Eye problems: As well as double vision I now... - PSP Association

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Eye problems

allany profile image
11 Replies

As well as double vision I now find it almost impossible to open my left eye independently of the right. I can open them both together but find this problem to be getting worse. Has this happened to anyone else out there is pap world

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allany profile image
allany
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11 Replies
NannaB profile image
NannaB

My husband has difficulty opening both eyes. He can do it, slowly, but it is an effort. Do you really need to open one eye only? It's different for me as I don't have PSP but from what you say, I think I wouldn't worry about opening them independently. It's good you can still open them together.

Best wishes.

Nanna B

easterncedar profile image
easterncedar

Yes, my sweetheart has just that trouble, and it bothers him greatly, seems to make him sleep more than he would otherwise. I wish I knew of something that would help, but Botox seems to me the only thing that is of use, and my guy doesn't want to do it.

jaylew9 profile image
jaylew9

Him

I have the same problem with my eyes,

It is so frustrating that I find I hard to type

And I can not read because of the double vision

And folk are always asking why my left eye is closed ,

I have always put it down to PSP but I wasn't sure until I read your

Post, so thank you very much for confirming this.

Kind regards

Jay. X

allany profile image
allany

Thanks for your response to me question 're my left eye. Guess it's something else we have to put up with.

Heady profile image
Heady

Hi, yes I'm afraid it comes with the terroity! My husband has trouble keeping his left eye open, especially when he is tired or bored!!! So keep well rested and properly stimulated!

Lots of love

Heady

erin profile image
erin

Try wrap around dark glasses.

My husband started like this. Botox helped for a good two years, so it's well worth a try, as are 'Lindy loop' glasses, which hold the eyelids open. My husband used an eye patch, too.

Ask to see an eye consultant, they can help.

Now both his eyes close, unfortunately, but dark glasses help to optimise the open times. He calls it being 'online' and 'offline' as I can't see if they are open or not!

Horrible to deal with, I know x

cabbagecottage profile image
cabbagecottage

yes John the same , once closed he appears to be asleep but often he can hear lol the conversations around him , I tease that he is hiding from me .

often as visitors leave he will goodbye sorry not have been able to talk .

ketchupman profile image
ketchupman

The eye issue is a hallmark characteristic of PSP and is how neurologists often determine a patient has PSP versus regular Parkinson's, which was the case of my wife, who is only 53 years old and probably came down with this dreadful disease when she was only 47 or 48. As the disease progresses, she was only able to keep one eye open at a time. If I asked her to open the other eye, sometimes she could, but then the opposite eye would close. But normally she cannot open them on her own and she has to use her finger to open. But when both eyes are open, I believe it causes her double vision, so it's actually better for her to keep one eye closed. I just had to get over the fact that she has only one eye open at a time.

We tried Botox multiple times. Her neurologist performed it 3 different times, each time she would inject a small amount in 3 places around the eye ... to the far left, the far right, and dead center. It looked to be painful even though the needle was very small. Often it would cause a small amount to blood to appear. But my precious wife is so strong and never complains, just winces a bit during the procedure. I really don't think these injections ever did any good whatsoever and are quite expensive. Fortunately our insurance covered the bulk of the expense. They say to expect it to last about 3-4 months.

About 6 months ago we went to see an eye specialist and he administered the Botox, however he tripled the amount. He injected 3 places above the eye brow, the same 3 spots at the eye, and also 3 places below the eye around the upper cheek. I can definitely attest that worked. Unfortunately she became more of a Hoot Owl and could barely keep her eyes closed, even at night when sleeping. And since most PSP patients do not blink but just a few times each minute, having the eyes open constantly causes them to dry out, which then causes the eyes to produce a lot of tears. So to combat that, you're constantly applying eye lubricant drops.

My hearts go out to each of you who are having to deal with disease. It's a mean one. We've tried several things to fight it. We were a part of one clinical trial a couple years ago (Davuentide) which was a flop. We tried Stem Cell Therapy last year. No results, although I think it was mainly because she was too far gone in the disease. There are a couple of new studies coming out now. One of them involves a NSAID prescription drug (Salsalate), which I'm going to talk to our neurologist about having her try even though she won't be a part of the actual clinical trial, since that drug is readily available at your local pharmacy.

God bless you all.

shasha profile image
shasha

BY THE WAY I TOO SUFFER WITH DOUBLE VISION AND BLURRY EYES - WHAT I DO WHEN WATCHING TV IS TO PUT A TISSUE UNDER MY GLASSES ON ONE SIDE WHICH HELPS A LOT ... BON CHANCE

shasha profile image
shasha

I LEFT ANOTHER MESSAGE WHICH HAS DISAPEARED !!!

Auntiemary profile image
Auntiemary

My husband's eyes water all the time, but the lubricants we got from the doctor seem to help a little. He also suffers from double vision, so closes his left eye more & more to try to focus. His sight is certainly going down hill quite quickly now.

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