Share this:

Progressive supranuclear palsy PSP

Posted by @marytea13 in Just Want to Talk, Mar 27, 2012

I have been diagnosed with PSP - it is a rare neuro condition that so far has no treatment & of course no cure. Its a movement disorder with falls mostly backwards. I have a walker & walking stick so havent had a fall since last March.
I would like to 'hear' from professionals + "friends' - please write to me I live in West Australia - very hot here so have just applied for eletricity allowance as we had the hottest summer on record & dont know what winter will bring! TIA

Tags: Movement Disorders


Posted by @kathryn04, Apr 11, 2012

I am curious to know your symptoms ...all of them. My husband is suspected of maybe having this but no one is sure yet. He has been suspected of either having this, FTLD or DLB....but he doens't have any falls although his gate is off and his cognitive abilities are awful. I just want to compare symptons... Good luck and god bless for I have read up on this PSP and I know it sucks! I will keep you in my prayers


Posted by @bdecloux, Apr 13, 2012

My mom was diagnosed with PSP about 10 months ago, but onset of symptoms, we believe, was at least 4 years ago. We tried for over a year and a half to discover what Mom has. Her symptoms include falling (like a statue--mostly backwards; she['s fallen 17 times), trouble with vision, (started with just not being able to read regular print; now, she has a lot of eye pain, extreme sensitivity to light, and cannot keep her eyes open without huge effort), weak, quiet voice (she hasn't been able to sing in 3 years--there's not enough air force to make the vocal chords work to sing), problems sleeping at night--she only sleeps during small sections of time throughout a 24-hour period, but feels very tired, and we've noticed personality changes. She seems to not have "common sense" and has no social inhibitions. She once put a cloth bag into my oven, which was intended to be used for baking potatoes in the microwave. She knows better, especially since she was a seamstress all of her life. Also, she had an outburst at a family Thanksgiving meal regarding people putting toppings on their pie. She would have never done either of those things in her "normal" life...So, we began to notice those types of things. Now, she has gotten a lot weaker, even in the past 4 months or so. She doesn't walk much any more and has no desire to go places. It's also very hard to take her places, since she can hardly get her legs to "cooperate". After Mom's diagnosis, a doctor advised that she go to a health care facility, since my sister and I had been caring for her, but her symptoms were to the point that we did not have the expertise to care for her. Another symptom is difficulty swallowing and also choking. She has gotten to the point that she is choking, and has a staff with her every time she eats. Aspiration of food is a problem with this disease, and it is beginning to happen with Mom.
Hopefully, this is some help to those of you who read it. It is a sad thing, since Mom can still think mostly clearly; it's like her body is closing in on her. God bless you who have to deal with it.


Posted by @jimandsharynp, Apr 16, 2012

My heart goes out to you. My wife was just recently diagnosed with PSP after diagnosis of Parkinson's for some time. I figure we are about three years into this thing. I'm not looking forward to the road ahead but your posting has given me faith that we can make it through whatever is ahead. Wife's started with falls (mostly backwards) and huge balance problems. Having dry eye issues now but no major eye problems. Swallowing is a slight problem but not real bad yet. I know what you are going through with the mental capability as my wife's mind is just fine. Speach is soft and handwriting is small. Thanks again for the information!!


Posted by @jimandsharynp, Apr 16, 2012

I'm in the USA but am interested in what the prognosis (length of PSP, duration of PSP) given to you in Austraila. They say five to ten years here in the USA, at least from what I've heard and read.

Please login or become a member to post a comment.