond appropriately.
Hi Kathy ,there is no 4 stages,first signs are unbalanced, which is the back part of the brain, next is eye movement, up and down will cease only left and right movement ,later on eyes can be fixed upward, eyes will need drops for dry eye. swallowing can be a problem, coughing on thin liquid . Also speech can be affected. speech, eyes,swallowing is in central part of the brain, my wife Kathy has psp for 2 years, she is unbalanced, eyes look left and right only, speech is hard to understand, her brain function is reduced but can remember, swallowing on thin liquid can cough, coconut oil can help. we have had many tears together as i know psp will take her,swallowing is the danger as you can get pneumonia you know for me 70 years old, I have diabetes also a heart attack 2014 ,but i love my wife and i will look after her,you will have a roller coaster of emotion but you will carry on.All the best on your journey. Peter
Can be different for everyone, my first thing I noticed was when he was driving? His eyes were almost closed, just thought to take him to optician and finally to opthamolagist, as to where I was refereed to neurology, where it all began. Then the falls kept coming. Shakes ext. So as everyone on here different for everyone. We are all learning on here.x
Phone Jane Stein on the PSP hotline01327 322419 and they will send you their pathway to care package which is extremely useful . . You can also get a lot of information from their website .
My husband has PSP for 12 years now I can tell you it's a very long proses, all the doctors say it's been 12 years, there is pain a lot of frustration yes when he eats or tries to do something he used to be good at. The only he would hallucinate is when he gos into the hospital. He is getting worse now sleeping more and can't walk good also eats very little. I also notice he can't always make it to the bathroom. I hope this helped in some way. God bless marge
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