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.