PSP and Blindness

[SWISS_MISS]

Has anyone heard of PSP causing blindness.

[abirke]

Not complete blindness or even any blindness perse. It's more of a lack of downward gaze. This means the patient cannot use eye muscles to look down. infact, my husband cannot look much side to side . However when the object is within HIS view, he is able to see it. the optometrist swore to me there was nothing wrong with B's eyes....he had good visula acuity......so go to an ophthalmologist, they have more, dare I say, 'Learnin'' There are many sites to help you, curepsp.org is the one I like

Goodluck

AVB

[vlh4444]

D's eyesight is now very bad and is probably the symptom which bothers him the most. He suffers from dry, watering, sore eyes, intermittent double vision, blurred vision, as well as the usual inability to move eyes upwards and sideways although, interestingly, downwards is not so bad! We have had many appointments with optician, ophthalmologist, orthoptist, eye hospital etc. and have tried a wide range of eye drops, gels, new glasses etc but nothing has made much difference and none of the experts have been able to give much helpful advice. He spends a lot of time with eyes closed but insists that this is not because they close involuntarily but just because he finds it uncomfortable to keep them open. They are worse in the evening and when tired. He finds it immensely frustrating that he cannot see things as he used to do.

Vicki

[Auntiemary in reply to vlh4444]

Our experience sounds identical. My husband now has a small cataract, but was told that having it operated on would make his double vision worse, so as long as he could see some, it was best to leave it alone.

[Kathleen52 in reply to vlh4444]

My husband John has exactly the same symptoms. Of all his problems his eyes are the worst. He puts drops in them all the time but it is of little benefit. Kathleen

[GillJan in reply to vlh4444]

Yes Malc's biggest problem is eyes. He gets blurred and sometimes double vision, he also sufferes from watery eyes - but I have found an optrex spray that helps with that one, he also bathes his eyes several times a day and it is keeping things on a level par at the moment. He wears both sunglasses and a baseball cap when we go out as this protects his eyes. In the evening he does close his eyes quite a bit too as he says it helps to rest them. He can no longer read books, not even large print and sometimes the telly is difficult for him too. What he hates most though is sometimes not being able to see what is on his dinnerplate properly.

[vlh4444 in reply to GillJan]

Yes all these things are very troublesome for D too. He is having trouble eating now - not so much with choking but more not being able to see his plate and great difficulty getting the food from the plate to his mouth. He has asked me to feed him now which I do when he is tired and we are alone but he is still able to make a good attempt at it when we are out if the texture of the food is suitable. He eats a good lunch at the Hospice when he goes to the day service there and says he enjoys it. It seems that they don't have to help him very much!

He cannot read even very large print as he is unable to scan and to see the left hand side of the page. TV is limited as he finds it impossible to follow a plot and cannot recognise who the characters are even in very familiar shows. He does listen to the radio a bit although he finds it hard to concentrate on that for more than a few minutes. The biggest problem with all this at the moment is that he still wants to do it. He is interested in everything and wants to be well informed so it is unbearably frustrating for him.

Vicki

[abirke in reply to GillJan]

Yes, the mirror we thought would really work but he has not caught on very well to the mirror image if you will of the food. I then placed two mirrors one reflecting image of the other which was reflecting image of food. This way it was not backward but he could see the actual movement......now his downward gaze is so bad that he cant even see that image anymore,. I am putting in for some prism glasses to see if that will help.

AVB

[cabbagecottage]

johnis a lot the same but his is a downward gaze . I put the TV on which has found watching more and more difficult trying to keep up with the talking . the he says the TV gone black and then he says he can see ,I gets flashing. These are the Cable boxes which are on the lowest part of the shelf Nr the floor .

Shen I speak he looks to the opposite direction and if I offer him something he reaches for it and misses it completely .

we to went back and fore the Optician and eye hospital , they first tested him for Glaucoma . which he hasn't got as far as we know now .

this was all before he was even diagnosed with Parkinson's .

They did say at the hospital that they couldn't understand why he couldn't scan easily or words to that effect .

he went for years to different proffesional about his shoulder pain and discomfort without any of these so called proffesionals picking up that it might be something !!!!!

it seems to be par for the course as far as Parkinsons and the like conditions .

[abirke in reply to cabbagecottage]

does he have parkinsons or psp. ? I did not know parkinsons had eye symptoms

AVb

[MaddyS]

I believe the problem is not the eye sight but the difficulty controlling the muscles in the eye. Strelly, do you have information on that?

We bought a lare TV screen hoping it would help. Sadly only for about 3 weeks. It was worth the try.

Maddy

[abirke in reply to MaddyS]

whats a lare screen?

We mounted the screen about 5.5 feet or 1.5 m off the floor,. Seems to help plus screen is 1m or 39" wide!...I know the size helps me I can't read anything small anymore haha.

[MaddyS in reply to MaddyS]

Sorry should read LARGE

[Ang_ross]

Yes. My Dad very quickly lost use if his eyes. He could see up but could not see down which meant walking was even more difficult as he could not see his feet or the food on his plate to eat. Even to the end he could see my face if I stood above him though. I think that is a fairly general symptom.

Psp is cruel. But my dad kept his sharp mind right to the end last month. Take care. Xxx

[easterncedar]

With all the other problems in ability to move the eyes, to focus, to blink or keep them open that others describe, my guy also said on a couple of occasions in the past year that he had suddenly gone blind. When I asked what he was experiencing, he described very exactly a break in his brain's processing of visual information. That is, he could realize when he concentrated that the problem wasn't with his eyes. He could see, but suddenly wasn't able to know what was in front of him. It seemed to pass, but I think it happens to a lesser degree on and off all the time now.

The double vision is a big problem, and he often has to feel his way around whatever he is trying to do. He can't read, since his eyes can't track from one line to the next. We have tried prismatic lenses and changed his prescription many times lately. It's very hard and frustrating.

[abirke in reply to easterncedar]

I am sorry...that is so my husband. In fact when I asked the neurologist if it was psp, the first test he gave was to see if eyes could track up and down. They could not he confirmed my suspicion and he proceeded to tell me that he has only had one other patient and that was many years ago....

They say that the minds eye loses sight or processing what is being seen is very much a symptom. I don't know if B has experienced what your guy has but I don't doubt it as he has alot more "IDK"s for his answers now. though he can still tell me to turn this way or that when i'm driving.

avb

[cabbagecottage]

who knows I think it's a lot of quests work sometimes !

john was diagnosed Parkinsons 11 years ago . He had always been an avid reader but gradually couldn't anymore .We bought. Bigger TV now he cannot see it at all properly ..

he had his eye tested at year ago and they said it wasn't exactly the sight they made some glasses but they were not v strong , it's a lot to do with the brain deciphering things I think in tol of that . If I pass his something he will reach out for it and miss it completely . His gaze drops and the lids close . As does his head drop into his chest

it's so complex .

[erin]

My husband had extreme photo sensitivity before he was even diagnosed.

Then he had problems with his eyelids closing, the medics call it ptosis.

For two years Botox worked wonderfully, then it could no longer help.

He has tried 'Lundy loop' glasses, which help some people, but he could never really get away with them.

Sadly he is now functionally blind, one eye will occasionally pop open, but never for more than a minute or two. It's awful. He can't even enjoy TV as he did.

When he was first diagnosed I read that this could happen, and cried even at the thought of it. Now it is here for him.

He tries to adapt, and we still go out and about, but it is by far the hardest to bear x

[Tz2388]

Because of not blinking, , my eyes became very dry. We used lots of eye drops and salves at night, but by the time we got to the Mayo Clinic, one eye had become inflamed and we were told I was in danger of losing that eye ball. And if we didn't start on some real strict regimens, could lose both. So, yes, it could cause blindness. Even with it under control now, I suffer from the same things others have mentioned here and can see or focus on almost nothing.

[JB569]

Yes sadly it is a symptom of PSP but all patients are different and experience some, not all of every symptom there is. My mother is now blind in one and only partially sighted in the other. The double vision and watery, dry eye bothers her the most. We've seen specialists and not much they can do for her. We've tried lots of different brands of drops, gels and sprays. At the moment the one that seems to give temporary relief we found in Superdrug and it's called Murine eye gel. I do believe that everyone is different and what works for one may or may not help others. It really is best to try different methods out to see what works for you and the cruel thing about PSP is it changes and progresses all the time. Wish you well.