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
        
        video: Stuart Richer talks about his lutein & zeaxanthin study
        
        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
        
        For good eye health
        
        For general good health, from Cleveland Clinic
        
        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.

References

Like this:

What do we hear?

How do we know what to believe?

What can we control?

A lifestyle

Supplements

Are there reasons to be optimistic?

What can I do NOW?

Next: Making Elmo Proud

Like this:

Nutrition for Good Eye Health – the Basics

Eye Healthy Nutrients

Diet Plans for Good Eye Health

Like this:

I’ve added some pages from that group that might be of interest to you.

Frequently Asked Questions

AREDS2-based Supplements

AREDS2-based Supplements With 0 or 25mg of Zinc

Navigating

Topics-click below to move to a topic

Links We Like

See what vision is like at the various stages of AMD

Glossary

Websites devoted to AMD and Other Forms of Macular Degeneration

Websites containing information about AMD and Other Forms of Macular Degeneration

Support

Message Boards including ones from

By postal mail

Start Your Own

On the phone/telesupport

Where to find services

Resources for Students

Books and reading materials

Specific Titles

Sources of Books

Videos

Personal stories of living with AMD

Online newsletters

What is AMD?

Wet Form

Dry Form

How fast does AMD progress?

What is Stargardt’s Disease?

The Science Stuff

Role of RPEs

Geographic Atrophy

Symptoms

Charles Bonnet Syndrome/Visual hallucinations

Other problems with vision & AMD

Risk factors

Age

Diet/nutrition (working on this section)

Race

Gender

Uncontrolled high blood pressure

Uncontrolled high cholesterol

Smoking

Blue Light

Eye Color

Aspirin & other medications

Other possible causes

Connection between AMD and Alzheimer’s Disease

Treatments

Injections for Wet AMD

Telescopic implants

Are there new treatments in the pipeline?

Vitamins (see Self Maintenance/Self Care section below)

Research/Clinical trials

How can I become a part of a clinical trial?

Gene Therapy

Bionic Eye/Retinal Implants

Nutritional Supplements

Stem Cells

Coping with low vision

Low Vision Aids

Wearable Technology

Suppliers of low vision aids

Financial Help

Sunglasses