Four Years Post-Diagnosis: That Long? Really?
Yes, 4 years and 1 month to be exact.
I couldn’t remember the exact date, so I got my medical records from my first retina specialist: July 15, 2019, one of those defining moments in my life.
My tips for those newly diagnosed with macular degeneration
There are a few things I have learned in the past 4 years that might help someone newly diagnosed with macular degeneration.
Use more light
Throw more light onto whatever you are doing. It helps reduce frustration and makes life easier. There are easy ways to do that.
I’ve got a new desk lamp for my workspace. A special lamp to use when knitting. Flashlights at key locations in our house. And the flashlight function on my cellphone. From dark restaurants to dimly-lit offices, that flashlight is a gift that keeps on giving.
Learn about and use technology
"Upskill" is the complicated word for learning new skills and improving old ones that relate to your current role or job. Simply put, if you’re an old dog, learn a new trick or 2.
I’ve found an app (short for application) that reads the words appearing on my cellphone. I use it only when I can’t seem to figure out how to make the text bigger. There are also screen readers for my laptop, but I haven’t needed one so far.
One of my advantages is that during my working life I had to learn new tech. I went from a manual to an IBM Selectric typewriter, to a Wang Word Processor, to work processors the size of a small refrigerator, to a personal computer (Apple, then PC), and now my laptop, Kindle, and cellphone.
Early on, a friend said that the way to overcome any fear of a new thing was to treat it as a toy. Play with it and see what you can learn.
Ask questions of your retina specialist, of the technicians in their office, of Google or DuckDuckGo (the search engine I use), of people who work in the low vision field, and of people who are also diagnosed with MD. MacularDegeneration.net and its forums are great places to learn.
I wish I had asked for a copy of my medical records earlier. The doctor’s notes on every visit are filled with information that I didn’t have before or had gone in one ear and out the other.
Did he ever use the words "serous pigment epithelial detachment OD" or "macular RPE changes OU?" Now I’m going to find out what that means. "Siri, what is..."
Do the boring, everyday things
They are not glamorous, but they help protect the vision you do have. Check your Amsler grid. East lots of fruits and vegetables. Talk to your doctor about taking AREDS2 vitamins, if you can tolerate them. If you can’t, ask your retina specialist for an alternative. Wear sunglasses and a hat outdoors.
Try to embrace injection treatments
I never met my half-sister, but several years after she died, I learned from one of her sons that she had MD. Penny’s eyes were beyond treatment by the time scientists developed the tools for early diagnosis and the anti-VEGF injections that keep my eyesight stable.
I try to remember Penny every time I go for my injection. The good old days were not so good if you had MD.
Have you introduced yourself to the community yet?