I have it, too, redstatebluegirl

but I have cataracts too and that needs to be taken care of.

we need them.. for a lot of reasons!

hope everything turns out well for you and 'redstatebluegirl'.

to just do it!

All had cataract surgery. It went very well for all three.

My Mom's didn't but that was back in the 80s so I have to get over it.

I had a disease that caused my grandmother and several of her sisters to lose their eyesight, but a new surgery saved my eyes and cured the disease. I was lucky enough to have a cornea surgeon who specialized in my disease (Fuch's Dystrophy) in our state, just a couple hour's drive away. My husband and I have both had cataract surgery too, and not only was it easy but the recovery time was minimal I would only advise that you make sure you have an excellent doc who specializes in Macular Degeneration to advise and/or do the cataract surgery.

Losing one's eyesight is one of the scariest things for people but treatment of Macular Degeneration has really improved. Find the best to take care of you, Cha and Redstatebluegirl. Hugs!

You can see right away and the difference is breathtaking. The colors are bright! And the world is in 3-D!

I recommend cataract surgery to everyone who needs it.

as a bat but one adapts.

Mahalo, she~

I know bummer..

So sorry to hear this news. Sounds like you are blessed with an amazing husband. Peace.

There are audio books. Lots and lots of them, and I would guess it takes longer to listen to a book than read one. You won't lose reading.

This is hard news. I'm so sorry.

I imagine it is hard. Hopefully, the treatments will be effective.

We all care and are sending you positive thoughts -- for you and for everyone with this disease.

Your caring means a lot to me. I don't make friends easily so my DU friends are important to me.

You have a long journey ahead of you.. document as you go.. share with us.. so we can share with you our support.. I have been down this road with my best friend.. She like you, was a prolific reader.. and treatments have so improved..

I read this book and have been following his advice - especially wearing sunglasses. I am trying to ward off retinal detachment. This author is a research scientist at the University of Pennsylvania - look him up as he is very impressive. The major problem is oxidative stress from sunlight and other sources. We have to counteract that which is what he calls the vitamin cure, especially vitamin C.

The Vitamin Cure for Eye Diseases by Robert G. Smith, Ph. D., Basic Health Publications, Inc., 28812 Top of the World Drive, Laguna Beach, CA 92651, ©2012, 198 pp., $14.95

My husband has this problem.
It began in 2003 and he lost the sight in his eye before he was aware of the fact that he had this problem (he thought he needed new glasses and went to an optometrist to have his vision checked and there was no sight left so they had to seal that eye off surgically to prevent it from hemorrhaging ... ) .

The other eye was doing good for many years until ...
He developed the shingles and they attacked his good eye and his hearing as well so get a shingles vaccine if you can manage it (!!).

He has blue eyes and this problem seems to prey on those w/blue eyes more that brown or black.

Today he is no longer driving and his sight is not good at all.

He has to have eye surgery every 3 mos. for the rest of his life. He has been having eye surgery (injections of Avastin into the eye) since 2008.

So far, the injections are holding his vision and at the last surgery he was told his eyesight has actually improved (!!).

He is older than I am by many years and for his age he is actually doing quite well.

He has had to adjust to life with wet AMD as it is called and he has developed glaucoma on top of it now which makes a complicated problem even more difficult. Every day is a challenge for him and for me too as I am not well and we both rely upon one another greatly.

We go on any way as we must and as you must too!

I hope you make it to see the Eiffel Tower in Paris! That would be just great!

In the meantime here are a few hugs for you! and then some.

Be advised that much progress is being made in the treatment of both dry and especially the wet form of macular degeneration. My husband was told this when he was diagnosed with it and at that time they told him that if he'd been diagnosed with this problem a few years earlier it would have been the equivalent of handing him a white cane.

He has no white cane today and God willing he never will.

This problem does run in families you are quite right. My husband had nine siblings and about half of them have/had this problem (most are now deceased and he is one of the youngest of the ten children that were in his family).

My father had it as well (he had hazel eyes) and when he died, he was still driving and able to see well enough to read. I also suspect my grandfather had it as well and he was blind when he died at the age of 62 years and he had black eyes oddly, so on that one. There were no treatments for it when he my grandfather died in the late 1950s.

You might try contacting the Lighthouse for the Blind and see what info. they may have on recent/new treatments for this horrible problem.

Hang-in there and it sounds like you have a very supportive husband which is great!

That was my intent is to give the OP some hope. It is not the end of the world.

Just be sure to keep a very close check on your eyes and look at the Amsler Grid every day of your life is what I tell people with this problem. Here is the grid below:

http://www.allaboutvision.com/conditions/amsler-grid.htm

My dad used to keep it on the table next to where he ate so that way it forced him to look at the grid every day. I've know others that ignored the grid and then all of a sudden something is very wrong and it may have been caught earlier had they kept up with looking at the Amsler Grid every day!

I'm glad to have shared what I know about this problem. I guess when you are living it you learn all about it eh?

Glad to be of some help!

Glad to read this.

When I look at that grid it appears distorted in my left eye. Over 20 years ago I went blind in my left eye due to optical neuritis (this is how my DX w/MS began ...). While I can still see out of this eye, it has a blind spot and this grid picks it up!

I go to an optometrist that has some added education and degrees and I see him once a year. He checks my eyes out really good and told me that I have no sign of macular degeneration luckily. I can live with the blind spot. I just hope I don't get anymore of these blind episodes!

For several years my husband took what I call "eye vitamins" for his eyes which included lutein and zeaxanthin. He was going for an annual check-up until the shingles episode almost killed him. After that he gave up on the vitamins. He thought they helped him at one point in time. I am on the fence myself -- perhaps a good idea if you have the extra $ for them is my thought.

I know my dad used to take zinc, vitamin E and also vitamin C for his eyes. He lived until his mid-70s and when he passed away, the other eye was unaffected best I know.

You do have options but the person that stated there are no treatments for the dry form of macular degeneration is correct (unless you decide to try the vitamins). The wet form is far more dangerous but there are treatments as has been pointed out. Some people develop the dry form and never develop the wet form and vice-versa.

In my husband's case, he had the wet form from day #1.

There are some things you can do that will help.

If you smoke tobacco, STOP. It can cause macular degeneration to progress much faster. I don't know if you smoke or not but my husband's late sister smoked and drank and when she died she was basally blind as there wasn't much they could do for her. She lived to be 85 I believe it was.

As for the vitamin thing, I'd suggest doing a bit of research on which vitamins to take. Bausch & Lomb makes "PreserVision" which I know some people take but we found it was better to concoct our own formula that was more powerful and cheaper too.

I bought vitamins from http://www.botanicchoice.com/ for years.

I'd wait until they had a sale and would stock up on them. This is the specific brand of vitamins I was buying from them if you are interested:

http://www.botanicchoice.com/vision-health-lutein/Opti-Gold-Vision-Eye-Health-Supplement-30-capsules-per-bottle.axd

More about things that can damage your eyes:

Why are your eyes at risk, every day? Just take a look at how many things can harm your eyes...

Age
Smog
Too much sugar
Nutritional deficiencies
High blood pressure
UV Rays
Cigarette smoke
High fat intake
Blue light
Poor diet
High LDL cholesterol
Air toxins
Chemicals
Lack of exercise
Alcohol consumption
Excessive sunlight

Best of luck you and I am glad to know that you keep a check on your eyes via the Amsler grid and maybe vitamins can help (can't hurt is how we looked at it). Also, DO invest in a decent pair of sun glasses if you have not done so already, as they protect your eyes which is a simple enough thing that you can do as well that is imperative IMO. again ...

Best to you and yours.

I don't know much about macular degeneration, but I hope your prognosis is good.

I can't blame you for panicking; that's what I did when I was diagnosed with wet AMD in early 2011. Before I go any further, I am still reading, driving, and doing crossword puzzles. And I am thoroughly grateful.

Because they can do something to control this condition these days. What they can do is inject one (at a time) of several drugs directly into the eyeball. This procedure is done in the office. One of the drugs is called Avastin, and another is called EYELEA. Avastin costs about $50./shot, and EYELEA costs $2,000/shot. But when Avastin was no longer working for me, I discovered that there are several charitable foundations who subsidize very expensive, but necessary, drugs.

Go see the specialist your eye doctor refers you to. Look one up on the internet. My group are called "retina vitreus" specialists, and there are several conditions these folks specialize in. No specialist can cure this condition right now, that I've heard of, but the symptoms can be controlled.

Also, from what you say above, when you married, you did not pick a lemon in the garden of love. As soon as you find out how much your treatment will cost, start scheduling a trip to Paris. It's been many years since I was there, and the Eiffel Tower is nifty, but I remember just as fondly the hot chocolate we got at a nearby cafe.

Here's another hug. I've been living in a state of suppressed panic since 2011, and it's only made me a little stranger than I already was. Here's another hug, and go see a specialist.

When we go back in March I will see him in Chicago. Not that I don't trust the ones here but I want another opinion and someone who will talk to me about options. This guy just kind of walked in, said I had it and walked out.

to ask around among friends and acquaintances about people who have the same condition, who they're seeing, how they like them. Doctors are scientists, and view the body as an intricate machine, not necessarily a living breathing person with a book addiction. You should try to find a doctor who can and will talk to you: about your prognosis, about his experience with the condition, about anything you want to talk about. Be stubborn. Polite but stubborn. It's your life, and your doctor is supposed to be on your side. Good luck!!

renate downthread reminds me that there is a vitamin compound that has proven in actual tests to support eye health, including this condition. The formula is called AREDS. The Bosch & Lomb version is called Preservision. I buy the store brand that sits next to the brand name on the same shelf and costs less. Recommended for me in 2011. Has scientific credentials. It's a vitamin--can't hurt, might help.

A friend of ours who is a medical researcher told me they were looking at Billberry and Safron supplements as well, I went to the health food store last night and got some of those supplements, it can't hurt right?

That may be my fate, as well. I told my body it had until I hit 60 (last September) to acquire all of the family illnesses (diabetes, hashimoto's hypothyroiditis, and breast cancer all in one year).

I suspect it may not listen though - and macular degeneration is the one that is left hanging out there. My mother was diagnosed just a few years ago (and her mother had it as well).

Hang in there.

Sending a big "Jedi hug" your way.

You can start exploring all the many ways of coping with this challenge (and there are, indeed, some very good ones) later. For now, gather friends and family around you and let those loving connections help the anxiety and sorrow.

supportively,
Bright

There are treatments for the wet kind, so perhaps that is what you have, since you alluded to them. None for the dry kind, sorry to say.

My mother in her early 80s had injections in the eyeball (not fun) for the wet kind, which were wonderfully effective. Unfortunately in her mid 80s the dry kind has now taken over and she reads books on a tablet because she can really enlarge the print.

Good luck.

depending on the type you can stop it but you can not recover all that was lost while you ponder

that is what happened to my mom...make that appt today

When she got a Kindle, it made a world of difference.

I'm so sorry.

I'm very glad you can see mostly fine right now--and that there are treatments, thank goodness! So maybe you can slow its progression way down. Please forgive me if the last thing you want to deal with is advice, because if it were me I would just be in shock right now (I'm a big reader too) and I wouldn't want to deal with any extra information, but just in case you might be interested, dietary changes can help slow it down:

http://www.allaboutvision.com/conditions/amd-prevention.htm
(I suspect the reason they mention Centrum Silver as a multivitamin is not because it's an awesome multivitamin but because it doesn't contain iron; people of a certain age need less iron, and an excess of it counteracts the effects of antioxidants)

http://www.mayoclinic.org/healthy-lifestyle/nutrition-and-healthy-eating/expert-blog/nutritions-role-in-age-related-macular-degeneration%20/bgp-20151832

If you prefer scientific articles:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5244028/#sec5title

A Mediterranean diet can reduce the risk of its progressing to advanced macular degeneration:
http://ajcn.nutrition.org/content/102/5/1196.long

It looks like you might want to get a supplement that's especially designed for people with macular degeneration, since according to this study too much beta-carotene reduced the effectiveness of lutein and zeaxanthin (they compete for absorption):
https://nei.nih.gov/news/pressreleases/050513

I wish you the very very best of luck. I'm sending a for you and a for your sweet husband.

❤❤❤❤❤❤❤❤

I'm hoping for the best for you, and for the best medical treatment for you. Hang on to that husband. He sounds like one of the best ones!

It really helps.

i know there is so much going on in the whole medical world, including genetics. i am sure it will have a different path than your father's. seems to be moving at the speed of light.

and beyond that, digital sight is around the corner.

and there are lots of ways to get books. my bil used to read for a books on tape program through their public radio system, i think. i imagine there is a brazillion times that out there now.


i have a kid who is hoping for a miracle from the geneticist she is going to finally see.
hopin is all you can do.
hang tight.

My wife was diagnosed with it 3 years ago. She takes a combination of vitamins and so far the progress has been arrested.

Do you listen to audiobooks and podcasts? I've had to limit the amount of reading I do the last couple if years and find that listening to them helps.

Hug and more hugs--I hope for only the best of outcomes for you

known as Stargardt disease. He had a sudden loss of vision when he was in 3rd grade. Fortunately, his was the kind that stabilized.
He sees with his peripheral vision. He's now 26.

He was always a reader--and still is. In fact, he's a third year graduate student at Yale School of Drama. He never let losing his
sight get in the way of doing something (well, he can't drive) even though he's legally blind. He has traveled on his own--and lived
in Berlin for 10 months by himself, too (he was a German major in college)--on a Fulbright scholarship. He's managed to do a lot
of things by himself even though his sight is 20/200.

There are all sorts of low vision devices that are really cool. Plus, of course you can enlarge print on screens.

I hope you are able to start putting aside some funds to get to Paris. It is a beautiful city.

I am sorry your son has had to endure this for so long, but it sounds like he is a fighter who has learned very well how to manage. That is what I am hoping for.

We are saving, have been for a while, hope to go next year if all works out as planned. My husband says sooner .

...are an incredible gift for people with failing sight, and I hope they can serve you a long long time.

Courage.

Aloha no!
My good friend with macular degeneration has found something similar to this kind of thing very useful for reading. It's a jewelers magnifier. Some of them have light too. The sellers can tell you more. Not very expensive!
http://www.kassoy.com/Magnifiers/Sight-Booster-Deluxe-Magnifier.asp

Sending you good energy and cheer and ten hopes for modern medicine to assist!

That's terrible, and I feel for you.

Over the last year my vision became very wavy in my right eye and slightly wavy in my left. I went to an optometrist in January and she told me that I had MD and recommended that I make an appt with a specialist.
I've been putting off making the appt after reading about painful shots in the eyes to treat MD.

I read that a vegetarian diets help prevent MD, so I've changed my diet to vegetarian and take eye vitamins daily as well. I'm also faithfully wearing sunglasses now too. I hope it helps slow down the MD progression, because I refuse to get shots in my eyes.

Hugs to you.

I spent last night talking with friends and family. I also made a plan of action to help me feel like I am doing something rather than having a pity party. There is a good doctor a friend knows in Chicago and I'm going home in a few weeks so I will see him then.

Thank you for all your love and support. Plus thanks to those of you who shared your stories and helpful suggestions. I think after I left his office I felt lost, scared and fearful of losing the one sense I always feared losing. Now I feel there is some hope for me.

Hugs and hearts to all of you!

I'm so sorry to learn this about you, and I appreciate your openness and honesty in discussing this subject.

I hope the "new treatments" will be of great benefit to you. Sounds like you have a good support system in place (i.e., that fabulous husband!) and that is an important thing to have.

We're here whenever you need us!

No matter what happens, don't let it get you down. Modern medicine is amazing.

if you need support

sending loving, healing thoughts. there are new treatments out there, hoping for you!!

All of these messages, and the hearts have gotten me through the past couple of days. Husband is fabulous as usual and I will be home in 4 weeks so I will have my family.

I will keep everyone posted as this goes along.

Thank you again.

He actually talks to new patients before they come to his office. I had faxed my records to his office last week so I could an appointment.

He was fabulous. He said I have a real problem with my left eye, but my right appears fine at this time. He said not to panic, there are lots of options available and a lot of research being done (that made my husband the scientist very happy).

I see him in 4 weeks! YEA~!

What joy and relief you must be feeling. Your doctor sounds terrific. Wishing you the best of luck and successful treatment.