Vision getting worse

[journeyofjoy]

I've read posts from some of you about vision issues. When Sandy is trying to read, it's blurry. His vision is fine other than trying to read. I just bought him higher powered readers and they don't help.

Any thoughts on this?

[Dadshelper]

I am guessing he is beyond a visit to eye doctor. See you can have him follow your finger as you move it side to side. Note if both eyes are moving the same. It may be his vision is blurry due to improper tracking of the eyes or just plain focusing issues.

Dad's ophthalmologist said his eyes were tracking slightly off from each other. He was not a Neuro-opthalmologist but he said there also could be a break down in the brain area that processes images.

Ron

[journeyofjoy in reply to Dadshelper]

He seems to be tracking fine but it may be something that I can't pick up by moving my finger.

[Red1990 in reply to journeyofjoy]

Does he use drops for dry eyes?

My mother complains of blurry vision and then wants her drops.

[bsilverman]

My husband has similar problems but it is because his eyes aren’t converging as they should to focus. His prescription was fine. It was helped briefly with prism lenses. Unfortunately, now it’s so bad the prisms would be 4” thick to be corrective and he then couldn’t see through the glass anyway because it would be so thick. Not to mention heavy. He does the best he can by using just one eye. He gave up reading a while ago.

[journeyofjoy in reply to bsilverman]

That's hard to be robbed of the few pleasures they have left. Have you tried audio books. Jeff suggested these.

[bsilverman in reply to journeyofjoy]

We have. He seems to prefer TV. Sometimes I will play an audio book when I visit him and he seems to enjoy it but he is beyond initiating it himself.

[Hidden]

Audio books. I would get them for Larry via the digital site the free library had.

[messier]

Eye movement problems are a classic sign of PSP and seem to appear later in some in CBD. The problem with reading is that your eyes have to move whereas looking at a TV or anything else once your eyes have got to the right place then you're fine because the focus is not affected. I'm worried about this for my mum as she spends a lot of her day reading the newspaper and magazines from the causes she supports and she is starting to have eye tracking problems.

[journeyofjoy in reply to messier]

This is one of the really awful symptoms of PSP. I can't imagine being confined to bed or a wheelchair and not being able to read.

[AnneandChris]

Chris has prisms fitted into his prescription for his lenses, however, these seem to be less effective now. Sadly I don't think I could get him to an opticians now as he would be unable to change chairs. He hasn't read for some time now and audio books didn't work for him either.

Good luck and keep on keeping on

Anne

[journeyofjoy in reply to AnneandChris]

Keep on keeping on. Like good soldiers, that's what we do. We're all stronger than we ever thought.

[AJK2001 in reply to AnneandChris]

Anne - I have taken Mum to the opticians and they have done the tests with her in the wheelchair, most of the equipment can be moved to fit. I found going to a large out of town Boots store worked really well as they had plenty of space to move the wheelchair around rather than the local opticians which was really cramped. Its also possible to get an eye test done at home, don't know quite how thorough this would be, but worth investigating maybe - Specsavers offer this service & I'm sure others must do too. xxx

[AnneandChris in reply to AJK2001]

Thank you, this is most helpful.

[Boyce3600 in reply to AJK2001]

where do u live? Explain Specsavers and what they do

[AJK2001 in reply to Boyce3600]

In the UK, Specsavers are a chain of opticians here, they have stores on the High Street but also offer this at home service.

[Tippyleaf]

My hubby saw a Neuro ophthalmologist who advised him to ditch the varifical lenses and have reading and distance glasses instead, in addition he was advised to cover one eye with a patch for computer screen and reading this helped for more than a year. Sadly the lack of synchronised eye movements ultimately meant he could not manage to read, so we used podcasts and audio books and I read the newspaper and his emails to him.

Hope you can find something which works for Sandy

Love to you both

Tippy

[journeyofjoy in reply to Tippyleaf]

Thanks, Tippy. Sandy can see a little better by covering his left eye. I'll get him a patch.

[Boyce3600 in reply to Tippyleaf]

neuro ophthalmologist told me

nothig could really help, but would try prisms. She was right about them not helping. I asked if there was a therapist that could work with him she said no. She was really helpful, right??

I found a therapeutic optometrist who referred me to a vision therapist who actually is an OT with emphasis on low vision. She helped him more than anybody!!! She was amazing!! The therapeutic optometrist was able to test his optic nerve and other things as well as fit him with glasses that helped and did not have thick lenses either. We are overdue for checkup...have had other issues come up which have warranted us postponing appointments. Currently he's in the hospital for stool impaction

I have a question : does PSP cause the patient to be unable to open his or her eyes even though they might understand what's going on

[Tippyleaf in reply to Boyce3600]

Sorry to hear your husband in hospital. The therapeutic optometrist sounds amazing!!

My husband would struggle to keep his eyes open and in his last year had them closed much of the time - he was not asleep. He was due to have Botox treatment which is supposed to help .

Love Tippy

[SewBears]

My husband can read and see but he cannot comprehend anything and he’ll read the same line over and over. Then, he’ll skip a line and lose his place. It I try to read for him I must say the sentence very slow and repeat it 3 or4 times, which can become frustrating and tiresome. I don’t think he has an eyesight problem but rather a brain that’s on the fritz. I’m not even sure if this is related to “vision getting worse” but I thought I’d throw this out there as part of my venting for the day. This f’d up disease is maddening sometimes.

Keep on keeping on...

[daddyt in reply to SewBears]

I know the problem all too well. It's definitely an eye issue and the brain as well. Infuriating at times. Makes writing and reading difficult. Keep On, Keeping On...

(:(:(:(:(: the subtitle of my second book soon to be released.

Tim x

[Hidden in reply to daddyt]

Keep on keeping on is exactly right! My mom can no longer read (although she still gets the newspaper delivered daily...lol). Thank goodness for the TV!

[mav46]

Sadly my mum lost her eye sight in January she saw two specialists her first eye went 3 years ago then she became totally blind this year. We are not sure if PSP related or not but nothing they can do and even more heartbreaking she is now in a wheelchair such a cruel disease she has had to endure so much pain she even broke her neck a few years ago due to her condition which we didn’t realise at the time. My mums name is Christine and we are in the UK her message to anyone on this site would be she wouldn’t wish this illness on her worst enemy but NEVER GIVE UP HOPE !! Hugs to you all xx

[Aprilfool20 in reply to mav46]

She must be so strong,mentally.I was diagnosed nearly three years ago and really feel like giving up most days. I’m not as bad her but at 61 this is not the retirement I had hoped for. She’s lucky to have family around. I have my husband but he is struggling and friends all lead busy lives. I live in Norfolk and hate having to rely on others to get out and about. Hugs Jayne xx

[messier in reply to Aprilfool20]

Oh I feel for you. Have you got any carers to come in? You should be able to get attendance allowance to pay for a bit of time. And there are a number of voluntary neighbourhood and befriending services that will help if you just need someone

[messier in reply to messier]

Just clocked that you are under 65 so attendance allowance isn't applicable. Sorry. I know there is an alternative personal independent payments but don't know the criteria.

[Aprilfool20 in reply to messier]

I do get pip,which pays for my cleaners ,gardener,chiropodist and manicurist.I manage my personal care at present and still manage to rustle up our weekday meals.Hubby is out at work all day, but we eat out at weekends. I’m trying to manage as long as I can without carers so I don’t feel so useless but it gets harder each day. Thanks for your concern. Must have been really bad in a previous life!😂Jayne x

[JCRy]

Ian has blurred vision in the evenings. Went to the optician last week who said the prescription was fine. The only way he can watch tv is with a patch over his left eye. Oo aarrr, mi hearties!

He has refused to take it further. Hey ho. We'll see.

Seems like we are going through the same things.

Big hugs.xx

[Sunsetboulevard]

My husband apparently has perfect vision according to the extensive examinations at Manchester eye hospital except he has tracking inability and double vision . His sight lines at eye level are perfect but he has blurring and double vision at other levels . As in all PSP cases he can’t look up, down or side to side .

He has a kindle for reading books which can give him large print but is now finding that tricky to use so our clever daughter has done something magic with an iPad so he can listen to audio books .

He’s been unable to read his beloved Guardian nor do the crossword so I read it to him .

I have a question to ask though . He is showing signs of confusion ..., asking several times a day what day it is , not remembering if I’ve given him his cbd drops , asking me how many people were around the other evening( none) , asking when Tommy was coming( his long dead dad) .

Is this a natural part of the PSP progression or have the many bangs on the head had some sort of effect on this ?

[messier in reply to Sunsetboulevard]

Yes these can be part of PSP.

[AJK2001]

Can you get an eye check done at home? I know this can be done in the UK.

[Railfan]

Our eyes are not only to move up, down, left and right but also in and out as they focus. Dry eyes and convergence issues can cause blurry vision but so can focus. I read in your post that he is having difficulty reading but can see fine otherwise.

What I notice in myself is that my difficulty moving my eyes up and down and my slowed down processing lead me to read the same line and sometimes the same word multiple times. It's not so much comprehension, it's processing speed. Apart from that, my eyes seem to change focus on their own or not very fast. It has slowed so much that its noticeable. If I try to change from looking at something close to something far, or vice versa, my focus oscillates or moves in and out for minutes. It seems more ready to settle on a mid distance, which is great for watching TV but not reading. I read most things on my tablet as I can make the text larger and easily move the text up or down. I also attach it to a stand so I can elevate it, tilt it and move it back and forth to obtain a relaxed focus range. This is only a temporary solution. The issue is that the range is changing as I progress and it might not be long before I need to have it farther than my reach.

Like with speech, swallowing, walking and rigidity, the choice to use the muscles themselves that allow your eyes to move and focus seem to be affected. The deliberate choice to move muscles is delayed, hindered or otherwise non-existent. That is why an outside agency can move us when we can't move them ourselves. The "dolls eye" movement test is a good example. I can't move my eyes up and down very far but they have normal range of motion if my doctor moves my head while I focus on a spot in the distance.

[daddyt in reply to Railfan]

Spot on.

Tim

[racinlady]

Joy,

There's been quite a bit of information on this subject on SmartPatients recently on a post called "Extreme double vision issues for my father" . Mostly what I see that works is to tape over one lens of his glasses.

We got my husband prism lenses which helped briefly. This condition is called convergence deficiency. It's another cruel gift from PSP that some suffer with and others don't seem to. I believe that my husband was very nearly blind the last several months of his life because he quit wanting to watch TV which was pretty much his world for 2 or 3 years before that. The last several months, he enjoyed the radio. My husband mostly liked to read newspapers and magazines so he wasn't interested in audio books. If Sandy's a reader, they sound like a good alternative.

Pat

[Abrecheisen53]

Boy it's been awhile since I really posted anything, just never enough hours to cram everything in. Your eye challenge however hits very close to home. I would say aside of the many symptoms of this disease we are struggling with, John's eye problems is one of the hardest and most depressing. John is in hospice now and while I have not found anything to actually help his eyes, we have found a few things to help cope. Due to the double vision, especially when driving in the car, John now sits in the back. He suffers from photo phobia, so aside of transition lenses and sun glasses, the darkness of the back seat also helps. I just took him on a three day fall color ride so he could see the beautiful leaves one last time. Of course he slept a good portion of the time, but I also know he got to see Mother Nature at her best. We too use a patch which seems to help rest at least one eye at a time. The addition of the drug tramadol has really helped with the eye pain.

We also use the hot compresses and eye drops and eye salve at night. It breaks your heart when he sits in his chair and the tears just run down his face. It's not like enough things have been taken away from this man.

Good luck - I do read the posts every night.

Sending you all a big hug from Wisconsin, USA. - Alice

[journeyofjoy in reply to Abrecheisen53]

Thank you for all the helpful information. I am so sorry for the tears. It is heartbreaking. My husband still enjoys life every day. I so hope and pray that this continues.

[messier]

I took mum to the opticians today. I chose one with a ground floor examining room that my optician recommended (he only has an upstairs room). Sadly we got the rather newly qualified one and she spoke quite sharply to my mum to get her to keep her head still when checking her eye movement. I had to intervene and explain that that's what she can't do! This was after I'd already explained that we were waiting for a neurology appointment but the GP had identified eye tracking problems and that's why we were there. I'll be asking for a more experienced one next time! The optician is going to ask the GP to refer to the eye hospital because she couldn't work out what prism to use. So another long wait... Oh and she has cataracts starting but not enough to operate because she doesn't drive - because of the CBD that the NHS hasn't managed to diagnose because of the 8 month waiting list after the last referral was to the wrong sort of specialist. So if you just have cataracts you get treated but if you have another disease on top that makes your vision worse you don't! No logic in that - in fact it's discriminating. it's all very frustratingly slow - and I work for the NHS and am pushing for stuff to be done! Rant over.