Finding Support When Newly Diagnosed

Trying to calm someone newly diagnosed with AMD works about as well as trying to baptize a cat.

Diagnosed with AMD

Don’t feel bad, we all were gobsmacked when we got our initial diagnosis. In this article, I will try and diminish some of the fears and preconceptions you may have about AMD. Just know that I am not making light of this disease. No, my motive is to try and remember back 9 years ago to the time I was diagnosed with wet AMD in one eye and dry in the other.

It's not an easy journey

Although I now have a wonderfully empathetic and caring RS (retinal specialist), this wasn’t always so. The first eye clinic I went to, the place that confirmed what my OD (optometrist) suspected, was not great. It was like a tuna factory... move em in and move em out! Next, please!

Looking back on some of my initial thoughts and fears

Reaction:OMG! I’m going to go blind... and soon!

Reality: Nope! This disease is a notoriously “slow mover”. Like I said, it’s been 9 years for me and I’m still in play. Still reading, watching TV, and driving.  So you new folks... RELAX and BREATHE! It’s gonna be right.

Reaction:They’re gonna stick me in the eye with a needle! And I’ll be awake? No way Jose, I can’t do this!

Reality: You got this! It’s not near as big a deal as you think it is. First, they numb your eye so much that you can’t really feel it. Second, they come at you with the needle from the side, so you can’t see it. And it’s over in seconds.

Reaction:How will I work? Will I still be able to drive? Who will take care of me? Do they medicine to fix this?

Reality: My retirement date was 2 years after I was diagnosed. I made it easily. I’m still driving after 9 years, but at night, I let my wife drive now. No one needs to take care of me, I still do most everything. Modern medicine does not have a cure for AMD...yet. But there are anti-VEGF meds to hold our disease at bay and drastically slow its progression. Not to mention, many ongoing clinical trials in phases 2 and 3 that show promise.

Worrying is only natural

It doesn’t do much good to worry but I think it helps us to formulate strategies and plans for living with low vision. Having low vision does not mean you will go blind! We never lose our peripheral vision and very few of us lose central vision in both eyes.

I remember back 9 years ago and my OD (optometrist) was a Marine and maybe didn’t have the most gentle bedside manner. He said, “Richard, don’t worry so much. You’re so old you’ll probably die of something else before you ever go blind!”  Hahaha! I took a strange comfort from those words and I remember it to this day. It’s still holding true and I know he meant well, he was just painfully blunt.

But I digress.

Some quotes to ponder

Here are some more quotes and sayings on worry.

"Alcohol can violate your standards quicker than you can lower them, worry works the same way." ~ Robin Williams
"If you spend your entire life worrying about nothing but yourself, in the end, all you have is yourself."
"An occasional kindness bestowed and kindness received are like diamonds, they are bright and rare."
"Everyone has a right to hope when reality says you’re screwed. Hope is the only thing stronger than fear."
"The definition of futility is looking for a black cat in a dark room."
"Remember a miracle is just a good thing we don’t understand."

Finally, let me just say. We know it’s scary and threatening and we know you’re worried. But your mind can conjure up scenarios of the worst kind and ones that simply aren’t true. We’re all in this together and you are not alone! Remember what that crazy Marine OD said. I wish us all well on our shared journey.