"I can't see"

[Rubikcuber]

My Mum has PSP (diagnosed in Dec 2019). She is frequently saying that she can't see. But if you ask her if she can see how many fingers you are holding up she can tell you, what colour something is etc. We have an appointment with an Eye Consultant in January (arranged by the opticians due to concerns re Glaucoma) and I will mention it then, but not sure if they will have any experience with PSP and how it affects the eyes. Does anyone have any advice? Mum lives in a care home so it's passing on the info to the carer's as well as for Mum's and my benefit. It just feels like you get a diagnosis and referred to Speech and Language, physios, etc but no-one understands the disease nor is able to help you manage it - I just want to help and support my Mum with this awful disease. Thanks

[messier]

One of the key symptoms of PSP is that the eyes don't move properly. Please make sure the eye consultant knows about the diagnosis and does a specific check on eye movements. Basically it means that instead of moving eyes up and down she will be needing to move her head up and down, so it may well be that when she says she can't see she means that she can't look at the right thing. It may help if you encourage her to move her head - although that depends how rigid those muscles are. It's important not to forget that completely different things can happen to someone with PSP so it could be cataracts or glaucoma - but eye doctors are used to those!

[SimonandMaria]

Vertical mouvement of eyes gets compromised, hence, as an example, it becomes difficult to read because you dont manage to skip lines. Or you want to see something on the floor and your eyes dont go there... As messier has mentioned, if you moove your head it can help, but its not the same precision. Also, for one that has spent a life using the eyes it can take months to get used to this new situation. The “I can’t see” actually translated means : I cant see properly / I cant see as I used to.

Also, check for eye dryness, specially if medication is being taken for incontinence. Dry mouth can be a sign of dry eyes.

Eye doctor will definitely help, seems far in time though.

My wife complained of exact same symptom with same phrase... on one side she got used to it, on the other side her vision has somewhat improved again. 3 years after she mentioned it her reading is compromised but TV is still good. TV far away is better than close.

[Doublereeder in reply to SimonandMaria]

Thanks for the full extent of 'I can't see.' My Mum says this and knows for her shortly after she's up is her best time to read and I'll bear this in mind. But she insists on not having lights on and I'm sure that doesn't help but she insists it doesn't help.

[AHM51 in reply to Doublereeder]

My dad had the same issues as mentioned previously as well as double vision. Bright lights were also uncomfortable for him and this may be the reason your mum doesn’t want the lights on. Quite often if we were anywhere indoors that had bright light that we couldn’t control (e.g hospital) then my dad would wear sunglasses

[Willowden]

Yes I would agree with the comments above. From time to time my mum complains that she can’t see but it’s actually to do with the restrictions caused by the gaze palsy rather than a deterioration in vision. She did see a neuro ophthalmologist early on in her diagnosis who predicted that her vision would not be greatly affected- I do appreciate this is not the same in all cases. At her latest appointment with the optician her prescription had not altered. Another thing to keep an eye on! Fingers crossed it doesn’t get worse.Good luck with supporting your mum, it’s such a terrible condition to have.

[Scottoppy]

Very often patients with PSP have trouble scanning up and down, my wife has episodes of double vision too. This is caused by the muscles of the eye being affected by the palsy.

[SimonandMaria in reply to Scottoppy]

Dear Scottoppy , I beleive, but I’m not a Doctor, that the problem is not the “muscles of the eyes”. If you get a PSP patient to follow a Pen up and down, you will see that the eyes don’t move. But if you ask the patient to move the head up and down while fixing the Pen that in turn is not moving, you will see that the eyes do roll up and down maintaining the focus on the pen while the head is moving up or down. Hence the issue is not muscular...its more related to the fact that the uncontrollable reflex that allows us to maintain focus on the horizon prevails on the signal that instead would want to move the eye up or down.

It doesnt change the issue... but helps hopefully to understand better

[BattlingCHC]

If you can get the opthalmologist and the consultant caring for the PSP aspects to talk to each other before the opthalmology appointment that would probably be very helpful. It's likely to be an "interface" problem involving both medical specialities isn't it?

My Mum (suffering from 2 forms of dementia) complained about sight problems very early on in her mental decline.

[AJK2001]

Agree with the comments made already. Mum from early on often got double vision because the eyes didn't move together, unfortunately because this wasn't consistent, sometimes up & down, sometimes side by side, she couldn't use corrective lens and either had to put up with it or have one lens blanked out which meant she only had 2D vision and couldn't judge distances properly.She often said she couldn't see but sometimes if allowed time for her eyes to move and settle she could focus. Also telling her what she was looking at helped her to interpret what could be confusing as the eyes were not working properly together. As time went on she often sat with her eyes closed as the jumbled up images were too much for her to deal with.

I found it very frustrating that though she obviously could not see at all properly, because on an eye test, where each individual eye is checked she performed OK, she didn't fit the criteria for being blind or partially sighted. Eventually we got to see a specialist neuro opthamologist at the eye hospital (we referred by Mum's neurologist rather than the local hospital) who was very understanding and he agreed to certify her as partially sighted but for a retiree, that doesn't really benefit, whereas being registered blind (which she was for all intents & purposes) would have had some benefit.

[Auntbuzzy]

We have chased the vision issues through several ophthalmologists and neuro-opthalmologists, and have received some help. Hubby was functionally blind, just sitting with his eyes closed much of the time. I believe the eye issue is several things. First off, he had lasik surgery a couple of years ago, having one near and one far lens implanted. The neuro explained to us that the PSP brain is not able to make sense of the two images. So that part is irreparable. But the good news is that a cornea specialist diagnosed dry eye, prescribed restasis and good eye drops every two hours. Hubby now reads his paper, works his crossword puzzles, watches tv…. Sorry to be so long in this response but there are so few victories in this disease and this has so improved his quality of life I hope it helps someone else.

[easterncedar]

My guy feared going blind, because it seemed that his brain sometimes simply stopped processing the information from his visual field. He could when asked get details, and he never had any trouble telling the ophthalmologist what he could see on the charts, which led to lots of expensive new lenses, which didn't help at all.

[Rubikcuber]

Thanks very much everyone - really helpful! We've got an appointment at the Minor Eye Conditions service tomorrow so this all helps. This is such a horrible disease and my heart goes out to all of you caring for or suffering with this.

[Ughhhhh5]

My dad Danny was diagnosed in 2019 and very often complains of bright lights. I always carry sunglasses for him and make sure the curtains are closed. I’ve noticed when the lights are on at night he has more frequent falls.