New eye developments

[GmaDeb]

It’s been an “interesting ‘ few weeks to say the least. I was diagnosed with PSP in 2014 (I think). Other than being housebound, using a U-Step walker, not allowed to drive or cook and forgetful with short term memory loss, I was doing pretty good. Then this week happened. I have fallen twice, more difficulty speaking, legs are so weak that i’m Now using my wheelchair and I have blurred vision. The blurred vision bothers the most and the words run together in a black line. I love to read and play simple games on my tablet but can’t see well enough now. It’s been about 4 days and my vision remains blurry. I know PSP (supranuclear) has to do with eye movement but has anyone had problems like this? And if I have To go to audio books any suggestions on where or how? BTW- I don’t have a UTI. 😁

[raincitygirl]

Dear Gma Deb,

My heart goes out to you! I know what you mean about vision bothering you the most - of course it would! I'm no use to you - hubby didn't have this problem. As I recall, with the members who've reported severe vision loss with their loved one, the patients have been quite elderly and/or very close to the end of their life.

Do took have an opportunity to see a Neuro Ophthalmologist?

I'll follow your post with great concern and meanwhile, HUGE hugs to you! ❤️💗💜

Anne G.

[GmaDeb in reply to raincitygirl]

Thanks for the hugs Anne. I’m still waiting for a movement disorder clinic at Iowa State University to call me. I’ve never heard of a neuro ophthalmologist. We had 2 excellent neurologists but they both left for big lcity jobs last year. So I have to be referred out. The clinic is 8 hours away. So...🤷🏻‍♀️ -Deb xxx

[Hidden]

Hope your vision improves. One never knows with PSP.

As for audio books. Your public library may offer them. I have downloaded audio books for Larry from the Philadelphia Free library using the Overdrive app. There’s another app they also use called Hoopla. If your library doesn’t offer audio books you can join out of state libraries for a yearly fee. Philadelphia is $50 a year.

As easterncedar suggests you might want to try eye drop or an eye ointment. I use an eye ointment on Larry at night. It helps to keep his corneas from drying out because he doesn’t keep his eyes fully closed while asleep. The ointment is 97% petroleum jelly and 3% mineral oil. It’s an over the counter product.

A visit to a neuro ophthalmologist would be good.

[easterncedar in reply to Hidden]

In the US the IRIS network has a program called BARD, which sends folks whose sight is failing audio books and equipment for free. There is also a service that provides a sort of reader's digest of magazines that comes quarterly.

[Hidden in reply to easterncedar]

I live in Philadelphia and get things for free. Thanks for the BARD info. They have a site here if other are interested.

theiris.org/news/387/53/FIV...

[GmaDeb in reply to easterncedar]

I’ll definitely have to check into this one. It’s one I’ve never heard of before and “Free” is always helpful. Lol Thank you -Deb xxx

[GmaDeb in reply to Hidden]

Hi jeff166. Thanks for all the suggestions. We have a tiny library in our town. I’ll have to check with them and see what’s available in our area. Your mention of Philadelphia jogged my memory of a long-ago patient (?) who used that.service. I’ll definitely be trying the eye ointment. The drops just don’t help for very long. I had forgotten we used the ointment for my son when he was receiving chemotherapy treatments and bone marrow transplant. -Deb xxx

[easterncedar]

Sorry if this is too simplistic, but have you tried plain tear-type eye drops? Sometimes the blinking mechanism is affected and eyes can dry out. Regular dehydration can do it, too, and that's a common problem with PSP. Either way, dry eyes can be harder to focus.

[Motts]

Good Afternoon GmaDeb

My heart goes out to you. Have you had your eyes checked recently? If not I would do so soon.

My mom had blurred and later had double vision. She closed one eye a lot for some relief from the double vision. Of course with the double vision her falls increased, so please be careful. I hope someone has better info than I do.

Do you have better results when closing one eye while reading?

My son travels a lot and enjoys listening to audio books while driving. He gets them at his local library.

Sending you Hugs - Granni B

[Pavaga]

Dear Gma Deb,

My husband lost his vertical vision and he said he has lost about 30% of the peripheral vision. Reading is becoming more difficult day after day. There is a good selection of audio books at the Apple Store. So if you have an Apple account, it would be a great way to listen books or articles on your ipad or iphone.

My heart is with you,

Patty

[daffodil48]

I read somewhere that prism glasses could help with the double vision. If you can, as suggested see if you can go to a neuro opthalmologist.

[AnneandChris]

Hi GmaDeb

Sadly blurred vision is a symptom of PSP.

Chris had two pairs of glasses in under two years because of it. He now is unable to read and now has difficulty in watching tv. He sometimes tries to read the Radio Times to see what's on with a magnifying glass but usually end up asking me. His lids frequently droop and he lifts them with his fingers to see.

This condition is an absolute B*****.

Sorry to to have more positive info. I believe that they can use BOTOX to help.

Keep on, keeping on

Anne

[AJK2001]

Hi

I am afraid my Mum has had lots of eye problems, lack of movement, double vision, blurriness, etc etc. we have seen specialists to little avail. Here in the UK we have local talking newspapers, which keep Mum upto date with the local news which she likes - she has a USB posted to her each week & a liitle radio player to listen to it with - all FOC and then there is the RNIB talking book service, but she lacks the concentration for that.

[Richard33]

Hi,

Regarding audiobooks, Ruth and I just use Audible (the Amazon company) and play it through a smart phone (but you can use any tablet, laptop). Depending on your taste - we have really enjoyed the audiobooks by Liane Moriarty read by Caroline Lee - great feelgood stories.

Richard x

[Beads0122]

Deb,

It is good to hear from you again, but sorry it is about a struggle you are having. While not blurry vision, my wife struggled with night vision and reading ( due to inability to handle the word wrap on lines and loosing her place). I’m just glad you are still able to use your tablet to communicate with us. I hope you are able to find work around with your vision,

Bobby

[racinlady]

Hi GmaDeb, Sadly, balance and blurred vision were my husband's two earliest symptoms. This eventually progressed to tunnel vision-like symptoms. He was able, for a time, to still do a little reading with prism glasses. Choking, which so many people deal with has been the least of our worries. He's no longer able to communicate verbally, but I doubt that he sees much, if anything, anymore. I think the fact that everyone seems to follow their own path is one of the hardest things to deal with in PSP. It also limits the medical community's ability to help us. I do also recommend a neuro-opthalmologist if you haven't seen one. I hope you find some help. I know how losing the ability to read would affect me and my heart goes out to you.

Hugs,

Pat

[Teeker]

Hi GmaDeb,

Sorry to hear about your eye problems. My husband was diagnosed with PSP 2 years ago and has problems focusing. His eyes most of the time are fixed upwards to the ceiling. Another horrible present from PSP. Because of this, he is no longer able to use his mobility scooter, because he is unable to focus where he is going. Now I use the wheelchair to take him everywhere..... He used to enjoy the bit of independence he got from using the scooter but now he has to depend on me pushing him everywhere. He has a pair of prism glasses that he uses sometimes. Hope you are able to get help for your eye problems. Hugs to you.

Esther(teeker)x

[GmaDeb]

NOTE

: A quick note to all who have replied: Thank you all so much for your comments. They are so very greatly received and appreciated. I will read and reply as I am able/as my eyes allow me. Thank God for spell- check🙂

[Zibo]

How are you now, GmaDeb? Holding you in mind and hoping to hear from you soon.