My Two Cents

Lin/Linda here.  My 2 cents which means ‘my opinion’.

I have been doing research about AMD & been here interacting with people who have it for 2 years. I can’t tell you how frustrating it is to not be able to say “take 2 pills” and everything will be fine. I think that at this time in history, we have experienced diseases like high blood pressure where we take a pill or pills and we are virtually CURED as long as we take the pills. Or as with high blood pressure, we now know that if a person loses weight, exercises and eats a certain diet, they won’t need the pills and will not have high blood pressure. We can have blood drawn and be told that we don’t have enough of …. so we take more of …. (fill in the blanks). Unfortunately, we are not there with AMD.

I continue this post knowing that in the past I’ve had people tell me to be honest. It’s hard for me to balance honesty and optimism. Let me try the honesty part and then later the optimism. I continue this with intense love and respect for all of you, know that.

We are told by others with the disease or by doctors in the field that taking a certain supplement which is a combination of vitamins and minerals is a ‘treatment’ (AREDS/AREDS2 or something else?). Or we are told to eat ‘leafy greens’ (how much, how often?) is a ‘treatment’. 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 did NOT get worse.”

There is one thing that we know about AMD: it is a disease with MANY potential causes and MANY factors and that everyone has a DIFFERENT combination of them. Our genetics – which include heredity but other genetics, too – probably has the most influence in some people, not all. We can’t control that.

What factors are part of the picture that we CAN control? Don’t smoke is number 1.  Keep your weight, blood pressure and cholesterol normal.  Some people can be helped by AREDS/AREDS2 supplements but some cannot so find out what the research says about your stage of AMD.  And people with a poor diet can be helped by eating better & taking the appropriate supplements like omega-3.

Unfortunately, we cannot YET look at a person genes or blood or diet or use of supplements and say “yep, that’s it!!!” Don’t stop eating spinach or kale or eating fish or taking supplements just because it’s complicated and your AMD is still progressing. There is no scientific way to tell if something is working for you but we also can’t tell if something is not working.

You are here doing your research and I hope that you see that dealing with your AMD is very much a ‘self help’ process and if you are lucky, you’ll have a retinal specialist with whom you can discuss this. There are ways to keep wet AMD vision loss as stable as possible but the disease process continues.  And there isn’t any way yet to stop the disease process for both wet and dry AMD.

I’m talking about an overall plan which includes managing your blood pressure, weight, exercise, diet, etc., in the best ways possible. And this plan includes researching what supplements may be good for you with the understanding that there’s research that says they won’t help everyone. I LOVE that there are people who are researching saffron and gogi berries and other nutrients but these people are ALSO doing more than that! But some people can’t afford all of the things that are discussed.

There is no one thing, there is no “magic pill”, not just ONE thing to do.

Is there reason to be optimistic? If you are even reading the headlines of the posts in our group, you will see some of the reasons. Not only in the research but in the posts shared by people who have the disease and who live a good life even with vision loss.

Keep a positive attitude – as much as you can – knowing that you are doing the best you can for YOU with what you and the experts know now. There will be more that we will know as time goes on.  And being connected as we are, we can rest assured that any new developments will be shared for all to benefit.

If you are new to your diagnosis of AMD, putting your plan together is a process that takes time and help. You may not be ready to start down this path yet because the diagnosis is a shock to many and there is grieving that happens to many.  We are here to help you every step along the way.  And remember…

You are not alone!

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

written 2/2/2018


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