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Need advice for someone with early stage macular degeneration (self.Blind)
submitted by goaway432
I went to my eye doctor yesterday for some vision problems. It turns out I have early stage macular degeneration. I go to an ophthalmologist for more details in February, however my eye doctor has practiced for 30 years and said the signs are very clear.
From what I understand this means at some point in the not so distant future I'm going to lose my vision. Any advice on how to begin preparing for this?
Right now I'm seriously depressed over this. All of my hobbies and things I do to keep myself pseudo-functional are vision base (like knitting, reading, video games, and so on). I think I will just feel better if I try to be proactive about it and plan for it rather than just waiting and letting things get worse.
Thanks in advance.
From what I understand this means at some point in the not so distant future I'm going to lose my vision. Any advice on how to begin preparing for this?
Right now I'm seriously depressed over this. All of my hobbies and things I do to keep myself pseudo-functional are vision base (like knitting, reading, video games, and so on). I think I will just feel better if I try to be proactive about it and plan for it rather than just waiting and letting things get worse.
Thanks in advance.
KillerLag 4 points 6y ago
You don't have to give up knitting. I've taught blind people how to knit (mostly casting on and garter stitch, I suck as purling and casting off), and have personally knitted a scarf myself from beginning to end blindfolded (it took a while, though... casting on 8 stitches took 20 minutes the first time).
Definitely talk to your doctor to see what can be done. There may be two things that help slow down mac degen, though.
1) Amber coloured sunglasses, especially ones that have the top and side shields. Sunglasses in general will help, as they cut down UV radiation, which is the major cause of mac degen. However, amber specifically cuts out a lot of light closer to the blue end of the spectrum, which is closer to the UV side. The red sunglasses also help, but they often cause too much colour distortion. And yellow usually doesn't cut out enought light, although yellow is good for contrast (so may be better at night). See a Low Vision Specialist (which may or may not be your eye doctor. I'm not sure how they are set up in the US, but not all eye doctors are Low Vision Specialists) for specific recommendations. I personally use Solar Shields, but the Noir brand is also pretty good.
https://www.amd.org/sunglasses/
http://www.noir-medical.com/conditions/macular_degeneration.html
2) Talk to your eye doctor about ocular vitamins. Specifically ones that have Lutein and zeaxanthin. they may recommend you take it, they may not. It would depend on your medical situation.
http://www.allaboutvision.com/nutrition/lutein.htm
Also, ask your doctor about Lucentis. You may not need it yet, as that is for treating specifically wet Mac Degen, and you likely have dry mac degen. It has been useful for many of my clients, but it is also fairly expensive.
https://www.drugs.com/lucentis.html
I would also suggest that you check into something called "Full Spectrum Lighting". Those lights are designed to replicate natural sunlight, and that does help **some** people. The brands I am familiar with are OTT and Verilux. Talk to a Low Vision Specialist to give them a try and see if they help.
http://www.amd.org/better-lighting-for-macular-degeneration/
If you have any other questions, feel free to send me a PM or ask on here.
Definitely talk to your doctor to see what can be done. There may be two things that help slow down mac degen, though.
1) Amber coloured sunglasses, especially ones that have the top and side shields. Sunglasses in general will help, as they cut down UV radiation, which is the major cause of mac degen. However, amber specifically cuts out a lot of light closer to the blue end of the spectrum, which is closer to the UV side. The red sunglasses also help, but they often cause too much colour distortion. And yellow usually doesn't cut out enought light, although yellow is good for contrast (so may be better at night). See a Low Vision Specialist (which may or may not be your eye doctor. I'm not sure how they are set up in the US, but not all eye doctors are Low Vision Specialists) for specific recommendations. I personally use Solar Shields, but the Noir brand is also pretty good.
https://www.amd.org/sunglasses/
http://www.noir-medical.com/conditions/macular_degeneration.html
2) Talk to your eye doctor about ocular vitamins. Specifically ones that have Lutein and zeaxanthin. they may recommend you take it, they may not. It would depend on your medical situation.
http://www.allaboutvision.com/nutrition/lutein.htm
Also, ask your doctor about Lucentis. You may not need it yet, as that is for treating specifically wet Mac Degen, and you likely have dry mac degen. It has been useful for many of my clients, but it is also fairly expensive.
https://www.drugs.com/lucentis.html
I would also suggest that you check into something called "Full Spectrum Lighting". Those lights are designed to replicate natural sunlight, and that does help **some** people. The brands I am familiar with are OTT and Verilux. Talk to a Low Vision Specialist to give them a try and see if they help.
http://www.amd.org/better-lighting-for-macular-degeneration/
If you have any other questions, feel free to send me a PM or ask on here.
nekozuki 1 points 6y ago
This seems like sound advice for my situation. There is no diagnosis yet, at least from what I gathered at my eye doctor visit, but my MPOD score was 0.24 (she said it was 20 and they wanted to see it around 50). I've been eating leafy greens and tangerines to work on the issue. Supplements and Solar Shield sunglasses are in the Amazon cart now.
OP, I'll be following your progress. Your concerns hit home, especially knitting. I wish you all the best!
OP, I'll be following your progress. Your concerns hit home, especially knitting. I wish you all the best!
goaway432 [OP] 1 points 6y ago
This surprised me. I noticed the deal with amber sunglasses years ago when I got a pair to use (I've always had super light sensitive eyes). I've also already switched to full spectrum lights because I can see better with them than the normal ones. Back before I was put on disability and had serious income restrictions I kept reef aquariums and learned about full spectrum at that time.
My current glasses are the type that auto-darken inside of cars as well as in the sunlight and have a coating to block UV so hopefully that will help in the meantime.
When I knit right now I make socks, which while horribly complex to make, I'm not sure I could do it blindfolded yet. My sense of touch is not quite sensitive enough to figure things like that - although it's something I plan to work on if I can figure out a good method to do so.
Thanks!
My current glasses are the type that auto-darken inside of cars as well as in the sunlight and have a coating to block UV so hopefully that will help in the meantime.
When I knit right now I make socks, which while horribly complex to make, I'm not sure I could do it blindfolded yet. My sense of touch is not quite sensitive enough to figure things like that - although it's something I plan to work on if I can figure out a good method to do so.
Thanks!
KillerLag 2 points 6y ago
The ones that auto-darken are good, but you may also want something to cover the tops or sides. Something like fit-overs. You want to reduce the UV as much as possible to slow the Mac Degen
Talk to your state's rehabilitation program, and see if they have an Independent Living Skills worker (they may have a different name in the US) that can teach you knitting with low vision. I was helping with a blind knitting group that got formed at my agency, they may know of something similiar. If you have trouble reading the patterns, you may need to enlarge it with a technological device (my wife often has her patterns on her iPad and zooms in if she needs to).
Talk to your state's rehabilitation program, and see if they have an Independent Living Skills worker (they may have a different name in the US) that can teach you knitting with low vision. I was helping with a blind knitting group that got formed at my agency, they may know of something similiar. If you have trouble reading the patterns, you may need to enlarge it with a technological device (my wife often has her patterns on her iPad and zooms in if she needs to).
goaway432 [OP] 1 points 6y ago
I'm already in with a social services group here in the US that might be able to help - although finding people who knit here is difficult for some reason. I'll be going back to the eye center tomorrow so will ask about fit-overs for them. Thanks again!
KillerLag 1 points 6y ago
The average age of the knitting group may be significantly older... for the group I was helping, 4 of them were over 65, and one was in her mid-20s.
Unuhi 3 points 6y ago
Learn to enjoy and use all your other senses,
Knitting and crocheting are skills once you learn them you are set fpr life. Maybe use bigger yarns and needles pr hooks.
For books, learn to enjoy audiobooks. Learn to read braille before you have to rely on it because it will make it easier. Even if you use it for just basic labeling.
Enjoy things where you use all your senses like cooking or gardening. Get friends to enjoy running and walking with.
Knitting and crocheting are skills once you learn them you are set fpr life. Maybe use bigger yarns and needles pr hooks.
For books, learn to enjoy audiobooks. Learn to read braille before you have to rely on it because it will make it easier. Even if you use it for just basic labeling.
Enjoy things where you use all your senses like cooking or gardening. Get friends to enjoy running and walking with.
goaway432 [OP] 2 points 6y ago
Thanks! I will start working on braille now as I had not even considered that (at least once I find some local resources for it). Knitting will be interesting since I use extremely small needles to make socks, but I'm sure I can work it out eventually.
Thanks again :)
Thanks again :)
Unuhi 2 points 6y ago
Braille bookstore (google) has some cheap slate & stylus combos, also get a few alphabet bracelets and friends to send cards to.
Knitting is brilliant. When you know the basics, switching to different gauge is not a big deal. I love knitting and love yarns with color and texture differences, like noro or some german sock yarn makers.
Knitting is brilliant. When you know the basics, switching to different gauge is not a big deal. I love knitting and love yarns with color and texture differences, like noro or some german sock yarn makers.
goaway432 [OP] 2 points 6y ago
I'll check that out now. Noro is fantastic! I also like Jawoll and Cascade for sock yarns. There's another one that's German whose name I have long forgotten (too lengthy for my poor American mind I guess lol).
Unuhi 1 points 6y ago
So many nice sock yarns these days. :)
I just got a stack of Noro this week, lovely grayscale and quite soft, so it'll become socks or maybe a scarf.
I just got a stack of Noro this week, lovely grayscale and quite soft, so it'll become socks or maybe a scarf.
claudettemonet 3 points 6y ago
Hi goaway432. Me too. Well Retinitis Pigmentosa... not macula degeneration . Anyway, my advice is to keep coming here. This subreddit has been my greatest comfort. There are amazing, wonderful people here on the whole spectrum of vision from sighted friends to totally blind from birth. Their stories inspire me, their accomplishments humble me, and their kindness continually renews me when my grieving soul is desperately in need of renewal.
In the months since receiving the news myself, I have somehow found a way to not be afraid and the people here are one of the primarily reasons for that. These people here and my family and friends in my life. But it was here I learned about blindness, which I needed to do to let go of my fears.
For my own story. My advice with your doctors is be persistent. I waited months for an appointment and months more for testing. Toward the end I got angry with the snails pace of the medical community and found a genetics lab and sent them my blood directly.
If you have to cry at a FedEx employee to make them send your blood across the country, don't worry. I'm not saying that's normal. I'm saying there is no normal. Do whatever you have to and don't apologize for it. If you need those answers get them, come hell or high water. And if the doctors suck at following up or calling you or getting you the modicum of information you need to sort out your next move mentally or emotionaly, then fire them.
Badger the hell out of whoever you need to. Cause you aren't dying. You will be back burnered. And that's kind of wonderful, because YOU ARE NOT DYING! Your life is just changing.
Apart from that, there is eventually vocational rehabilitation and guide dogs to think of. There is the basic problem solving that comes with adapting to a new life.. but that's for later.. that is for when you need it and this sub is great for giving you advice on that score. Any "how to anything" you need help with gets an immediate response around here.
But before that, I would recommend giving yourself the space to grieve. We, who lose our vision must, grieve. It is a very real loss. Talk it out, write it out. Don't lose yourself in despair, but let yourself mourn. We are here if you need that space. And I am personally here. I'll keep an eye out for your posts. It's a fairly small sub.
Take care and best wishes always,
Claudette
In the months since receiving the news myself, I have somehow found a way to not be afraid and the people here are one of the primarily reasons for that. These people here and my family and friends in my life. But it was here I learned about blindness, which I needed to do to let go of my fears.
For my own story. My advice with your doctors is be persistent. I waited months for an appointment and months more for testing. Toward the end I got angry with the snails pace of the medical community and found a genetics lab and sent them my blood directly.
If you have to cry at a FedEx employee to make them send your blood across the country, don't worry. I'm not saying that's normal. I'm saying there is no normal. Do whatever you have to and don't apologize for it. If you need those answers get them, come hell or high water. And if the doctors suck at following up or calling you or getting you the modicum of information you need to sort out your next move mentally or emotionaly, then fire them.
Badger the hell out of whoever you need to. Cause you aren't dying. You will be back burnered. And that's kind of wonderful, because YOU ARE NOT DYING! Your life is just changing.
Apart from that, there is eventually vocational rehabilitation and guide dogs to think of. There is the basic problem solving that comes with adapting to a new life.. but that's for later.. that is for when you need it and this sub is great for giving you advice on that score. Any "how to anything" you need help with gets an immediate response around here.
But before that, I would recommend giving yourself the space to grieve. We, who lose our vision must, grieve. It is a very real loss. Talk it out, write it out. Don't lose yourself in despair, but let yourself mourn. We are here if you need that space. And I am personally here. I'll keep an eye out for your posts. It's a fairly small sub.
Take care and best wishes always,
Claudette
goaway432 [OP] 2 points 6y ago
Thank you so much. I've had a difficult life already (nasty childhood and so forth) so depression is a daily struggle, but this is threatening to overwhelm me. It's so nice to hear from someone else going through the same thing and I will be around here from now on.
Right now it's so difficult to do anything. Everything I touch I realize in a few years I won't be able to do. The hardest part will be giving up knitting - I use it to help control PTSD flashbacks (plus hand made socks are awesome). But I'll deal with it like I have everything else.
I have a dog already so am very accustomed to having one around. She's a wonderfully goofy black labrador retriever named Ebony and she's one of my lifeboats (the other being my wife).
Thanks!
Right now it's so difficult to do anything. Everything I touch I realize in a few years I won't be able to do. The hardest part will be giving up knitting - I use it to help control PTSD flashbacks (plus hand made socks are awesome). But I'll deal with it like I have everything else.
I have a dog already so am very accustomed to having one around. She's a wonderfully goofy black labrador retriever named Ebony and she's one of my lifeboats (the other being my wife).
Thanks!
claudettemonet 1 points 6y ago
Hey there :)
You will be able to do more than you think. Knitting is definitely something you will be able to continue to do! Blind people knit, cook, write computer code, teach, raise babies, woodwork, play video games, reddit.. among other things. I like to chop veggies without looking to practice.. also learn to touch type now if you don't already. And also just ask people here about anything you want to do. They will help you problem solve a way to do it.
Realizing that blindness will be a challenge, not the end of my life as I know it, has really helped me let go of my fear surrounding blindness. Blindness is the most feared disability by most people. Most people know very little about blindness or people who are blind. A large part of that fear comes from a lack of knowledge and exposure. Asking questions and doing research helps with that.
Also, emotionally it helps to hear the stories of others who have experienced this. People to check out:
John Hull, the man whose audio diary became the soundtrack to the short film "Notes on Blindness."
Ryan Knighton, he is very funny. I just read his book about having a daughter. I was not terribly impressed with his strategies for adapting to parenting. He let his wife sort of take it over. He should have asked for baby specific training from his local resources.. but he is very funny. I like his talks on YouTube best. The book is like that, but is improved by his delivery. So I would youtube it. Also book is out of print :P
Molly Burke &Tommy Edison XP are both blind youtubers. I like Molly for simple how to videos, like how she does technology and make up. She also tends to ramble so tje how to videos are best. Also she is adorable. I like Tommy cause he is just so happy and jokey. He is blind from birth and he is just such a happy guy.
Also, as someone losing their vision, I LOVE this discussion between John Hull and Zoltan about choosing to continue or stop seeing in their minds. It is really a unique question only people like us will have to find an answer for.
I am glad you have a support system pets and spouses are the best. Husband and a cat for me :)
But the second I am legally blind! (My husband doesn't want a dog... but he won't be able to say no to a guide dog!) :D
...also, blind people on this sub do emoji, but if you use obscure Japanese ones you might want to include a description.
\(^ - ^)/ this an excited smiley throwing her arms in the air. Lol.
-Claudette
You will be able to do more than you think. Knitting is definitely something you will be able to continue to do! Blind people knit, cook, write computer code, teach, raise babies, woodwork, play video games, reddit.. among other things. I like to chop veggies without looking to practice.. also learn to touch type now if you don't already. And also just ask people here about anything you want to do. They will help you problem solve a way to do it.
Realizing that blindness will be a challenge, not the end of my life as I know it, has really helped me let go of my fear surrounding blindness. Blindness is the most feared disability by most people. Most people know very little about blindness or people who are blind. A large part of that fear comes from a lack of knowledge and exposure. Asking questions and doing research helps with that.
Also, emotionally it helps to hear the stories of others who have experienced this. People to check out:
John Hull, the man whose audio diary became the soundtrack to the short film "Notes on Blindness."
Ryan Knighton, he is very funny. I just read his book about having a daughter. I was not terribly impressed with his strategies for adapting to parenting. He let his wife sort of take it over. He should have asked for baby specific training from his local resources.. but he is very funny. I like his talks on YouTube best. The book is like that, but is improved by his delivery. So I would youtube it. Also book is out of print :P
Molly Burke &Tommy Edison XP are both blind youtubers. I like Molly for simple how to videos, like how she does technology and make up. She also tends to ramble so tje how to videos are best. Also she is adorable. I like Tommy cause he is just so happy and jokey. He is blind from birth and he is just such a happy guy.
Also, as someone losing their vision, I LOVE this discussion between John Hull and Zoltan about choosing to continue or stop seeing in their minds. It is really a unique question only people like us will have to find an answer for.
I am glad you have a support system pets and spouses are the best. Husband and a cat for me :)
But the second I am legally blind! (My husband doesn't want a dog... but he won't be able to say no to a guide dog!) :D
...also, blind people on this sub do emoji, but if you use obscure Japanese ones you might want to include a description.
\(^ - ^)/ this an excited smiley throwing her arms in the air. Lol.
-Claudette
goaway432 [OP] 1 points 6y ago
This is very much a relief. I love to knit and cook so that had me worried. Video games are something I enjoy but can do without if need be. It's somewhat ironic as I've done a lot of work in the past with the deaf but had never been around anyone who was blind. Thanks for the kind words and the support, I'm not going to let this stop me!
awesomesaucesaywhat 4 points 6y ago
You don't have to stop gaming! There are people on this sub who game and also film themselves playing. I am not a gamer so I don't follow them, but they post fairly regularly.
One thing I've learned is that going blind is about adapting. We can still do things we used to, we just have to do them slightly differently. It is certainly intimidating, but we can do it!
I love to crochet and it is something I still do. Technology is crazy helpful and I definitely recommend getting in touch with your local resources and getting assistive technology training.
It's okay to feel overwhelmed and lost, but know that those feelings are not your future. Take some time to mourn what you think you're going to lose and then try to take positive steps forward. You can do this.
One thing I've learned is that going blind is about adapting. We can still do things we used to, we just have to do them slightly differently. It is certainly intimidating, but we can do it!
I love to crochet and it is something I still do. Technology is crazy helpful and I definitely recommend getting in touch with your local resources and getting assistive technology training.
It's okay to feel overwhelmed and lost, but know that those feelings are not your future. Take some time to mourn what you think you're going to lose and then try to take positive steps forward. You can do this.
AlexandrinaIsHere 2 points 6y ago
This may sound weird... But I have an eye problem which may or may not lead to blindness, and something that helps my panic is making sure I know how to spell my favorite authors names as well as bands and such.
If I ended up in surgery suddenly and needed audio books I can totally tell my fiance what to purchase. (i don't buy the audio books just yet because they don't have much replay value for me and I want a lot of options that don't seem stale.)
If I ended up in surgery suddenly and needed audio books I can totally tell my fiance what to purchase. (i don't buy the audio books just yet because they don't have much replay value for me and I want a lot of options that don't seem stale.)
awesomesaucesaywhat 1 points 6y ago
This made me smile, thank you. It's reassuring to know I'm not the only one concerned about things other people don't seem concerned about. As the Girl Scouts say, be prepared! Lol
AlexandrinaIsHere 1 points 6y ago
I've been warned that if I don't have an surgery to correct an internal defect in my right eye I could lose it. I'm moderately terrified that it's a known risk of any eye infection (surgery- I could get an infection!) is the immune system going whacko and attacking the healthy eye.
Panic is a spiral. I will trust my fiance to help me no matter what, including whatever it takes to avoid an infection... I'm still procrastinating like hell in part because I'm pretty sure my apt building has a mold issue. But we will get there and I will not let panic keep rolling... But that eyes vision is so bad I can't really do anything with it. So long as I have some binocular focus it will suit me fine. If that eye functioned in daily life I'd be looking into which friends have clean mold-free homes for recovery.
Panic is a spiral. I will trust my fiance to help me no matter what, including whatever it takes to avoid an infection... I'm still procrastinating like hell in part because I'm pretty sure my apt building has a mold issue. But we will get there and I will not let panic keep rolling... But that eyes vision is so bad I can't really do anything with it. So long as I have some binocular focus it will suit me fine. If that eye functioned in daily life I'd be looking into which friends have clean mold-free homes for recovery.
awesomesaucesaywhat 1 points 6y ago
Ah, not smiling any more. Mold is a terrible thing to live with :( I was super sick for six months before finally figuring out it was mold in the walls of the apartment.
AlexandrinaIsHere 1 points 6y ago
Also procrastinating surgery cuz apt move in order.
Its ok- I'm not sick.
Its ok- I'm not sick.
alliek5913 1 points 11m ago
How are you doing now?
goaway432 [OP] 1 points 11m ago
Not so great. I've got about a 30% loss of vision and it's getting worse. My wife has cancer. Life sort of sucks right now.
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