macular degeneration, macular, diagnosis nutrition – My Macular Degeneration Journey/Journal

Tag: nutrition

What if I’m NOT a good candidate to take the AREDS2 supplement? What should I be doing?

Question: What if I’m NOT a good candidate to take the AREDS2 supplement? What should I be doing?

Who is NOT a good candidate to take the AREDS2 supplement? That would be those who do not have AMD (family history or not) or have early AMD. That’s because they’ve not been tested for those with no AMD and only tested in the first AREDS study for those with early AMD where they showed no benefit.

Question: “What if I’m NOT a good candidate to take the AREDS2 supplement? What should I be doing?”

Who is NOT a good candidate to take the AREDS2 supplement? That would be those who do not have AMD (family history or not) or have early AMD. That’s because the AREDS2 formulation has not been tested for those with no AMD and only tested in the first AREDS study for those with early AMD where they showed no benefit.

1. There’s lots of research that says that the best sources of important nutrients are from food. Click here for a great article that covers each aspect of an Anti-AMD Diet including why the Mediterranean way of eating, flavonoids found in oranges and carotenoids like lutein and zeaxanthin and anti-inflammatories are beneficial.

2. Click here for a good video by an the eye specialist who covers the important aspects of an eye healthy diet including fish like salmon 2-3 times a week and a cup of spinach or other dark leafy vegetable a day, nuts regularly and keeping the carbs in the low range of the Glycemic Index (GI). His bottom line: If you don’t eat healthy, then consider supplements but always choose good foods first.

3. Professor John Nolan, Director of the Nutrition Research Centre Ireland, has been studying carotenoids for 20 years. His research found that we have 3 carotenoids in our macula (lutein, zeaxanthin, and meso-zeaxanthin; LMZ) in a clump of cells called macular pigment. Macular Pigment protects the rods and cones, our photoreceptors, from blue light, and also supplies antioxidants to them. Carotenoids come strictly from plants especially leafy green veggies and if we don’t eat them, we don’t have any macular pigment! We need a good and constant supply of LMZ. He found that at least 15% of the population is deficient in LMZ. He also found that although lutein comes from many foods, zeaxanthin is found in less foods, and meso-zeaxanthin only in fish skin and shellfish. Some people convert lutein to zeaxanthin and meso-zeaxanthin, but not everyone so supplementation with LMZ is a safe way to be sure we’re getting the LMZ we need for healthy pigment. Since the eye are part of the brain, what’s good for the eyes is good for the brain.

To learn about Dr. Nolan’s research, I recommend that that you listen to the September 3rd, 2021, podcast from BroadEye titled ‘Age-related Macular Degeneration, Supplementation, and Key Research Findings in the Field of Ocular Nutrition – Prof. John Nolan.’

What should I be eating or not eating to hopefully slow the progression of AMD?

Question: what should I be eating or not eating to hopefully slow the progression of AMD?

Answer: Research showed that those who followed a Mediterranean diet had a 41% reduced rate of development and progression to late AMD. You can read about the research by going to ‘Mediterranean Diet and Incidence of Advanced Age-Related Macular Degeneration: The EYE-RISK Consortium.’ 

Does that apply to those who already have AMD?
This is from the AAO (American Academy of Ophthalmology) ‘New Study Confirms Mediterranean Diet Prevents a Leading Cause of Blindness’:
“SAN FRANCISCO – September 30, 2018 – Evidence is mounting that a poor diet plays an important role in the development of age-related macular degeneration (AMD), a leading cause of blindness in the United States. A large collaboration of researchers from the European Union investigating the connection between genes and lifestyle on the development of AMD has found that people who adhered to a Mediterranean diet cut their risk of late-stage AMD by 41 percent. This research expands on previous studies and suggests that such a diet is beneficial for everyone, whether you already have the disease or are at risk of developing it. “
The Mediterranean way of eating has also been shown to be beneficial for our hearts and our brains.
Is eating this way the ONLY thing I need to do to slow my progression?
When we talk about diet, we are not trying to say that it’s the ‘magic wand’ to managing AMD. It’s one factor in a list of other lifestyle factors that are important.
Don’t beat yourself up if your diet hasn’t been healthy or healthy enough – diet alone did NOT cause your AMD! The good news is that it’s never too late to make changes. Just be patient, it takes the body time to adjust. You’ll find more information about the many risk factors for the development and progression of AMD in ‘Did I do something? Will I get it if Dad had it? What can I do to slow it down?
What specifically is the Mediterranean Diet for AMD?
One thing we need to know is what EXACTLY is a Mediterranean diet for managing AMD? Is it the Mediterranean way of eating with lots of olive oil and pasta? Not exactly.
There are 2 basic components: 1) foods to include and 2) foods to avoid. The article ‘Eating for Your Eyes: Mediterranean Diet & Macular Degeneration’ is the best one I’ve found. Not only does it tell us what to include and what to avoid, it tells us how much we should be eating in each category. [This site has disappeared, but luckily I copied it! I am trying to track down the optometrist who created on the site optomeyeslife].
The articles says, “Are you interested in trying the Mediterranean diet? These tips will help you get started.”
  1. Eat more fruits and vegetables. Aim for at least 6 to 7 servings each day (2.5 cups of vegetables and 2 cups of fruit daily).
  2. Opt for whole grains. Aim for 5 to 6 servings each day. Switch to whole-grain bread, cereal and pasta. Whole grains include couscous, bulgur wheat, and brown or wild rice.
  3. Use healthy fats. Use olive oil instead of butter or margarine. Avoid peanut, safflower, corn, and soybean oils.
  4. Spice it up. Use garlic, herbs, and spices to season your meals and boost flavor.
  5. Eat seafood weekly. Aim for one to two servings per week.
  6. Limit red meat and poultry to one serving or less per week. If you eat meat, choose lean cuts and keep portions small.
  7. Eat dairy in moderation. Eat low-fat Greek or plain yogurt and small amounts of a variety of cheeses.

GO BACK TO FREQUENTLY ASKED QUESTIONS

What Can I Do to Slow the Progression of AMD?

There ARE things you can do to battle AMD. These are the recommendations backed by research. Since we don’t yet know what causes AMD in any individual, we don’t know which of these are more effective than others. We do know that there are many factors that influence the development and progression.

I have included a few self-help tips, too.

These are NOT in any order except for number 1.

Remain hopeful!! There is a lot in the pipeline–>http://www.retina-specialist.com/…/pipeline-update-whats-ex…

1. Don’t smoke. #4 and many others.

2. Risk of AMD is 50-70% genetic, the rest is age and lifestyle factors below. High genetic risk of AMD? Lifestyle factors such as nrs. 3, 4, 5, 6, 7, 11 are important. #4

3. Follow the Mediterranean diet, on the low carb side, esp. low sugar. #4 #1 and others

4. As part of the Mediterranean diet, eat lots of colorful veggies, esp green and leafy which have important carotenoids in them. #4 #1 and others

5. Omega-3 supplementation? If one’s diet is rich in healthy oils, some nuts, and fish such as wild caught salmon, some say supplementation is not necessary. #4 #1 and others

6. Moderate aerobic exercise. #1 and others

7. Drink enough water to stay hydrated. #1 and others

8. Reduce stress. Although it is common to have depression & anxiety when you get the diagnosis (and can recur as you do your research, please seek help if you cannot move past this–especially if you have thoughts of harming yourself. #3 #16

9. Wear sunglasses when outside: polarized, blue block. #9

10. Working on the computer – use built-in screen colors to reduce blue light. There’s no firm evidence that electronic devices give off enough blue light to harm our eyes. It does affect our sleep which is important. #17

11. Maintain overall good health including maintaining a normal BMI, normal blood pressure, normal cholesterol. #4 and others

12. Moderate AMD or wet AMD in one eye but not the other? Take AREDS2 with zinc if you know you are NOT zinc sensitive (genetic test). If you don’t know or know that you ARE zinc sensitive, AREDS2 with no zinc. #2

13. Use an Amsler Grid or other monitoring systems. #5 #7 #8

14. If by using aids in nr. 13 & symptoms indicate that dry converted to wet, get treated with anti-VEGF as soon as possible. The earlier the treatment, the better the prognosis. #6

15. Have your eyes examined regularly (every 6 months advised) by a retinal specialist who is an ophthalmologist who specializes in diseases of the retina; write down your questions and take them to your next visit. #12

16. TIP: If you have vision impairment, find a low vision specialist who is an optometrist who specializes in evaluating vision and recommending low vision aids. There are also organizations and specialists who can advise you as to how to adapt your home or workplace. #13

17. TIP: Make sure you have enough light and provide contrast since AMD decreases the ability to detect contrast and increases the need for light.

18. TIP: Don’t drive if you are not safe to do so, especially those who have blind spots. You may not realize that you HAVE blind spots that could block your ability to see other cars or things along the road. #10

References

#1 Mediterranean diet reduces risk for AMD–>http://www.aoa.org/news/clinical-eye-care/mediterranean-diet

# 2 AREDS/AREDS2: A Guide–>https://mymacularjournal.com/home/guide

#3 Can psychological stress cause vision loss?–>https://m.medicalxpress.com/…/2018-06-psychological-stress-…

#4 Macular Degeneration Epidemiology: Nature-Nurture, Lifestyle Factors, Genetic Risk, and Gene-Environment Interactions – The Weisenfeld Award Lecture–>https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5749242/

#5 ForeseeHome–>https://www.foreseehome.com/

#6 VIDEO: Registry shows early detection of wet AMD helps patients maintain better vision–>https://www.healio.com/…/video-registry-shows-early-detecti…

#7 KeepSight monitoring tools->http://internationalmacularandretinalfoundation.org/keepsi…/

#8 How to Use the Amsler Grid–>https://www.brightfocus.org/mac…/article/how-use-amsler-grid

#9 How to Choose Sunglasses–>http://www.webrn-maculardegeneration.com/sunglasses-and-mac…

#10 Mailbox or Child with self-test–https://mymacularjournal.com/home/mailbox-child

#11 Macular Degeneration: Frequently Asked Questions–>https://www.brightfocus.org/…/macular-frequently-asked-ques…

#12 Ten Questions to Ask Your Doctor about Macular Degeneration–>https://www.macular.org/ten-questions-ask-your-doctor

#13 How Low Vision Services Can Help You–>https://www.brightfocus.org/…/how-low-vision-services-can-h…

#14 Low Vision Rehabilitation and Low Vision Aids–>https://www.aao.org/…/diseas…/low-vision-aids-rehabilitation

#15 Reflecting on ‘grief’ after losing my vision–>http://www.blindintuition.com/reflecting-on-grief/

#16 Highlight: Is depression following the diagnosis of AMD normal?–>https://mymacularjournal.com/archives/5923

#17 Blue light hastens vision loss? ‘Not so fast,’ —>http://www.aoa.org/news/clinical-eye-care/blue-light-transforms-molecules-?refer=rss

My Two Cents

Lin/Linda here.

My 2 cents which means ‘my opinion’.

This is my 4th year doing research about macular degeneration (mostly AMD), working with Sue on the website & interacting with members here. It is really frustrating not to be able to say, “take 2 pills and everything will be fine.” After all, we have pills that virtually cure other diseases, right? Or there are lifestyle changes you can make and you won’t need the pills. For example, if you have high blood pressure, you can lose weight, exercise and eat a certain diet, and you won’t need the pills. We can sometimes have blood drawn and are told we don’t have enough of …. so we take more of …. (fill in the blanks; I’m thinking of Vitamin D levels for one).

Unfortunately, we are not yet there with AMD and similar types of macular degeneration and other retinal diseases.

I’m writing this because I’ve had people tell me to be honest but optimistic. It’s hard for me to balance those two sometimes! I’ll first be honest, and then I’ll be optimistic. I hope you know that I care for and respect you. Why else would I be here?

What do we hear?

We are told by others with the disease, by doctors or in articles on the Internet about nutrients that are treatments (AREDS2? Saffron? Turmeric?) or that eating leafy greens (how much, how often?) is a treatment. Some sources even tell us of cures! We search for people like us and ask, “did this help you?” People say, “I ate … and took … but my AMD got worse.” Or “I ate … and took … and my AMD got better.”

How do we know what to believe?

There are things that we know about AMD: it is a disease with many potential causes (we don’t yet know what they are for any individual) and many risk factors and that everyone has a different combination of them (I have a recent post listing all the ones we know about so you can see what yours are). Our genetics – which includes heredity but also other genetic factors – may have the most influence on some people but not all. We can’t control that. Another big risk factor is age which is another thing we can’t control, darn it. ::smile::

What can we control?

Don’t smoke; keep your weight, blood pressure and cholesterol normal; get moderate exercise; eat eye healthy foods especially if your diet has been poor. Some people with AMD can be helped by taking the AREDS/AREDS2 supplements but some cannot. Some can even be harmed by them we now know.

Remember that they are called ‘supplements’ because they are to SUPPLEMENT our diet, not to replace eating well.

Unfortunately, we cannot yet look at a person’s genes alone or blood or diet or use of supplements and say “yep, that’s it!! That’s what caused it for you. Now do this.”

A lifestyle

I hope that you see that dealing with your AMD is very much a self-help process with input from your own research, your doctors, Sue’s pages and this group. What I’m talking about is that you need to develop an overall plan – a lifestyle – for YOU which includes:
– managing your blood pressure, weight, and cholesterol.
– getting moderate exercise.
– eating an eye-healthy diet.
– working on keeping the stress as low as possible, and if you can’t eliminate it, you can learn to deal with it in positive ways.
– taking supplements IF they’ve been proven safe & effective.
– keeping an open mind about using the MANY low vision aids that are available when and if you need them. There are so many more of than in any time in history and more are being developed every day.
– accepting that you may have to learn different ways of doing the things you used to do. We have examples of people who did this and have created ‘new normal’ good lives (Sue is one).

Supplements

We do not discourage talking about supplements and procedures. We are doing it, too. You may think that we are trying to keep you from taking or doing something that will make a difference when we share the results of our research that often says that something hasn’t yet been proven to be safe and effective. Why would we hide helpful information? Sue & I have been volunteering our time for years. I am here every day of the week doing what I can. My life would be easier if I could say “Take this and do this.” ::smile::

If we can’t tell you what to do, we can at least help by using our experience with proper scientific research to keep you from doing something that could harm you.

I’m constantly looking at the news in the field with the expectation that one day I’ll be able to share with you the good news that there is something that really CAN help control and reverse the damage that’s been done. There’s research that is making great strides in both of those aspects of the disease.

Are there reasons to be optimistic?

You bet there is! If you are even just reading the headlines of the posts in our group, you will see reasons to be optimistic. I’m not talking just about ongoing research. I’m talking about posts and pages from people in the group and elsewhere who have the disease and who live good ‘new normal’ lives – even thrive – with vision loss.

What can I do NOW?

1. Keep a positive attitude and know that you are doing the best you can with what you and the experts know currently. We are learning more as time goes on and there is to learn ahead!

2. Work on creating a healthy lifestyle. If you are new to your diagnosis, putting your lifestyle plan together is a critical process that takes time, education, help and support. You may not be ready to start down this path yet. When you are, we are here to help you every step along the way.

3. Think about ways you can adapt your life, your home, your workplace using the many low vision aids available both electronic and non-electronic.

OK, I’m done…for now! ::grin:: Thanks for listening.

Written 2/2/2018. Revised 1/7/2019.

Next: Making Elmo Proud

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Highlight: What foods should I be eating for good eye health?

Nutrition for Good Eye Health – the Basics

Disclaimer

Eye Healthy Nutrients

Click here for a good place to start to learn about aspects of nutrition that have been recommended for good eye health.

 

<–Click on the photo for a larger image.

Click here for more details from AOA (American Optometic Association) about this infographic.

 

 

 

Click here for a printable grocery list.

 

 

 

 

 

 

Diet Plans for Good Eye Health

            • not listed in any particular order; we aren’t making any recommendations & we make no money on the sale of any of the products below.
            • Macular Degeneration Diet and Prevention Plan by Dr. Stuart Richer, OD, PhD, Ocular-Nutrition Laboratory in DVA Medical Center Eye Clinic, North Chicago, IL
            • Eyefoods has a diet plan that you can learn about in their book, on their website, Facebook page or blog
            • Eat For Your Sight Cookbook from the AMDF (American Macular Degeneration Foundation), the cookbook is available here or through amazon.com
            • Mediterranean Diet for eye health
            • Anti-inflammatory Diet
            • Cure AMD, proposed eating plan (based on ‘ancestral diet’) to prevent AMD and reverse it in its early stages.  I’ve corresponded with the author & expressed my concern about his use of the word ‘cure’.  He said he believes so strongly on his research that he could not use any other title.
      • Disclaimer:  We have a standard disclaimer that no one reads ::smile:: so I just want to remind you that we say in it:
        • Any information, books, products or any other materials at My Macular Degeneration  Journal/ey are not intended to treat, diagnose, cure or prevent any disease, disorder or health condition, and is provided for educational purposes only.
        • Always consult your doctor with eye health questions about your specific medical conditions and before starting any diet, exercise, or supplement program.

Go to the Top

I Am Not a Doctor

Commentary: Lin just sent me a post from someone in the Facebook group. She asked for my reactions. The person is claiming he completely reversed neovascular (wet) AMD with nutritional treatments. Here goes.

First the disclaimer. I am not a doctor. I am not a nutritionist. I am a woman with dry AMD who has tried to educate herself about her disorder. Therefore I do not, by any stretch of the imagination, have all of the answers. End of disclaimer.

That said, let me congratulate him on his greatly improved vision! I am glad he are doing well.

I know some of what he says is true. In general the diets of those in the developed world are atrocious. We should be eating many more fruits and vegetables, especially our leafy greens, than we do. The reason taking the AREDS/AREDS2 supplement works to slow the progression of the disease is probably our poor diets. If we ate well, the supplements would not be so needed. [Lin/Linda: I have to mention that there is some risk taking the AREDS or AREDS2 with 80mg zinc.  It can cause problems in the genitourinary tract but there is evidence that for people with certain genes, that high dose of zinc can cause their AMD to progress faster. Since not everyone has easy access to the genetic tests, there are supplements with no zinc or less zinc.  Check out this post for more information.]

Angiogenesis is the growth of new blood vessels. This is a hallmark of wet AMD. There is some evidence angiogenesis is part of the healing process and may be triggered by inflammation (Reiner O. Schlingemann in Role of Growth Factors and the Wound Healing Response in Age-Related Macular Degeneration). There is also evidence that retinal hypoxia (in English? Your retina is gasping for oxygen) is a trigger for angiogenesis and neovascular (wet) AMD. (Citation same guy. It is so nice not to have to follow APA format? [Lin/Linda: APA is the American Psychological Association and when you write something for them, you need to follow a very strict format for references to articles.]

That said, theoretically it is possible he hit upon a combination of nutrients that would reduce inflammation and increase oxygenation to his retina, thus somehow stopping the angiogenesis. Did this happen? No clue. I am just sort of a slightly-too-smart-for-my-own-good, visually impaired lady. (Gets me in a lot of trouble.) Is it possible? Sure. “There are more things in heaven and earth, Horatio, than are dreamt of in your philosophies.” (That is the bard, of course).

Now, it would be my supposition – again totally unfounded – he was not in advanced AMD and had not experienced much if any photoreceptor death i.e. geographic atrophy. Unfortunately from what I have been told dead is dead with those. They would not have come back.

That is pretty much my take on it. Again when it comes down to it, I know nothing but I have a helluva lot of opinions. Don’t believe me. Offer your opinions. What do you folks think? Continue reading “I Am Not a Doctor”

Taking Care of You

Morning. I have nothing until noon and I just slept until 8:30. Whoa. Must have needed it.

Which brings me to the topic for this page: a quick review on self-care. I forget and I even teach the stuff! I suspect you forget, too.

We were gone for nearly two weeks. Iceland meant new climate, new food, new routine, new time zone. These are all stressors. The human body was meant to cover the distance between here and there in five months, not five hours. Then I came home and was not at the top of my game for something important. More stress.

I am sure you know about you. Me, I show stress by not sleeping and sometimes I get a migraine. I had two last week. While migraines are not fun, they tell me something. I need to stop the nonsense and take care of myself! That means a big dose of PLEASE.

Off schedule, my husband and I both missed our meds a couple of times. I needed to take care of my physical illnesses by getting back on my meds on a regular basis. That meant being sure I took my meds right after brushing my teeth like always. Routine.

Eating properly had to happen which meant I had to – gasp! – cook. My big deficit is vegetables. For me, carbs and salt are basic food groups. I had to avoid that and provide myself with meat, potatoes and a vegetable or two or three.

Balanced nutrition was a must. We are what we eat….in that case, I’m popcorn!

Avoiding intoxicants has never been a problem for me but if you are the type to have a couple of beers or a few puffs to destress on a regular basis, you should stop. Not good for you.

I say that and then I turn around and say I took an OTC nighttime pain reliever to sleep. This is not an every night thing, however. I also used aromatherapy with a little Vicks Vaporub and did my square breathing.

Remember to sleep in a cool, dark room. Limit your screen time before bed. That is what the experts say.

Exercise has been royally screwed up this week because two of my rides had other obligations. Back into the groove tomorrow. In the meantime I had my husband take the Beastie Baby and me to the beach for our walk.

A good dose of nature is good for what ails you. Gently running water is great for providing a little dose of tranquility.

I admit, attention hog that my husband says I am (and I am. I love positive regard), I did have a few other mood boosters. My third job boss is coming half way to pick me up and take me up there. They have work for me. I may be pitiful but knowing I am wanted means a lot.

Then it turns out I did not do as abysmally in the photo contest as I thought I had. Out of three entries I had a second and an honorable mention! Yippee!!!!

To make matters better, my life-long friend the artist had three paintings in the associated art contest. She earned two firsts and a second! Taking photos of her paintings with their ribbons and hearing her reaction was the most fun of all! I “made (her) day!” , which was awesome.

Doing for others really does help you get over yourself.

Time to get ready for work. I will get to reading that article about increasing visual span this evening. Who knows? Might help. Continue reading “Taking Care of You”

I Have Macular Degeneration…Now What?

June 2023 There’s an announcement that since Sue has not written any new journal pages for some time, the site has been archived until we can decide if the work necessary to make sure all information is accurate and up-to-date can be made. In the meantime, you’ll get some pages ‘not found’ or ‘private’ until that decision has been made. The emphasis for several years has been on the Facebook group.

Where can I quickly find information about AMD?

One of the best resources available is from the Prevent Blindness organization’s website called Guide Me.  You answer a few questions and you will get a personalized guide with important aspects of AMD based on your answers:

Click here to go to Guide Me.

Click here to watch a 4-minute video that explains what AMD is, what causes it, and what can be done about it.

Click here for a good list of Frequently Asked Questions.

Click here to go to a great site maculardegeneration.net where you will find articles written by people with macular degeneration and caregivers. They also have a Facebook page.

What other websites are helpful?

Here are some of our favorites:

Click here to find out should I take the AREDS or AREDS2 supplements?

Click here for a video that covers important information about AMD

Click here for a description of dry vs. wet AMD (we are not recommending any products in this article, but be aware that the site may profit from some products they advertise.)

Click here for an explanation of the stages of AMD (we are not recommending any products in this article, but be aware that the site may profit from some products they advertise.)

Click here to read about what happens if you have AMD in only one eye

Click here for some answers to common questions about depression after diagnosis

Click here for an article about how vision rehabilitation helps prevent long-term depression

Click here for a very comprehensive page about wet AMD

Click here for a very comprehensive page about dry AMD

Click here for an article about how fast AMD progresses

Click here for 10 questions to ask your doctor

Click here to find a support group (I’ve been told that this site may not be up-to-date. Ask your eye specialist for a referral.)

Click here for eye-healthy foods including a Healthy Vision Grocery List (2/14/2022 site wasn’t formatting properly.) Click here to read the answer to the question ‘What should I be eating or not eating to hopefully slow the progression of my AMD?’

Click here to find out what vision changes/symptoms to look for (we are not recommending any products in this article, but be aware that the site may profit from some products they advertise.)

Click here to find out about the people who can help you (what are the differences between the types of eye doctors, do I need to see a specialist, etc)

Click here for tips on how to make the most of the vision you have (section toward the bottom of the page; lots of other good information on the whole page)

Click here for a FAQ (Frequently Asked Questions) from the Macular Disease Foundation Australia.

Click here for a FAQ (Frequently Asked Questions) from our Facebook group.

Where can I do more research?

You can do searches on the Internet – there is a LOT of information there.  We have done a lot of research and here’s how you can find it.

Click here to go to How to Navigate and Search Our Website.

Join our very active Facebook group Our Macular Degeneration Journey. There’s lots more information there as well as support whenever you need it.

How do I move around on the website?

Click here to go to How to Navigate and Search Our Website.

To find about more about me, about Sue, about our project, go to the menu at the top of the page.

Reviewed 02/14/2022

 

 

 

 

News: Sept. 12-13-14, 2016

These are the links shared in the Facebook group for these dates

News: Sept. 1-2, 2016

News: August 25-26, 2016

News: July 28-29, 2016

News: July 24-25, 2016

 

News: July 23, 2016

 

News: July 15, 2016

News: July 13, 2016

News: July 12, 2016

Caution against ‘stem cell tourism’

 

 

 

News: This week in AMD July 4th to July 10th, 2016

I know not all of you are in the Facebook group so I’m going to start posting some of the links that I share there.  I am going to start with posts from the past week and then I will try to post them each day.  To go to an article, click on the title. If you find any links that don’t work or don’t go to the correct place, please email me at light2sight5153@gmail.com.

I hope that this doesn’t discourage you from joining us on Facebook.  The advantage there is that we are discussing these articles and other things. We are learning from each other!

Resources

June 2023 There’s an announcement that since Sue has not written any new journal pages for some time, the site has been archived until we can decide if the work necessary to make sure all information is accurate and up-to-date can be made. In the meantime, you’ll get some pages ‘not found’ or ‘private’ until that decision has been made. The emphasis for several years has been on the Facebook group.

2/14/2022 Because of the rapid and constant growth of our Facebook group, I cannot keep this list updated.  I have a large amount of information available in the Facebook group in Guides which are like chapters in a book or lessons in a course. Plus, in 3 years, the amount of information in the posts and comments is quite substantial. I recommend that you join us there where you can get the information and the support to help you in your journey.  Thanks for understanding. Hope to see you there! Lin/Linda…
I’ve added some pages from that group that might be of interest to you.

Frequently Asked Questions

Click here for the list of Frequently Asked Questions from our Facebook group.

AREDS2-based Supplements

There are several pages on the site that explain what AREDS2 means and who the AREDS2-based products are for. Click here to go to a list of articles.

AREDS2-based Supplements With 0 or 25mg of Zinc

Click here for the list.

Navigating

There are a lot of links here.  I’ve set up this page so that when you click on a link (words that are underlined & in blue or green), a NEW tab will open in your browser and this page STAYS WHERE IT IS.  When you are done with the new page you opened, just close it.  You do NOT need to use the back option.  If you click on a link and the new page replaces this one, I’VE MADE A MISTAKE so please let me know by sending me an email at light2sight5153@gmail.com.  Let me know exactly which link or links do not open a new tab or window.

Errors: If you click on a link and you get a ‘page not found’ error, please let me know by sending me an email at light2sight5153@gmail.com.  Let me know exactly which link or links do not open a new tab or window.

Additions: If you have a link you’d like to add, please email at light2sight5153@gmail.com.

Topics-click below to move to a topic

Links We Like

  • Click here for a GREAT resource where you answer some simple questions and you get a customized guide based on your responses
  • Click here for a great glossary
  • Click here for Low Vision Resources: A List of Lists (such as 8 ways to slow AMD, 15 tips for family and friends, etc)
  • Videos
    • Click here for several videos
    • Click here for the UK Macular Society’s Say Hello to Mac
    • Click here for one that uses illustrations and animation (explains how wet AMD progresses and how the injections work)
  • Click here for a description of dry vs. wet AMD (we are not recommending any products in this article)
  • Click here for an article about depression after diagnosis
  • Click here for a very comprehensive page about wet AMD
  • Click here for a very comprehensive page about dry AMD
  • Click here for a FAQ (Frequently Asked Questions) that answers a long list of questions such as ‘will resting help my eyes?’, ‘Can I see for myself if my retina or macula shows any signs of damage before I have symptoms?’, ‘why don’t new eye glasses help?’, ‘what is meant by degeneration?’, ‘is a macular hole the same as macular degeneration’, ‘I have had dry MD for years. Does this mean I’m going to get wet MD too?’, ‘No one else in my family has MD. Why did I get it?’, ‘can drusen be treated?’, ‘I have changes on the Amsler Grid, does this mean I have MD’, ‘I have Wet MD but my Doctor says there is nothing he can do or no treatment available. Why is this?’
  • Click here for a short introduction to stems cells, what they are and how they can be used.

See what vision is like at the various stages of AMD

Click here to find ways to see simulations of what vision loss due to AMD is like at various stages.

Glossary

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Websites devoted to AMD and Other Forms of Macular Degeneration

listed in no particular order

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Websites containing information about AMD and Other Forms of Macular Degeneration

listed in no particular order

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Support

I’ve not been able to verify if these are kept up to date. Let me know if you find that they are not or if you have one  you’d like to add.

Message Boards including ones from
By postal mail

I don’t know if these are still accurate.

  • Association for Macular Diseases
    210 E. 64th Street
    New York, NY 10021
    (212) 605-3719
    – Offers education and information on macular disease through seminars, newsletters, and a hotline. Offers counseling to patients and their families.
  • Macular Degeneration International
    is now a part of Foundation Fighting Blindness
    Toll Free Helpline 1-800-683-5555
    EMail: MDInfo@blindness.org
    – Provides support for people affected by inherited macular degeneration including Stargardt’s disease.
Start Your Own
  • Vision Support Group-download video presentations  This group provides free information and support through presentations to groups of senior adults affected by macular degeneration and related retinal diseases.  You can join & get access to their materials so you can use them in your own group.
On the phone/telesupport

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Where to find services

  • In the US: click here to find a low vision center, retina specialist, state agency, ophthalmologist
  • In the UK: click here to support services (listed on the right side of the page) such as skills for seeing, counseling, access to treatment…and more
  • In the US: click here to search for a wide variety of services (more than the link above)
  • In Australia: click here to find an ophthalmologist and optometrist
  • Worldwide: click here for resources worldwide

Resources for Students

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Books and reading materials

Specific Titles

Sources of Books

Formats: Braille, large print, e-book and audiobooks

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Videos

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Personal stories of living with AMD

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Online newsletters

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What is AMD?

Wet Form
Dry Form
How fast does AMD progress?
  • A good article about how difficult this is to answer
  • Great video that explains why early detection is important especially when detecting the change from dry AMD to wet

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What is Stargardt’s Disease?

Also called Stargardt’s Disease (SD) or Stargardt Macular Dystrophy (SMD) or Juvenile Macular Degeneration (JMD), it’s an inherited, juvenile macular degeneration. The progressive vision loss associated with Stargardt disease is caused by the death of photoreceptor cells in the central portion of the retina called the macula.

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The Science Stuff

Role of RPEs

Geographic Atrophy

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Symptoms

Charles Bonnet Syndrome/Visual hallucinations

Other problems with vision & AMD

  • problems with visual acuity, photostress, blindspots, color vision, sensitivity to light, depth perception
  • eye problems that have similar symptoms as AMD:

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Risk factors

Age

  • Age is a large factor but can start earlier
  • Much less common are several hereditary forms of macular degeneration, which usually affect children or teenagers. Collectively, they are called Juvenile Macular Degeneration. They include Best’s Disease, Stargardt’s Disease, Sorsby’s Disease and some others.  See Stargard’s Disease section above.

Diet/nutrition (working on this section)

  • diet low in various nutrients & high in others have been linked to AMD.
  • See Nutrition and Vitamins/Supplements under Self-care/self-maintenance below.

Race

Gender

  • AMD more common in women perhaps because women live longer than men

Uncontrolled high blood pressure

Uncontrolled high cholesterol

Smoking

Blue Light

Eye Color

Aspirin & other medications

Other possible causes

  • Biological Process in Wet AMD – some evidence that the photoreceptors are starved by the lack of food (oxygen & nutrients in the blood) and the growth of blood vessels is to compensate for that.

Connection between AMD and Alzheimer’s Disease

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Treatments

  • FDA approved options in the US, injections, implantable telescopes, laser treatment (also outside the US)
Injections for Wet AMD
Telescopic implants
Are there new treatments in the pipeline?
Vitamins (see Self Maintenance/Self Care section below)

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Research/Clinical trials

 

How can I become a part of a clinical trial?

  • A list of sources of information about clinical trials and how to find out for you to participate in.
  • You can search for clinical trials from the links above
  • There are registries where you sign up and enter information about the status of your eyes.  Researchers will use this information to find people that match their research and contact you.  Click here for more information about these registries in the US and elsewhere

Gene Therapy

Bionic Eye/Retinal Implants

  • What is a bionic eye?  It’s also called retinal implant or retinal prosthesis.   Implant is put in retina, camera worn by person sends image to implant which stimulates optic nerve
  • Click here for overview of retinal implants including videos of how it works & interviews with people who have them.
  • March 21, 2016 UK Bionic eye being tested
  • Here’s an article about one being developed at Carnegie Mellon institute in Pittsburgh, PA.

Nutritional Supplements

  • See Vitamins/Supplements section below.

Stem Cells

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Coping with low vision

Low Vision Aids

Wearable Technology

  • coming soon!

Suppliers of low vision aids

Financial Help

Sunglasses

Lamps

Transportation

  • A website for the US where you enter your zip code and transportation options for your area will be shown.

Bioptic Driving

Depression

Checking vision

Amsler Grid

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Self maintenance/self care

Low vision rehabilitation

Vitamins/Supplements

Nutrition

Exercise/Activity

 

More to come, you can check out these posts now

Video: Overview of Assistive Technology for People with Low Vision

Highlight: How do I use Zoom for Apple products?

Highlight: What about Apple’s accessibility features?

News: Top 10 Low Vision Aids for AMD

 

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