Geographic Atrophy: Optimistic About Possibilities!
I have always been adventurous. I have always enjoyed solving problems. I am a lady engineer and a private pilot, so hang on to your seatbelt. You may experience occasional turbulence :)
Initial MD diagnosis
I was diagnosed with dry AMD and GA in January of 2019 at age 65. It was no surprise. My mother and my paternal grandfather both had it and there was an Amsler chart on our refrigerator. When I saw that first bent line with my left eye (cue dramatic music) my new "adventure" began. I started taking AREDS vitamins.
My diagnosis did not affect me yet
At that point it was not affecting my life. I was happily retired, still flying my little four seat airplane hither and yon, working as an on-call technician for video production with exotic assignments in San Francisco, New York, Los Angeles and Japan. Plus I had two sweet granddaughters I was caring for two days a week.
By mid 2020 we were indoors with the pandemic, and I was noticing those characteristic shadows when I blinked my eyes in a dimly lit room. My left eye had a larger shadow, but not opaque. My right eye had a smaller shadow and porous, even less opaque. Both shadows were slightly raised in my field of vision, not vertically centered.
Emotional decisions
By the end of 2020 there was enough distortion to the vision in my left eye that my perception of distance was affected. If the lighting was not bright I could not pour liquids without spilling them. I made the emotional decision to discontinue flying. I had 45 years of pure joy and lots of videos pictures and memories that would have to sustain me.
Today, December 2023, and those porous blobs are bigger, and less porous. I tell friends and family it's like having a pair of sunglasses on, all the time. I need more light for many indoor tasks.
I've given up driving unfamiliar roads at night, or when it's raining. I have a hard time with oncoming headlights as my eyes take longer to change iris. I have to stare at signs longer because there are little areas of distortion creeping into the corners of my right eye. I can't just glance at a word and "see" it.
Adapting to my new vision
Fortunately because the blobs are still not vertically centered, I have been helped driving at night by focusing above the normal sight line. For instance, if there's a car in front of me, I watch the roof rather than the license plate. If no car, then frequent glance at the horizon. This makes the road surface and lane markings much brighter.
Possibilities on the horizon
Now, let's talk about the possibilities. In 2023, two injectables were FDA approved for slowing the progression of dry AMD-GA. This was a historic turning point. Prior to this, doctors had nothing to offer us but AREDS vitamins, healthy diet, lowering blood pressure and exercise. Studies continue and we can expect further options for all of us to consider.
Experiments are under way for options that may reverse some of the damage to the macula. Stem cells are an interesting path. An Israeli - Genentech joint venture is evaluating stem cells after preliminary successes in Israel.
Another avenue is to stimulate the body's own regenerative capabilities by coupling healthy lifestyle improvements with boosting oxygenation of the blood. A few doctors in Germany are using ozone infusions and have some big anecdotal wins. Those may cross the ocean in the future.
Another small study found Hyperbaric Oxygen Therapy (HBOT) where persons spend time in a pressurize chamber, produced small improvements in visual acuity, reducing how opaque the dark cloud area is.
And technology has stepped up to the plate with such intriguing solutions as the eSight glasses, (esighteyewear.com) where you incorporate the equivalent of a smartphone into eyewear.
It's possible that we may be the first generation of Dry AMD-GA persons to benefit from this tsunami of potential. It's exciting!
Managing my own journey
As for me, at this time I am eating lots of dark leafy greens, have lost weight, controlling by blood pressure, and am signed up for a once-a-week HBOT session. I'm not sure if it's doing any good for my eyes, but it's certainly not in any way dangerous. HBOT is approved by the FDA for treating other conditions so I thought it worth a try. A doctor (not my doctor) recommended 20 sessions, and being an adventurous problem solving kind of girl, I am giving it a try.
Whew! A lotta things to think and hope about, don't you agree?
Thanks for flying with me today. Happy trails to whatever your final destination may be.
Randy
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