my husband often tells me that the TV Picture has disappeared . Then he says it has come back in . it hasn't !
his eyes are open at the time . his glance is downwards a lot so could be this other than that maybe the message not going through .
has anyone els come across this problem .
Yes, my guy has begun to say that he is blind, then he's not. He actually said once recently that it seems to him that his eyes are seeing, but that the delay in his brain in processing the information is giving him moments of blindness. That's the psp problem exactly, but his knowing that it is happening this way isn't helping him deal with it, and I don't know how to help or comfort him. I'd be grateful for any advice or shared experience. This is a rough time.
Love and Peace to all, Easterncedar
HI EASTERN CEDAR AND MR C MY ADVICE AINT WORTH A CARROT BUT GET HIM ON THAT BIKE PRETTY SOON MATE AND I WILL HAVE TO AS WELL I THINK CAUSE MY OLD EYES ARE CLOSING AS WELL MATE I HATE TO BE A COPYCAT BUT THERE YOU GO TAKE CARE BOTH OF YOU
PETER JONES QUEENSLAND AUSTRALIA THE ONLY PSP BLOKE WITH BLEEPERS =ON HES BIKE SEEN YER MATES
It's very good advice, Mr. Jones, thanks! I appreciate the backup, coz that's just what I have been telling him. I think maybe he'll listen to you! He has been getting some good attention from a new physical therapist lately, and I hope his energy level might pick up a bit. It's so hard for him to get around outside now with snow over everything. I say we have to keep strong until spring, when we can go out walking together again. I'll be sure to pass on your message right away.
I hope it's not too hot where you are. I'd rather have the snow, even though we've got about 3 feet of it, except where it's drifted or piled higher, and the entrance to my driveway is just a narrow strait about as wide as the car now between snow mountains. It's all very pretty!
Love and peace, Easterncedar
easterncedar well mate I think that mr c is playing up a bit dont you I will back you up mate if you say on your bike im sure he will be on it in a flash \\ I just seem to be falling over quite a lot I had two yesterday and the day before and so far 1 today just when I thought I was stopping after last years number of all totaled up 97 I keep a tally for the neuro bloke it gives him a good laugh but not as much as he gives me with hes pencil in front of my eyes\\\\\\and can you see the pencil now coming into view now I have noticed that people once they start to talk to you talk back to you as if you are an Idiot or you are mentally deranged thats when they have looked in your eyes of course and see a bit of a distant stare there which i wish I could get rid of \\\I try massaging my face not for wrinkles but I hope it gets rid of that far away look that you get \\not you but me
well matey we are expecting a cyclone tomorrow morning so have got my battery radio and torch and enough food for a few days so I can tell you its not hot here I think it was about 28 today nearly as cool as yours matey with all that snow YUK WELL MATE HAPPY SHOVELLING mr c on your bike mate
and that's meant in the nicest possible way matey
because there is another meaning for that saying
but for now I will say see yer mr and mrs c take care best wishes peter jones queensland Australia psp bloke and bike rider
I was wondering of one of these cyclones they are telling us about might be in your neighborhood, Mr. J! Sounds like you are well prepared. I trust you've got enough plonk to get you through, or whatever you favor. It's hot cocoa for us these days! I better get shoveling if I'm going to get the car out this morning. Thanks for the encouragement. Good luck with your storm. Love and peace, Easterncedar
I keep asking if they r sure he has Parkinson it something like pap they tell me no !! Do you see things that are not really there it's s lot like Charles bonnet syndrome my husband knows it's not real once I tell him
Yes. Once one year ago. He had been using the computer and said everything went black for just less than a minute. I figured it was just some sort of eye strain. PSP impacts the optic nerves (right?), so I guess that is not surprising. Every once in a while he will get some sort of odd movement once -- maybe jerking, maybe a slight tremor, drooling, and then it goes away. The only constant is double vision. Wish I could be of more help. But I agree with Peter Jones, exercise is important.
Hi Christine
"Neither optic nerve atrophy nor retinal degeneration are features of PSP" - official textbook quote. Most eye problems relate to other nerves that control eye movements and saccades etc.
T.
Oh yes! Everything about my husbands vision is extremely strange....I don't even know where to begin. It never feels like he can see and this has gotten continually worse. When I look at him he looks like he is blind..he cannot track objects, but also doesn't know what he is supposed to be looking at, doesn't know where it is, doesn't know what it is. The TV is completely beyond him. He couldn't follow what was happening and I don't believe he "saw" the picture. But his seeing was so connected to his understanding of what he was looking at that it was hard to know where the breakdown of vision was happening. This has gotten worse and worse. It also involves attention....things come and go, and to add to that my husband has very very poor short term memory so from moment to moment he looses what is going on.
Jill
Costa RIca
my husband will often say .I am in a mess here long before he was diagnosed he would ask me if I would clear up around him I thought he was being nuisance !! At the time . of course now I understand how he was feeing even then .I have to make sure he hasn't too many things in front of him , make the area in front of him without it being toooo bright . not easy !
he cannot find things . He will reach out for something and completely miss
Since PSP is NOT a one-size-fits-all disease the range of symptoms/issues can vary greatly from patient to patient. My dear wife did not experience the eye issues that other PSP patients have. Her eyes watered a lot due to the blink rate being lower than normal and she had the usual up and down vision issues but other than that her eyes were not closed or always open etc. Jimbo
is he also having trouble with finding things . By that I mean , I will ask him to take a tissue off me or hold my hand and he just puts his hand out into space nowhere near misses it completely . Special awareness
Emergency hospital visit
Hallucinations/delusions?
A week of WILD DREAMS!
Distress and agitation
