My Mother's Life with Wet Macular Degeneration and How I Am Preparing

by Sharon Houston
(Pink Hill, NC, USA)

My mother was 72 when she first experienced the horror of age related macular degeneration (AMD).


At that time, about 15, years ago, treatments involved heavy use of laser. She was left with very little peripheral vision in both eyes, although one was a little better than the other.

We obtained everything that we could learn from the professionals and from research that would help her. We equipped her living space in any way that would help, bought low vision equipment, including an optical enlarger for reading, kitchen and general living accessories that would help, books on tape, visited a low vision expert, etc.

She also took more vitamins especially formulated for vision. It was a terrible experience watching my mother, who had always helped so many people, struggle to maintain her existence with disabling AMD. She was an amazing person and did not give up.

Now, since both my parents had AMD (my father had the dry kind), I at the age of 65 am, and have been, doing everything I can to help prevent this disease.

I take several "eye" vitamins recommended by my doctor, try to eat nutritious foods including lots of greens, have frequent checkups, stay current on information about AMD, use the Amsler grid frequently, etc.

I look forward to the day when a cure will be found for this disease that affects so many, and I am so thankful for the continuing research that will bring about this cure.

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My Mother's Experience with Wet Macular Degeneration

by Catherine Tota
(Howell, N.J.)

My Mother was diagnosed with wet macular degeneration about 10 years ago, at age 84.

She first received laser treatments to stop the bleeding. After several years we moved and went to a new Retina Center. The bleeding started again and she has been receiving injections in her eye. The bleeding has almost stopped but now we're told the retina is thinning out.

She has taken special vitamins, used all sorts of low vision gadgets but she is now 90% without sight, which is cloudy and distorted.

We are now trying to decide whether to continue with the injections, as she hates getting them, especially since she sees no improvement. Aside from all her other problems this is the worst thing that could have happened to her.

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Oct 24, 2011
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Macular Degeneration Lens Implant
by: Anonymous

Hello Catherine,

I'm sorry about your Mother. Would you consider asking your doctor about the telescopic lens implant that the FDA approved for advanced AMD patients?

You can find more information about the implant here:

Macular Degeneration Implant


My Mother & Uncle both have macular degeneration and my Uncle's seems to have reached a point where injections aren't helping him any longer; I told him about the implant and he said he would ask his retina specialist.

Best of luck to you & your mom.

Oct 24, 2011
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Wondrful Your Mother Has You
by: Jean in Boston

Hi Catherine --

Thanks for your posting.

What does the retinal specialist say about additional injections? If your mother's eyes are not responding to them, she is certainly right to ask why she should continue? What will happen if she does not? Maybe the 10% is worth preserving? Or maybe not?

Good luck. Jean


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My Mother and Wet Macular Degeneration

by Amy
(Oklahoma)

My mother had wet macular degeneration (AMD) in one eye but suddenly could not see out of her second eye - this happened the day before my father died.

Her good eye now has wet AMD. She lost my father and her ability to drive in 48 hours. With treatment, her eyesight has improved in the second eye. She is adjusting amazingly well. With some aids, she still reads, plays bridge, goes on walks, and has a full and fulfilling life.

I want to add that your website has been very helpful to my sister and myself (Mom is not a computer person). We receive the newsletter and point each other to important articles. Thank you for the thoughtful, helpful, informative, and positive information that you provide.

REPLY

Thanks, Amy, for your post. It is important for other readers to “hear” that your mother “has a full
and fulfilling life” despite some very severe and sudden losses. They key word is “adjusting.”
Besides the driving, she is doing things she enjoys, such as reading, playing bridge and going for walks - with aids. If you have time share with us one, two or three of her favorite macular degeneration aids and how they have helped her.

Here’s a list of macular degeneration visual aids:

Visual Aids for Macular Degeneration

Kind Regards,

Leslie Degner, RN, BSN

Better Health for Better Vision

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Nov 06, 2011
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Macular Degeneration Aids
by: Amy

Hi Leslie,

Mom has found several reading aids useful and chooses the one that best suits her needs for each day - on bright days, she reads with natural light using special glasses that a low vision specialist fitted her with.

When more help is needed, she has several options - a lamp with full spectrum lighting (but I do worry because it has blue light as part of the full spectrum - should we have chosen a different lamp?), a Kindle DX (with type adjusted to be larger), and books on tape when her eyes are particularly tired.

She has found the grocery store with its flourescent lighting hard and uses sunglasses that fit over her glasses and have a yellow tint.

We've found that exploring options is key. We have also learned to restrain ourselves from getting excited about the neatest looking gadget to us and let her choose what is most comfortable for her.

By the way, I also don't mean to rate my own post but didn't have the option to give myself no rating. So - I decided to give myself a 5 :-)


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My Mother and Macular Degeneration

by Jodi O'Shea-Walker
(Denton, TX )


Happy birthday to my mom...she turned eighty-three yesterday. I thank God she is still so healthy, energetic, even feisty.

She lives alone with her beloved rescue dogs...for now. However, seven years ago she was diagnosed with dry macular degeneration and her sight continues to deteriorate. Mom loves to fuss in her gardens, but only on bright sunny days now, because she can't see the errant hose or freshly dug hole and if she were to fall...

My mother was never one to feel sorry for herself, to discuss health issues, and never to whine. So, she deals with this deplorable disease--we closely follow any reseach, check out any new visual aids, and pray.

Jodi O'Shea-Walker
www.joellewildrose@aol.com

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Oct 22, 2011
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Like Jodi's Mother - Wet Macular Degeneration
by: Jean in Boston

Like Jodi's mother, I live alone -- but with only one rescue dog. And I'm only 72, a bit younger than she is.

I have wet AMD in both eyes. After many Lucentis injections, one eye is 20/30; the other is too scarred to respond.

I am eager to know how your mother manages on her own. Can she still drive and do other tasks?

Many thanks for your posting.

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My Mom - Just Diagnosed with Macular Degeneration

by Carrie
(San Antonio, TX)

My Mom was just diagnosed with AMD in both eyes. It is dry. She is taking it quite well but she's the kind of person who prefers to not think about medical worries unless she has to.

I am more of a worrier and I also have to be able to make some life decisions because I will most likely be her primary care giver if she needs one. I don't want to leave the state for a new job only to find that she needs me at home.

No one will give us any sort of timeline. The doctor even said she may never lose her sight. So it's a very hard position to be in. I really want to have some sense of a timeline. So, I'm on here trying to see what has happened to others. How long before she won't be able to drive? That's probably the biggest question. Will she need a full time care giver?

REPLY

Hi Carrie,

Thanks for sharing your concerns as a possible future caregiver. Unfortunately, at this time the ability to predict the progression of this retinal condition isn't possible. As you can see from reading stories shared by other patients - progression is as varied as individuals.

Macular Degeneration Stories

You may find this interview by a caregiver of someone with macular degeneration helpful as well:
Help for Caregivers

Kind Regards,

Leslie Degner, RN, BSN

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Aug 13, 2013
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Thanks
by: Carrie

thanks Ronnie and Dr. Jared. The article is great.

Aug 10, 2013
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ARMD does not mean their is no hope!
by: Dr. Jared Cooper

Hello my name is Dr. Jared Cooper, I am a Low Vision Optometrist specializing in the visual treatment of those suffering from macular degeneration.

If you are frightened for your parents then you are not alone. I heard this so often that I actually wrote an article specifically for the children of parents diagnosed with the disease.

Please feel free to read it the article, I am sure the information will help you be better suited to help your loved ones. Feel free to contact me if you have any questions.

Dr. Jared Cooper

Cut and paste the Article onto your address Bar:
http://www.drjaredcooper.com/what-children-of-the-newly-diagnosed-need-to-know-about-macular-degeneration/

REPLY

Thanks Dr. Cooper - great article for adult children of those with AMD.

Leslie Degner, RN, BSN

Apr 30, 2013
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Driving and Macular Degeneration
by: Ronnie

Hi Carrie,

I just wanted to address your driving concerns for your Mom. My Mother's eye doctor never told her she should stop driving; her biggest challenge as far as seeing is reading small print.

She never liked driving, so she stopped on her own about 2 years ago, however, it was more due to the fact that she was diagnosed with cancer (which had nothing to do with her eyes).

She's been through a lot (surgery, radiation, chemo), but she's come through it and doing quite well. If she wanted to, she could drive (at 84 years of age), but she chooses not to.

I know you're worried, I was the same when my Mom was first diagnosed, fearing the worst. Had I known how well she would do and how slow the AMD would progress, I wouldn't have been so upset at first. Again, good luck to you and your Mom.

Apr 29, 2013
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Thanks
by: Carrie

Thanks everyone for your feedback and just being here. I keep hearing really encouraging stories about people able to do almost everything the same for many years.

Still worried about her driving ability but I will stop freaking out for now. She's taking the supplements and has her Amsler grid on the refrigerator.

Apr 27, 2013
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My Mom Also Has AMD
by: Anonymous

Hi Carrie,

My Mom was diagnosed with dry AMD in both eyes 20 years ago; she's now 84 and doing quite well and living on her own.

While her AMD has progressed, she can still see okay; her biggest challenge is reading small print for which she uses a lighted magnifying glass.

A few years ago her left eye became wet and she received several injections which were successful. In fact, her left eye has remained dry for years.

Her retina specialist was very impressed and said that wet AMD is a progressive disease and needs constant injections, but fortunately, she is an exception. She doesn't see as well out of her left eye as she does her right.

She takes supplements which I recommend for your Mom which may help slow down the progression, specifically Zeaxanthin and Lutein (Costco has a good product), and you might look into Saffron as studies have shown it is beneficial as well.

Your Mom should check her eyesight daily with the Amsler Grid and if she notices any changes (which could indicate the AMD has gone from dry to wet), she should call her ophthalmologist immediately. I wish you and your Mom all the best.

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My Mother's Journey with Dry AMD

by Sue
(Middletown, NY)

Hello to Everyone.

This is an excellent site with great information that explains things well. My mother is 87 yrs. old and was diagnosed with the dry form of MD at the age of 50.

She and my father lived a charmed life of golf, bridge, shows, cruises, and vacations that anyone would envy. For all these years, MD has kept a very low profile, with only a slight hint of its presence in my mother's eyes.

She drove all over, and went anywhere she wanted - when she wanted. She cooked a steady diet of vegetables, meat, fish, fruit and good homemade desserts. Both she and my father thrived on her cooking for their retirement years, and my father lived to the ripe old age of 95.

At the age of 86, my mother was out driving one day and she couldn't see the lines on the road anymore. She wasn't too far from home, and she was scared enough to turn around and go home. She gave up her keys that day.

No resistance and thank goodness enough sense to know when her vision had changed for the worse. She lived with MD for 36 yrs. with little or no trouble. Then out of the blue one day, it came out into the open.

The doctors diagnosed her with Geographic Atrophy - the last stage of MD (dry form). She moved down here with us after my dad passed last year. She has trouble reading most things and uses some hand-held devices to help her out, but it's still a struggle.

She bought a computer made especially for people with low-vision, but I don't think she uses it. It has a great magnifier on it that drops down, but she can't read the words. She doesn't say too much about it. Once a week, I stop in to read and answer her e-mails.

I take her shopping and I have to pick out most of the food for her as she can't read which is the broccoli and which is the spinach for example. (The frozen kind anyway.) She can out-walk anyone because she doesn't have arthritis, but she has to walk very deliberately because she can't see the pavement ahead of her due to poor depth perception.

We have trained with specialists from a Low-Vision Non-Profit Group and they taught her how to use a cane when she walks in the road around our development, but she doesn't ever use it. She is too proud and doesn't want the neighbors to know she can't see well. She never takes it with us when we go shopping.

She gets around her house well and still cooks for herself - always the best vegetables that help with MD. The nice weather is here in the NE now, but she hasn't walked around outside in the development yet. She has a treadmill, and she uses that to keep in shape. I wonder if her vision has gotten a little worse than last year, and she worries about falling.

She doesn't offer much, but I have to read between the lines. She is hoping that they come out with a cure for MD while she can still take advantage of gaining some sight back. She's healthy other than this major problem. She's coping, but is anxious and is always looking for the next snake oil salesman to claim they have found a cure for MD.

She wants to go see a doctor in a neighboring state who is making claims. I had to tell her that no one has found a cure yet, and if this doctor is curing people, then why have we not seen it on every news station there is? She paused and had to agree with me. I had to tell her to stop buying so many supplements, because she could be doing more harm than good. We see her retina specialist in June. I asked her to make a list of questions she has for him.

We will find out what he recommends for this stage of MD. She had MD for 36 yrs. and hardly noticed it. It's only this last year that her vision has taken a turn. I know if she could sit down and write anything about her life with MD, she would explain the hardship she endures because she can't do the things she used to do. And her first question would be - Is there a cure for this yet??

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Jun 19, 2013
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My Mother's Journey with Dry AMD
by: Sue

Hi Ronnie! I just noticed your comment. Your mother sounds like a very strong woman too. I would hope I could be as brave as my mother and your mother. For my mother to be somewhat dependent on me is something I though I would never see. She tries to keep busy with her talking books, exercise on her treadmill, movies, and we try to get out to lunch every so often. Her life has changed so much, but she is coping. She used to play bridge, but she can't see the cards anymore - even with bright light. We didn't get to the retina specialist as planned last month (due to the doctor's agenda, not ours), but we will go in July. I have some questions for him such as nutritional guidelines, and supplements for this stage of the MD. She is fighting to maintain the eyesight she has so valiantly.

Jun 05, 2013
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Mother with Wet AMD
by: Ronnie

Hi Sue,

Your Mom sounds like an amazing woman; I'm sorry for the difficulties she's been having with AMD this past year. My Mom, at age 84, also has AMD; I believe she was diagnosed around age 65. It first started to give her problems around 7 years ago after her husband died.

Her left eye started to leak which required several injections. They were very effective in stopping the leaking, in fact, her left eye has not leaked since then. Her retina specialist said that he never sees that happen, as wet AMD is a progressive disease that needs to be controlled, so he's very surprised at how well she's done.

My Mother can see better out of her right eye, but the vision out of her left eye is quite bad. She requires vision aids to read, which she can still do if the print is large enough and there is enough light.

She didn't have to give up driving from vision loss, but she's never been a fan of driving and gave it up very willingly. My husband & I moved to the development next to hers so I'm able to drive her to all her doctors' appointments.

You mentioned that your Mom takes a lot of supplements; I've read that some may be very helpful for AMD, such as Lutein & Zeaxanthin; I've also read that Saffron supplements may help restore some eyesight. There is a doctor in a nearby town who claims to help reverse AMD with acupuncture, which I've never heard that being done before.

But, unlike your Mother, mine does not want to try new things that have been unproven. My Mom went through surgery, chemotherapy and radiation for stomach cancer 2 years ago, and is still recovering from the effects of the treatment and I am amazed at how well she's doing for everything she's been through.

Thank you for posting your Mom's story. She sounds like a very strong woman. Good luck to both of you and the rest of your family.

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