Past treatment - multiple rounds of heat laser for MD.
Current - vitamin supplements (AREDs), healthy oil (krill)
Prognosis - I would like to be an astronaut when I grow up, but after watching The Right Stuff, my prognosis for this is not good. Current state of vision - legally blind in left eye with no central vision; right eye has ganglion cell loss (glaucoma) but have maintained vision.
I was the trend setter, getting neovascularization at a young age. My father developed wet AMD after I did, at 85, but we caught it quick with good at-home vision testing and started treatment before he lost any vision from it. My mother had cataracts, but retinas have been healthy. My kids have visions of me buying a boat and a Triumph TR-4 convertible someday (or at least they should).
Impact On Your Life
When faced with a challenge in life, I face it head-on with expert levels of worrying. I try not to miss a good opportunity for projecting the worst case scenario and putting my best foot in my mouth when trying to talk myself down.
I got MD in 1991, before anti-VEGF treatments, when heat laser treatments required the retina specialist to make burn spots, effectively destroying past the rods and cones down below the Bruchs membrane to cauterize the blood vessels and stop the bleeding. This resulted in permanent vision loss all around the bleed area in an attempt to stop the spread. I am grateful for the treatment, but it never lasted. I became an expert at monitoring my vision so that I could detect a problem as early as possible, so that I could be treated as early as possible and minimize the size of the permanent vision loss scars. As an engineer, I developed my own tools for monitoring my own vision which allowed me to detect swelling that happens prior to a blood vessel bleeding.
This helped me. 10 years later, I was working as a consultant for Pfizer, which was developing the first anti VegF treatment (Macugen). The clinicians encouraged me to develop my vision tests. So I did. I developed the tests (now called KeepSight), patented them, and got funding from the National Eye Institute to test them and got great data to show they work 500% better than the Amsler grid. Working on KeepSight helps me focus my energies on helping others to cope with MD.
Over those early years of heat laser treatments, I lost all central vision in my left eye and became less anxious about my right eye- but the feeling of fear that comes with vision loss is something I don't think anybody should have to face alone. MDSupport (Dan) and his books have helped countless people and I am grateful for the opportunity to share my own experience because of this site, and for his help in giving away KeepSight test booklets.
We have been working on KeepSight vision test for over 10 years. Our studies with Johns Hopkins have shown highly significant (>500%) improvement in comparison to the Amsler grid. The tests are designed to be given away for free to patients and their family. We have attempted to gain support from the pharmaceutical and vitamin companies but are still trying. KeepSight is now in clinical studies in multiple eye hospitals across the UK and another study in Los Angeles.
I run a small business which is active in two areas:
- Developing new medical devices
- Teaching companies how to innovate and develop new products
We are also developing devices for the lower limb to help people with diabetic foot ulcer to prevent recurrence and amputation. We have studies active with 5 universities, and the clinical tests have shown significant benefits and we are continuing to move that program forward.
More About Me
Now that the kids are out of the house, and I no longer need to feed them - I have turned my attention to feeding the birds, which requires less menu planning and fewer dishes.
I now have several chickadees that I know by name and that feed from my hands. The tufted titmice, downy woodpeckers and nuthatches tell me that they are not that enthralled by my idea of what a good waiter should do, and that I should just leave their food on the feeder tray and give them a chance to eat in peace. But I nag them too and am grateful when they come close to eat out of my hand. Being shut-in with Covid, I decided to write a booklet about this so others can try too.