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Related: Editorials & Other Articles, Issue Forums, Alliance Forums, Region ForumsAnyone have experience with macular degeneration?
My mother just turned 80. Last year she had her cataracts done. Today she went to her eye doctor and her doctor took an image or something and mentioned macular degeneration possibly.
She went to her doctor about 5 months ago and there was no signs of it so this is just within the last few months.
Anybody ever have that or know someone who had that and like a time frame of how fast things can happen?
Thanks everyone have a great day
Cha
(297,322 posts)I've had first hand experience with it.
I've had it for years.. not too bad at first but has been getting progressively worse.
Still hanging in there.. have the zoom up to 200%.
The Retina Specialists advise eating greens & taking 2 Preservision AREDS2 a day.
Course it varies in different people.. Good Luck to your Mom
Klaralven
(7,510 posts)Also take melatonin. Melatonin is needed for the proper recycling of pigments in the retina. Most animals produce melatonin in their retinas, but humans do not. We produce it in the pineal gland, but produce much less with age.
Cha
(297,322 posts)Melatonin but I've been taking it anyway to help me sleep at night.
TY!
Cha
(297,322 posts)1. Spinach
Spinach is the ultimate leafy green when it comes to improving eyesight. The small leaf is packed with lutein and zeaxanthin, which are healthy antioxidants your eyes and body need.
These antioxidants help to prevent free radicals in the eyes. When free radicals are present, they lead the cells in your eyes to die off. They can leave you open to various vision conditions and diseases.
One disease that spinach helps to prevent is macular degeneration. Macular degeneration is a disease that affects the macula of the eye, which is found at the center of the retina. It is the leading cause of blindness in older adults.
When the macula begins to degenerate, it will slowly diminish a persons central vision. Though the macula will eventually degenerate, foods like spinach help to keep the disease at bay.
https://www.rebuildyourvision.com/blog/food-for-your-eyes/4-super-leafy-greens-for-improved-eyesight/#:~:text=Spinach%20is%20the%20ultimate%20leafy%20green%20when%20it,the%20cells%20in%20your%20eyes%20to%20die%20off.
I'm getting some Spinach Today!
Treefrog
(4,170 posts)I love spinach.
Cha
(297,322 posts)Me.
(35,454 posts)Cha
(297,322 posts)if you hadn't asked & I wanted to do the research.
Me.
(35,454 posts)Dale in Laurel MD
(698 posts)I was diagnosed about 10 years ago with very early stage dry MD, and the vitamins were strongly recommended. Thanks to the vitamins and spinach (I guess -- at least watching my diet) it's barely progressed at all in the meantime. It's also a good idea to wear sunglasses when outdoors in daylight.
Cha
(297,322 posts)you have yours under control from getting an early start with AREDS2 & Greens in your diet.
Some days I see better than others so that's encouraging!
Dale in Laurel MD
(698 posts)Apparently it's usually not caught until it's much more advanced. They were looking for another problem that turned out not to be there, but in the process they took a picture of 1 cm square and blew it up to about 1 foot square. That way, they were just able to see it. I still have an exam and a retinal scan every 6 months to keep an eye on it (pun sort of intended).
Cha
(297,322 posts)Buckeye_Democrat
(14,855 posts)Aloha!
Cha
(297,322 posts)it but thought I should come clean on this thread.
I have my trusty magnifying glasses strategically placed around, too.. that's how I read print that's smaller than 200%.
I hope you're doing alright with it, Buckeye Dem.. Aloha!
Buckeye_Democrat
(14,855 posts)Yeah, I'm well-aware of the different visual aids mostly because of my older siblings. None of those aids are very helpful to them anymore, but they did for many years!
My sister mostly relies on her husband, grandchildren and others to be her seeing-eye dogs anymore. Lol.
My brother is in a nursing home now mostly because of other issues related to strokes. I used to help him a lot because he didn't have a spouse or children after an earlier divorce.
Edit: Both of them were declared legally blind only after they qualified for social security. Yet their vision was truly horrible for many years and they couldn't legally drive a car while receiving no disability financial aid.
I used to urge my brother to just LIE while being tested, stating that he couldn't see the "big E" (or whatever was at the top of the eye chart) while wearing his glasses, but he'd never do it. Yet he was also cheating himself because he could only barely make out the letter while looking to the sides to find a good spot of his peripheral vision. You're supposed to look straight at the chart for acuity tests!
Cha
(297,322 posts)interested in how others are doing with it.
Seems I'm the only one in my family who's had it. I just hope I'm able to see well enough until the end.
I notice I can see better after I run, too.. so that's always an incentive to get me out there on the grass in front of the Kauai War Memorial where I do my laps!
Good on you helping your brother out before he had to go into the Nursing home & your other family members helping each other out!.
renate
(13,776 posts)Hes on a bunch of other supplements for other reasons too, but we were thrilled at his last eye exam when the doctor said it hadnt gotten any worse.
Cha
(297,322 posts)you were.. that happened to me at one point.
I haven't been able to see the Specialist since the trump Virus hit because the Retina Specialists are in Honolulu & aren't flying over to Kauai yet.. so I've been on my own.
Having steamed kale & quinoa for a late supper tonight!
May your dad's MD stay at bay!
soothsayer
(38,601 posts)In some people.
Theyd see like elves in the front yard, working away, and waterfalls coming out of skyscrapers.
I hope youre moms ok and can be treated though.
Biophilic
(3,666 posts)The physician first noted it in his father in law later experienced it himself when he developed AMD. Has nothing to do with mental problems but appears to be the brain's way of trying to cope with decreased information. It's a good thing for people to know about so that they can not be afraid of "seeing things" d/t having macular degeneration. People can see anything from mono colored shapes to entire regiments of soldiers marching through a bed room. Again, it is about the brain trying to cope with decreased information and nothing to do with mental capacity.
soothsayer
(38,601 posts)Biophilic
(3,666 posts)think they are going crazy and are afraid to tell anyone what is happening. Also, unfortunately, until recently most doctors had no idea what the condition was so they weren't much help to their patients. I believe that has changed recently, but I suspect that most doctors, unless they are gerontologists or eye care specialists still don't know about it. From reading accounts of people who had/have the condition it can be more uncomfortable than cool. A person has little or no conscious control over what they "see." Although I have read about some who really did enjoy their hallucinations.
soothsayer
(38,601 posts)Wonder how many fables and fairytales come out of that condition.
Biophilic
(3,666 posts)Charles Bonnet syndrome has also. Obviously a person has to have an idea in the mind about something but it appears to them than it clearly might be real. What an interesting thought. I haven't ever read anything like that before. Thanks for the thoughts.
PoindexterOglethorpe
(25,862 posts)I know there's a dry form and a wet form, and I'm not sure how different they are.
For what it's worth, smoking is strongly correlated with getting it. Another reason not to smoke. I'm not accusing your mother of smoking, as I know people who never have who still have gotten macular degeneration.
This is the kind of thing that would be worth researching on the internet. There are probably any number of good sites with information.
My mother, who was 82 when she died, was beginning to have macular degeneration.
Hoyt
(54,770 posts)with it, but it needs regular monitoring. The fact its early is good.
Heres a good article, not too detailed:
https://www.mayoclinic.org/diseases-conditions/dry-macular-degeneration/symptoms-causes/syc-20350375
Tommy Carcetti
(43,182 posts)Probably the last ten years of her life her vision got progressively worse. Never went totally blind, but only the peripheral vision remained.
FakeNoose
(32,645 posts)At first she was able to continue driving during the day but could no longer drive at night. After a few years she needed to give up driving altogether. She's close to 80 now and she has trouble seeing the television unless she's very close to it. She can still see light and dark areas around her, but reading is difficult unless she uses a special magnifying lens. For Ursula it was about 10 years of steady decline, and after that she was legally blind even though she still sees light and darkness.
Native
(5,942 posts)With regard to the wet eye, she gets a shot in that eye every two to three months, and that is supposed to keep it from deteriorating. I can't remember what the deal is with the eye that has dry macular degeneration.
Frustratedlady
(16,254 posts)They had told me earlier that I was in the beginning stage of MD. After that exam a couple years ago, I was in rehab for a broken bone and forgot about it. Then, COVID came and they were only taking emergency patients at first. Long story short, my eyesight began to turn and I made an appt. to get new lenses...much later than I should have made it.
After my exam, the doctor came in and told me my MD was progressing and I had wet MD in one eye and dry MD in the other. I had read that there were treatments for MD and asked him about it. He said there were and that he'd like to start one with my permission. Then, he explained what he would be doing. Hmmmm! It involved an injection in the eyeball and he was most concerned about the wet MD eye. I agreed and they got me ready.
I found it interesting that the most irritating was the fluid they washed my eye with which looked to me like iodine. I don't know what it was, but it was orange and stung a bit. They also dilated my eye, numbed it twice and then gave me the injection. How fascinating. I could instantly see the fluid entering my eyeball and swirling around like it was going down a drain. The shot didn't actually hurt like I thought it would, but I did feel it a bit. They then cleaned the eye thoroughly and I was done. However, I will have to get an injection every month until it is conquered. He thought 3-4 months.
The main problem was leaving. I am your mother's age...a little older...and use a walker. My son-in-law had to basically guide me to the car since my depth perception was shot for a while. When I got home, I hit the recliner and slept for a couple hours. The main problem was it felt like I had a rock under my eyelid, but that finally went away. This morning, that irritation was basically gone. I've slept most of the day and feel pretty good now.
There are other treatments, but he didn't get into them. I'm just glad there is a treatment and hope it works and I don't end up having injections every month for the rest of my life. Eyesight in precious and I never should have waited that long to get back for an exam. I know better, but COVID ruled the land and I was scared of contracting it. My bad, but I'm now aware that I'd best pay attention to my immediate health corrections and not put off exams.
I will add that I could see a difference in my eyesight last night. That was encouraging. Today, it is even better. Once they are done with the treatments, they will examine my eyes again for new lenses, as each injection will change the eye. Hopefully, I won't have to work on the dry MD eye and can get new glasses soon.
Good luck to your mother.
MizLibby
(289 posts)Thank you for posting your experience.
Hekate
(90,714 posts)Buckeye_Democrat
(14,855 posts)It's a type of early-onset macular degeneration that resulted from a very rare genetic condition.
A couple of my older siblings have been legally blind from it for years. It started to affect one of my eyes in my 30's, but there was no effective treatment at that time. So I'm legally blind in one eye.
By the time my other eye was affected -- e.g., detectable by vision distortions as fluid leaked behind and into the retina, like someone pushing against a previously flat movie screen -- a new experimental treatment was available.
Long story short, it worked! It was an anti-VEGF drug called Avastin. I needed it injected directly into the eyeball for years, about every month or so.
Then something incredible happened to me from a mugging/assault which could have killed me, but instead it caused scar tissue to form in my "good eye" at the perfect location! It formed directly behind Bruch's membrane, which had tiny cracks that had previously allowed the blood vessels to grow and leak into my retina in the first place. So the scar tissue basically sealed those cracks, and I haven't needed the Avastin injections ever since!
Scar tissue is normally what you want to avoid! If the leaking is allowed to persist for too long, scar tissue will form and it's usually within the retina. Once that happens, it interferes with the high-metabolism of the photoreceptors and the RPE (retinal pigment epithelium). Then the photoreceptors essentially drown in their own waste and they die, never to be replaced.
Be thankful that there's effective treatments now, at least for the the "wet form" of macular degeneration which can cause blindness very fast.
By the way, I'm always surprised by the inaccurate depictions of the blind spots that result from it -- e.g., a photograph with a large black spot in the middle of it. They're terribly inaccurate because:
(1) They'll show the areas outside of the black (blind) spot as being clearly visible, but the peripheral vision is actually pretty terrible at providing details. You can't see such details with your peripheral vision, allowing a person to read with it and such.
(2) They're not black spots at all! The blind spots instead get "filled in" by the brain with whatever is visible around it. So if someone with a large blind spot in their central vision looked directly at a painting displayed on a red wall, all they'll see is red as if the painting doesn't even exist.
Best wishes to your mother!
Cha
(297,322 posts)detailed report on your kind of MD. Amazing how the "mugging" actually helped you in the long run!
I have the dry kind.. the specialists are evidently still working on a helpful cure for that.
Buckeye_Democrat
(14,855 posts)As far as I know, you're taking the best course with your diet and just trying to stay healthy overall.
Thanks! My perfectly-placed scar tissue was so incredibly fortunate! It also makes me hopeful that there could be new techniques in the future to help others with the wet form, other than the repeated anti-VEGF injections.
VEGF is used throughout our bodies to promote blood vessel growth toward the cells that release it. As cells age, they tend to release more if it. The cracks in Bruch's membrane were there from the time I was very young. Yet it was only when the retina cells started releasing VEGF to get more oxygen and nutrients from the established blood vessels that are SUPPOSED to be nearby (entering the retina with the optic nerve), that the VEGF also leaked through those cracks and thus promoted new (and fragile) blood vessels to grow through them into the retina where they'd inevitably leak.
It's very similar to what happens in the wet form of "age-related" macular degeneration, so the treatments are identical.
Cha
(297,322 posts)understanding and explaining all that technical stuff!
Mahalo for the .. needed it.
Buckeye_Democrat
(14,855 posts)I always wanted to understand it deeply, figuring it could be useful eventually. I tend to be that way in general too, majoring in math & physics because I wanted to try to understand the world at a fundamental level. (An INTP personality-type.)
Best wishes to you, as always!
questionseverything
(9,656 posts)Is what hubbys doc said
Cha
(297,322 posts)I'm vegan & don't do fish oil.
Ex Lurker
(3,814 posts)She gets an injection in that eye every few months, which sounds painful, but she says it isn't, just makes her eye water for the rest of the day. Hasn't affected her much other than that.
tanyev
(42,568 posts)She had wet MD, which all they could do is recommend a specific type of vitamin mix for her to take. With dry MD, there are apparently shots to inject something into the eye. Mom's MD annoyed her, but she could still function. Trips to the special clinic in Austin every 6 months to monitor her progress. She died at 93 from other causes and never lost her sight entirely.
Buckeye_Democrat
(14,855 posts)The shots don't help the dry form, which is a much slower process that typically involves deterioration of the RPE that helps remove waste products from the retina.
tanyev
(42,568 posts)It's been a few years since I dealt with all that.
Buckeye_Democrat
(14,855 posts)It's totally understandable, and I mostly wanted to reply in case others got the wrong ideas.
CatWoman
(79,302 posts)In mr right eye.
It came back in January, this time in my left eye.
Yesterday i had my 3d shot and go back next month for another. I guess then I'll find out how many more I will need.
farmbo
(3,122 posts)On my Optometrist's recommendation, I started taking Octuvite (Bausch & Lomb) 50+ soft gel supplements, one a day.
I'm now in my late 60s and it hasn't progressed, so I'm sticking with it (fingers crossed).
questionseverything
(9,656 posts)Besides the vitamins and 🥬
Buckeye_Democrat
(14,855 posts)... learning that most of it is RANCID within the pills. And the rancid oil actually promotes inflammation.
The medical trials that showed health benefits always used very fresh fish oil.
I just try to eat some fresh oily fish periodically now.
llmart
(15,540 posts)I was diagnosed at about 57 years old. My optometrist said that was rather early to be diagnosed with it. It pretty much stayed the same for about ten years but one day I noticed my vision was "off". If I looked at anything with a straight line it would look curvy to me. I immediately called my retinal specialist who had me come in and he informed me that the dry had turned to wet and that I needed shots every month, quite possibly for a year. I had one shot and the next visit my vision had improved immensely. He eventually only had to do the shots for 9 months and then we monitored every three months, and now it's every six months. He did tell me that the chances of the other eye doing the same thing are much higher, but so far that hasn't happened.
The shots are really nothing. They numb the eye with drops, prop the eyelid open with something that looks like an eyelash curler and you don't really feel anything. You immediately see the liquid floating around but that's just a bit annoying and goes away fairly quickly.
One thing I have noticed is that on any given day my eyesight can be better than the day before or worse. I keep thinking I need to get new glasses, but I doubt that would be a solution. I used to wear readers in my younger days because I was rather nearsighted, but now I can read just fine as long as I don't have my prescription glasses on.
I'm 72 now and that's really the only health issue I have. Judging by the numbers of people I see in his waiting room every visit, I'm beginning to see this isn't such a rare condition. As an aside, in the past I raised and trained guide dogs for the blind and volunteered at the school for eleven years. I've often thought that if I became totally blind, I'd just get a dog from them.
Buckeye_Democrat
(14,855 posts)Great descriptions of things that I left out in my earlier posts.
I assume that you were given an "Amsler grid" to help detect new visual distortions too? I never really needed it. I'd just notice telephone poles and the like that suddenly looked bent, before I even bothered to look at the grid.
llmart
(15,540 posts)With me, I noticed the change when all the doorways in my house looked curvy instead of straight. I knew something was wrong. I also tend to walk too closely to doorways and bump my arms if I'm walking too fast and not paying attention. I've learned to slow down since. I sometimes have trouble judging how close I am to things.
What floored me on my first visit after the wet occurred was the price of each shot - $2300! They started handing me literature from the drug company about how I could get help if I needed it but turns out Medicare covers it and I have a supplement plan so I've never paid one penny. I can only imagine what it must be like for people who don't have that. I was mentally doing the math in my head when he said "probably twelve shots, one per month for a year" and multiplying that by $2300 a pop! Egad.
Buckeye_Democrat
(14,855 posts)I always received Avastin, which cost me about $300 per shot.
That was plenty expensive for me, given my pay rate and the fact that health insurance wouldn't help me since it was deemed an experimental treatment for macular degeneration.
Avastin was developed as a cancer treatment, administered by IV bags. It had received FDA approval only for that, not to be injected into eyes to treat the wet form of MD.
It was ophthalmology researchers in Florida who first tried injecting it into eyes, and then the success of it quickly spread throughout the ophthalmic community across the country. And it was a drug that was easy for eye doctors to acquire from hospitals, since it wasn't a very successful treatment for cancer anyway.
After the far greater success as a treatment for macular degeneration, the pharmaceutical company (which never even discovered that application themselves) created another drug called Lucentis. It was chemically simpler than Avastin somewhat, and they later received FDA approval for it as a treatment for age-related macular degeneration.
They set the cost of each injection at over $2000! And since my macular degeneration wasn't "age-related", it would still be viewed as an experimental treatment for me and health insurance still wouldn't help pay for it.
Then that pharmaceutical company decided to corner the eye market for Lucentis, trying to use the government to deem it illegal for any eye doctors to acquire Avastin and then divide it for the much smaller eye injections. They argued it could be unsanitary after dividing it into smaller amounts, so they were just concerned about the welfare of their eye patients. Yeah, sure! LOL!
If that ploy had worked, I would've went blind in the other eye too. There's no way that I could've afforded $2000 for each shot! Then I surely would've ended up on disability thereafter, with taxpayers paying for my continued survival. But, hey, at least outlawing Avastin eye-treatments would increase the profits of the pharmaceutical company in the meantime!
They thankfully backed off their greedy efforts because eye doctors all over the country, who had collectively learned themselves that Avastin worked great as a macular degeneration treatment, stated they would NOT stop using it! I'm sure that many of them even threatened to never use Lucentis as well, if that's the game they wanted to play.
So I continued getting Avastin for several years and, because of that, I can still see with 20/20 acuity in my remaining good eye (while wearing corrective lenses).
Edit: I'd like to emphasize my deep thanks to the scientists who developed Avastin, and later Lucentis. It was the businessmen of that pharmaceutical company who tried to rip the treatment away from me, for the sake of greater profits.
GusBob
(7,286 posts)Diagnosing and managing and living with it myself
There is plenty of good advice above
Wet vs dry . It sounds like dry from your post To answer your question: dry is a slow process. Wet is fast growing. Neither is the the horrible disease it use to be with proper treatment
Vitamins and green leafy Vegetables. Don't smoke.
The only advice not mentioned and maybe the most important. A take home test called Amsler grid which detects the onset of wet MD in its subtle form. You can print one out and the directions are fairly simple. Make sure to test each eye routinely like weekly. I tel,lfolks to tape it to bathroom mirror or fridge. It's months before Dr visits and that is a good diagnostic test in between
msfiddlestix
(7,282 posts)Do you know, or does your mom know if the condition was described as "wet" or "dry"? Wet Macular Degeneration is more concerning, it is progressing at a "rapid" rate. Dry is slow.
There are treatments I haven't attempted to try. But I think it's strictly for "wet" conditions, but I don't know for certain.
I was diagnosed in 2010 but only because I went to a free clinic in order to get a much needed free eye examine and prescription. I'm pretty sure it began in 2007/2008.
My condition is considered "dry" so far. It has progressed significantly at this point, but it's now 10 or 11 years from diagnoses.
It has been impossible for me to safely drive at night for the past four years. I've had cataracts removed, that wasn't the issue.
Vision has deteriorated to the point under certain conditions driving on a sunny day is unsafe. I cannot see when driving through a deeply shaded, tree line road creating a significant contrast of shade vs bright light from the sun.
I'm unable to see facial details of others a few yards away. I have to determine who it is I'm looking at by other characteristics, like the gait of their walk, height etc. Can't use the hair color anymore, because most of my neighbors have white hair.
I am unable to see black framed eye glasses on a black table. I could go on and on. But fortunately, I don't have what is referred to as "wet" condition, which means a very rapid rate of progression.
I'm told by my Ophthalmologists that I should start mentally preparing for the time when I won't be able to read text, and see much in the way of details.
I have a couple of black appliances like a microwave. I put a red sticker dot on the stop button, and yellow one on the start button. Do the same thing on my black portable CD player. I require a lot of lighting in the house. But other than I'm good.
Just wasn't expecting something like this developing in my life, I used to have 20/20 vision until computers. then every changed.
I think there's a lot of research going on. One that may involve gene code editing, that might be in the works, but I don't expect to have access to these study groups.
In any event. If you'r mom's condition is progressing slowly at the age of 80. that shouldn't be that much of an issue for functioning.
You might want to check with her doctor on the specifics.
I shared my experience in real time hopefully to help. I'm 70 1/2, and though it's sort of pain in the derriere I don't let it slow me down too much. And I can still l play my instruments, my hearing is just fine!
so far...
moonscape
(4,673 posts)wet in one. Have gotten injections every 6 wks for 7 years or so for the wet, and while I no longer read books and need magnifiers for small print, I have no other visual limitations yet. Its annoying, but because it progresses slowly one adapts.
It runs in my family. My mother had lost her functional vision within a few years, but all they had for her was laser to stop bleeds vs current medication, and laser caused its own damage. I feel blessed and am sad remembering how quickly I watched her vision go.
Deminpenn
(15,286 posts)The "dry" kind is just natural deterioration of cells. It can go a long time without having a major effect on quality of life.
The "wet" kind is what causes 90% of all blindness associated with AMD. It happens when the tiny, tiny blood vessels in the eye behind the retina leak and damage the macula, the cells that are used for the fine, central vision needed for reading, etc. There are shots that help some people. Avastin seems to be the most popular. It's a repurposed drug that was developed to treat colon cancer by preventing new blood vessel growth. It blocks growth of the tiny blood vessels in the eye that leak and damage the retina. There's no cure, but the shots can buy years of time in disease progression. Fortunately, "wet" AMD is only about 10-15% of all cases.
SharonClark
(10,014 posts)She used to get shots until the doctor said they no longer work for her and there was nothing he could do for her. She reads with the help of magnifiers we purchased at the Iowa Commission for the Blind.
Shes 90 now and was first diagnosed 20 years ago.
Ms. Toad
(34,075 posts)Both took years to progress.
My mother's started as dry - and is now wet. She gets injections to slow the progression.
She is legally blind in one eye - and expected to be unable to pass her driver's license test this year on her birthday. (I haven't checked to see if that materialized or not, since she never drives out of her retirement community any more.)
Reminds me - I need to get an eye appointment. My doctor cancelled one a few years ago, and then dropped off of my insurance. Once things fall off my calendar they have a hard time getting back on. It's hereditary . . .
redstatebluegirl
(12,265 posts)My Dad and Uncle had it and then I was diagnosed with dry MD a few years ago. I take an anti oxidant and Areds II twice a day. My Dad had wet MD and his sight went south really quickly. I do everything they tell me to and mine has stayed static. I can still drive, and only need readers since cataract surgery. I have good sunglasses and never go out without them.
I eat a lot of leafy green veggies and carrots too. I wish her, and you the best.