vision decline

[ncgardener799]

My husband has PSP since 2015 and is currently having increased trouble with his vision. He has several pairs of glasses with prisms and various tinted lenses. They all help a little with comfort from light and double vision, but not with actually seeing well. Has anyone had better success with resolving vision problems by seeing a neurological opthamalogist? Currently I take him to his regular Opthamalogist who has been trying very hard to help him and has read the information I gave him from CurePSP.org in the US. Any information or advise from others who have similar problems would be welcome. Thank you!

[Caro2132]

I’m sorry but there’s nothing that can make this better or cure vision problems. We went to a neuro-ophthalmologist when my husband was having problems seeing. Nothing wrong with the vision itself. After extensive tests and hours long waits, she told us nothing could be done. It’s part of the disease. Luckily Mike enjoyed listening to music and books on tape, we also did a lot of trivia and I would read to him as well.

Find what suits you both to keep your husband interested and engaged.

Good luck

Caroline

[ncgardener799 in reply to Caro2132]

Thank you, saving me a lot of precious time as it sounds like you have approached same problems with no solutions. Thanks also for suggestions to keep husband engaged.

[Richard33 in reply to Caro2132]

Caroline,Yes that is helpful. I figured there was nothing much that could be done for Ruth who has declining sight.

Richard x

[AnneandChris]

Hello thereI'm sorry but I agree with Caro. Apart from a good pair of wrap around dark glasses and a cap or eye shade there is little one can do.

Chris used to like the radio in the morning and then repeat/recorded dramas in the afternoons.

It's a frustrating and cruel disease. Sending hugs to you, keep on keeping on.

Anne x

[timbowPSP]

Oh dear, sounds bad news.!I started double vision following a severe head injury 57 yrs ago (am now 79, with PSP diag 2.5 yrs ago). The d/vision was greatly improved by 3 eye ops, but just recently has started to get worse, and at this rate I'll not be safe to drive in a year. Better finish off writing the 'Family Story' and my Will and stuff while I still can. And remember that PSP stands for 'Please Stay Positive'.

[Runner333]

My husband was diagnosed with psp by our neuro-ophthalmologist (NO) at the beginning of this year after going to doctor after doctor the year before. Vision and dry eyes is something we deal with every day. Our NO does a very complete exam but says the equipment is fine (eyes) but the communication from brain to eyes is the problem. My husband has prism glasses and they help a little. He is very bothered by dry eyes and everyone here has been so helpful with suggestions. Drops, gel, wipes, mist, moisture goggles, omega 3. We have it all. Podcasts and audiobooks have been a help. Library has been a great resource for audiobooks. Audible is expensive. We have asked doctors many times if my husband will be blind and they say they don’t think so. Taking things day by day. It is strange to me that the doctors don’t seem to know about products available to help symptoms. I am so grateful for this site with psp warriors who share their experiences.All the best to you and your husband. We live in Maryland, USA.

[Indiana-Girl]

You do not mention where you live, but my husband, too has the same issue you describe. His care team recommended a company called Bard. It is the part of the National Library Service for the Blind and Print Disabled. You must be recommend by a medical provider. A representative will visit you and determine which product(s) will be best suited for your husband. They have a number of things that may help your husband. We live in Indiana but I believe they are nationwide. Ask your care professionals about them. If you would like to PM me I am happy to tell you more. We just started with them but so far I am impressed.

[ncgardener799 in reply to Indiana-Girl]

We live in North Carolina . I'm interested in hearing more about your experience. How do I private message you? Thanks

[Indiana-Girl in reply to ncgardener799]

Email me at [e-mail].

[Stephanielayell82]

I'm in North Carolina too...and will love to.find options here as my love one suffers from eye issues too. Eye doctor here says there is nothing to help the issue.

[ncgardener799]

HI Stephanielayell82. Where in NC are you? We are on the coast in Wilmington.

[oilman1]

My wife also has eye issues and was diagnosed with PSP about 1 1/2 years ago. The NO's (various) all concluded that nothing could be done. Her main issue is focusing, looking down, very high light sensitivity and continually wet eyes (all day, every day). She can no longer read and has difficulty watching tv. Her illness is progressing rapidly with a prognosis of less than 1 year. Very difficult disease.