Gradually going blind

[LeeBeeUSA]

A neurologist recently told us that gradual loss of sight is not commonly associated with late-stage PSP. We're interested in the experiences of others in a similar place.

Should we get another opinion?

Regards to all

[Tippyleaf]

Dear LeeBeeUSA

Eyesight changes with PSP and it may be worth seeing a Neuro ophthalmologist. Tunnel, blurred vision, loss of upward and downward gaze are common and sadly the eyes become separate entities making focusing on an object very difficult. My husband had his cataract surgery with such high hopes but his vision gradually deteriorated and he was unable to read or watch TV . He used prism glasses which were really helpful for eating.

Keeping eyes open can also be a challenge for some people though there are some who benefit from Botox injections. Dry or watery eyes can also be a problem and both can affect sight.

Do try all the basics too such as regular eye tests as glass prescriptions change for all of us.

Love Tippy xxx

[LeeBeeUSA in reply to Tippyleaf]

DearTippyleaf:

Thanks for your prompt response. We've been dealing with all of the issues you mentioned for quite some time. We're now in the eighth year since diagnosis.

We've saw a neuro-opthhalmologist two or three years ago. Dealing with the loss of sight problem I mentioned came from Mayo Clinic neurologist just recently. I guess it won't hurt to get a second/third opinion from yet another professional.

Take care and be safe.

[racinlady]

I would definitely see a different neurologist. My husband described his sight as being like tunnel vision before becoming so blurry that he was finally unable to see well enough to recognize faces or see the television. I guess he wasn't totally blind because he could still see light and dark and motion, but he was legally blind.

Pat

[LeeBeeUSA in reply to racinlady]

Pat:

We're in about the same place. We've decided to "get a second opinion." In our case, a "third opinion."

Thanks and be safe,

lb

[MissTR]

Similar to others my mum had all but lost her sight. She could definitely see something, but she couldn’t watch TV or read. She also had sore, watery eyes. And as time went on she often closed her eyes. She continued to wear her glasses but I would say it was more of a comfort than a help.

[LeeBeeUSA in reply to MissTR]

Miss TR:

My wife's eyes are closed a lot any more. She says she's resting her eyes - I think because it's become harder and harder to keep them all the way open.

Thanks and be safe,

lb

[Sandiegk]

What have you done for sore watery eyes? My patient's only complaint is her eyes..it seems we have tried everything to no avail.

[LeeBeeUSA in reply to Sandiegk]

Dear Sandiegk:

We use lubricating eye drops at least twice a day and always at bedtime.

Thanks and be safe,

lb

[MissTR in reply to LeeBeeUSA]

My mum had drops but nothing else. Again that was the one thing that really seemed to bother her. Sadly we didn’t seem to find a fix for it. One doctor suggested putting a heat pad on the eyes for 10 minutes then massaging the eyes gently to help boost the natural lubrication, but we only did it once so not sure if they would help if done regularly.

[LeeBeeUSA in reply to MissTR]

Dear MissTR:

We are going to try some warm wet compresses, to see if that might help. If they do, we'll be sure let folks know.

Thanks and be safe,

lb

[zls23]

My mom has late stage CBD. Sometimes she can see and sometimes she can’t — it varies from minute to minute. She got prism glasses about 4 years ago, but they were only helpful for a short time. It’s clear now that her eyes are not operating together.

[LeeBeeUSA in reply to zls23]

Dear zis23:

Thanks for responding. I'm sure you appreciate how frustrating this can be.

Regards and be safe,

lb

[mjtogether]

As with all the other comments, my husband having same exact issues. I am not sure much can be done except prism glasses but I think eventually vision will deteriorate completely

[LeeBeeUSA in reply to mjtogether]

Dear mjtogether:

I fear you're right. It's just another issue on an already long-long list.

Be safe,

lb

[kpmdas]

My wife is suffering from PSP from 2014. From early stages, she had difficulty in seeing this near her behind or sides like other healthy persons. I think it is called partial impairment of peripheral vision. She was using bifocals, but later we switched over two pairs of glasses, one for near vision and another for long vision. Later she developed cataract on right eye for which surgery was done with lense changed, but in spite of testing and using new spectacles, her vision is not perfectly restored. But she can see things even though clarity is poor. She is reluctant to read Newspapers or watch TV , probably as her vision is not fully restored. As you suspected, we are happy that she can see things well . Hope it continues.

[LeeBeeUSA in reply to kpmdas]

kpmdas:

Thanks for you thoughtful response.

We've been through all the stages you mention. From what we can tell, my wife's vision has deteriorated to the point where everything is fuzzy/blurry out of focus. For the most part, her solution is the keep her eyes most of the time - like even when eating

She still "watches" TV but it's reruns where she already knows the story lines and can follow along by listening to the sound track more so than seeing the shapes.

A blessing in these regards is that she now spends a lot time with audio books that get downloaded to her cell phone.

As you know, it's tough but we persist. And sometimes need to solve problems on the fly so to speak.

Take care and be safe,

lb

[DeDeDickson]

Bob’s vision has gone steadily downhill over the two years since his PSP diagnosis. I have all the confidence in the world with the Mayo doctors but I must admit that I disagree with the notion of the eyesight not deteriorating with PSP. Perhaps the actual vision doesn’t worsen but control and sensitivity certainly make it extremely difficult to see.

xoDorie

[LeeBeeUSA in reply to DeDeDickson]

xoDorie:

Agreed. We'll keep working on this one till we're satisfied, like everything else PSP, that we've done all we can.

Take care and be safe,

lb

[Drjazz in reply to DeDeDickson]

I have CBD, similar to PSP. My eyes seem to want to go out of focus. It feels like the eyes are fighting for dominance. Once I get them dialed back in though, I still have good vision.

[LeeBeeUSA in reply to Drjazz]

Drjazz:

Thanks for writing.

We went through the same faze. Now we're just losing a bit more sight each day.

Take care and be safe.

lb

[SewBears]

Sorry about being late to post but I had to go over my notes to make sure I understood what the doctor said. It’s a bit confusing!

I hope that you can open this article about Posterior Cortical Atrophy. This is something that my husband’s doctor mentioned as a diagnosis for what’s happening with his vision. Now he has a triple jackpot (had to say that because we live in Las Vegas 😂) of LBD, FTD and PCA.

The article explains much about how the eye function is there, the brain function is there, but the brain CONNECTION between both functions are missing. Hubby is slowly going blind and his dx is PCA as a subtype to the rest of this nightmare.

Here’s the link:

alz.org/alzheimers-dementia...

❤️ SewBears

[LeeBeeUSA in reply to SewBears]

Dear SewBears:

I agree with the premise that the eye function is there. The brain function is there. But there's a short in the circuitry between the two.

We've decided to forego the trauma of yet another trip to yet another doctor, in another city.

It's tough but we persevere.

Best regards,

lb

PS: Sometimes I wish at least some of these doctors would go to websites like this and learn directly from the people dealing with PSP on a day-to-day basis. They'd learn something for sure.