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Rorey

(8,445 posts)
Fri Sep 8, 2023, 08:49 AM Sep 2023

If I disappear from here, it won't be by choice

I'm not intending to go anywhere, but apparently I may not be able to use a computer at some point. Last week my vision started getting markedly worse. I have macular degeneration. It was the dry macular degeneration when diagnosed in January, but now it's wet in the surrounding area. I'm supposed to be getting a call from a retinal specialist, so hopefully that'll happen today, and hopefully I'll be able to get the shots in my eyes to try to stop it from progressing.

I gave my eyes a good washing with tears when I first realized what was happening, but I think I'm in a pretty good state of mind now. I've got a great support system, so that'll help a lot. I told my love-of-my-life that it was okay to dump me if he wanted to, but so far he is saying that won't happen.

It could be so much worse. I've had 69 years (and still counting ) to see all of the beauty in the world, and that's more than many have had.

19 replies = new reply since forum marked as read
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If I disappear from here, it won't be by choice (Original Post) Rorey Sep 2023 OP
If progression continues and your prognosis points to further vision loss, please look into all the hlthe2b Sep 2023 #1
Thank you so much Rorey Sep 2023 #2
There are scanners that will read text to you Warpy Sep 2023 #17
My eyes got a good washing just now reading this. Goddessartist Sep 2023 #3
You are so sweet! Rorey Sep 2023 #4
I have a Fresnel lens in my glasses for my left eye Goddessartist Sep 2023 #19
I have eye issues including dry MD. Prayers. Joinfortmill Sep 2023 #5
Mine went from dry to wet so quickly Rorey Sep 2023 #9
I'm going back soon. It's like living with a ticking time bomb Joinfortmill Sep 2023 #12
Every day is a day closer to better treatment or a cure Rorey Sep 2023 #14
Let us know how it goes Joinfortmill Sep 2023 #16
Aww, Rorey. blm Sep 2023 #6
Someone I know who gets the shots Rorey Sep 2023 #10
Same. blm Sep 2023 #18
Here's hoping that things can be done to prevent you from loosing your vision. wendyb-NC Sep 2023 #7
Thank you so much Rorey Sep 2023 #11
Geeze wizz! 2naSalit Sep 2023 #8
When I hear about someone with many limitations, I know I am so fortunate Rorey Sep 2023 #13
It can be... 2naSalit Sep 2023 #15

hlthe2b

(102,292 posts)
1. If progression continues and your prognosis points to further vision loss, please look into all the
Fri Sep 8, 2023, 08:56 AM
Sep 2023

assistive devices--including those that can "read" and "write" for you using digital, voice, and other technologies. This is not an area of expertise for me, but I'm aware that most states and large cities have resources for the sight-impaired and can advise you. There is likely some funding too.

Please check into these options ahead of time. I think that will go a long way to reassure you that adapting won't be as bad as your worst fears. Best wishes, Rorey.

Rorey

(8,445 posts)
2. Thank you so much
Fri Sep 8, 2023, 09:04 AM
Sep 2023

I've been thinking about that.

I talked to a relative of a relative a few days ago who has wet macular degeneration. She's been getting the shots and can still see. One of the worrisome aspects of that is how expensive they are. She said they're around $6000 and she gets them every three months, but there's a foundation that helps, so she hasn't had to pay anything at all.

Whatever happens, my doctor told me I wouldn't lose all of my vision. I'll still have some peripheral vision, so I can take care of myself. I'll adjust.

Warpy

(111,276 posts)
17. There are scanners that will read text to you
Fri Sep 8, 2023, 02:47 PM
Sep 2023

Large ones will read a whole page, small ones will read a line at a time. Developed for dyslexic people they can help those of us who can still see where the text is so we can set it up.

There are online programs that will read text for you. Some of them are free but I imagine you get what you pay for, the "free" one loaded down with trackers and the like.

I've found that setting the computer up to have white text on a black screen is a help. My Kindle Fire has a color inversion feature that does the same thing and the WaPo comes with an audio toggle on most of their articles. Audio books are all over the place. Audible is a great source because the books have great readers instead of the monotones found on Talking Books, something that drove my mother bonkers when she went blind. Classic books on audio can be found on YouTube. There are also sites that feature radio programs from the Golden Age of the 20s-early 50s.

My frustrations are that I can't drive and if I get anywhere to shop, I can't see much of anything. I have keratoconus now and the presence of Drusen bodies says I'll have ARMD eventually. I also have Sjogren's syndrome, so contacts are out while I still have some vision. It sucks. There should be only one nasty problem to a customer.

ETA: If you still cook, Ove Gloves are fabulous for grabbing anything hot. They're canvas gardening gloves with silicone stripes on them, so they're flexible. They also don't look as silly as welding gloves. I use a Chinese cleaver for chopping, knowing where the blade is prevents nicks and cuts.

Goddessartist

(1,800 posts)
3. My eyes got a good washing just now reading this.
Fri Sep 8, 2023, 09:36 AM
Sep 2023

I'm so hopeful for you, and wishing you luck today! I've lost some sight in my left eye, and can't control the eye itself as a doctor damaged it. As an artist, this is difficult at best.

You are very loved. It will all turn out well, I say!

Holding you in my heart.

Rorey

(8,445 posts)
4. You are so sweet!
Fri Sep 8, 2023, 10:00 AM
Sep 2023

Thank you for the kind words!

As an artist, yes, that must be extremely difficult. Do you have to wear a patch in order to help your focus with your right eye?

Goddessartist

(1,800 posts)
19. I have a Fresnel lens in my glasses for my left eye
Sun Sep 10, 2023, 10:17 AM
Sep 2023

so that I can use it most of the time. I was given a patch but that just weakens the eye further.

Rorey

(8,445 posts)
9. Mine went from dry to wet so quickly
Fri Sep 8, 2023, 12:31 PM
Sep 2023

The ophthalmologist said it was fortunate that I went in when I did. My next appointment wasn't supposed to be until January. I started seeing a little shadow on everthing, sort of like blurry, so I figured I better get in to see someone.

Rorey

(8,445 posts)
14. Every day is a day closer to better treatment or a cure
Fri Sep 8, 2023, 12:53 PM
Sep 2023

That's how I looked at it. I was just a little shocked at the speed of things.

One thing I should mention is that I looked at that graph with the dot every day that we use to determine changes, and it didn't really change. It's reading print. It suddenly got a lot more difficult. I see a shadow on things, and sometimes a little double vision when looking at something with arms reach.

Fingers crossed that your eyes will be good for a long time.

Rorey

(8,445 posts)
10. Someone I know who gets the shots
Fri Sep 8, 2023, 12:33 PM
Sep 2023

She's been getting them for a few years, and she said her vision is very good right after the shots, and then gradually gets worse again. She was very reassuring.

Honestly, it's far from the worst thing to happen to someone. I've been so fortunate that more hasn't happened. I'm no spring chicken.

wendyb-NC

(3,328 posts)
7. Here's hoping that things can be done to prevent you from loosing your vision.
Fri Sep 8, 2023, 11:31 AM
Sep 2023

Get as much info and assists as you can on things to make your limits less of a hardship. My thoughts are with you for a positive breakthrough. Blessings and Peace.

Rorey

(8,445 posts)
11. Thank you so much
Fri Sep 8, 2023, 12:36 PM
Sep 2023

One big thing is that I don't have to worry about total darkness. I might have to learn to stop being a control freak about myself, but that's probably a good thing.

2naSalit

(86,647 posts)
8. Geeze wizz!
Fri Sep 8, 2023, 11:59 AM
Sep 2023

I hope that you are able to get through this without vision loss but even if you do, there are options for staying with us, like the digital voice options.

The love of my life, when he was alive, was a quadriplegic and used many of the early applications for voice operation of his laptop. They got much better over time. I think there are a couple DUers who already use them, hopefully they will chime in with helpful experiences and advice.

Rorey

(8,445 posts)
13. When I hear about someone with many limitations, I know I am so fortunate
Fri Sep 8, 2023, 12:48 PM
Sep 2023

I'm honestly not pitying myself at all. I did have my tears, but this doesn't begin to compare to what your love endured as a quadriplegic.

The tears were mostly that I don't want to be a burden to anyone. I'm sure I'll have to allow my loved ones to do more for me at some point, but they'll be fine with it.

I still count myself as a very, very fortunate person. This is a little blip in the big scheme of things.

Thank you for your kind thoughts.

2naSalit

(86,647 posts)
15. It can be...
Fri Sep 8, 2023, 01:18 PM
Sep 2023

just as devastating to lose your sight as it can be to have the physical limitations, though different in nature. I am fortunate to have mostly good physical ability, still, but a few weeks ago I woke up with what looks like a small bug squashed on my glasses in my right eye, a floaty. Always had exceptional vision but this flaw freaked me the hell out and I went to the optometrist right away. It's a common thing and not a serious issue, I was told. But it also made me think about "what if" since I am approaching 70 and things are going stop working like they always have. With my arthritis in my spine, I am in a slow-mo version of my love's plight and will eventually be physically incapacitated as well. Not looking forward to it but that's the trajectory when the bone deteriorates enough. But that will be the end for me and I'm ready for it, I just want to have most of my other stuff working until then!



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