Advanced Atrophic AMD
Age at Diagnosis
I-CAPS, regular exams with Retinal Specialist
I just saw a Specialist in AMD/Retinology at UCLA/Jules Stein (in 10/10). He noted that I have advanced AMD, "significant" atrophy, and "cellular migration" (dead cellular tissue). I was diagnosed at age 47. Around age 51, I could no longer drive well at night---had trouble with starbursts, glare, contrast. I now have had trouble with starbursts during the day as well, (when light gleams off of chrome or glass), but because of diffuse light during the day, I can adapt well. The UCLA visit confirmed that I have extensive distortion and multiple blind spots---something that was becoming obvious to me anyway. Binocular vision is still good as far as acuity---but with the left eye, particularly, parts of images or letters are missing and very distorted. I nearly failed a Snellen at the DMV with my left eye. Will see the specialist at UCLA each year unless a new concern develops.
No one in my family that I know of had or has AMD. The specialist I saw is also a geneticist and took family tree info from me. It is likely that environmental influences were a factor as I was often in the sun when I was young, and also smoke.
Impact On Your Life
The night driving restriction, first issued in 2002 was initialy very depressing. I could not go anywhere at night unless I had a ride. Eventually, I adapted to it, and learned to love simply being at home. The restriction has more impact on my personal life than on my work life; I am a mobile social worker for my agency, and thus work mostly at home, writing reports. For 4-5 months a year, when I do have to be in the office or at Court to testify or at a home assessment, I am allowed to leave early (depending on the time of sunset and the driving distance involved to get home). The UCLA Specialist told me that the particular type and manifestations of AMD that I have are commonly known to cause significant difficulty driving at night.
I have had for years difficulty distinguishing like colors--first, dark colors and more recently, similar bright colors, such as pink, peach and orange. I mostly keep my clothes organized so that doesn't happen, but not too long ago, I actually headed out of my house in blue pants instead of black (which matched my shirt) and with one brown boot and one black boot---fortunately, discovered as I stepped out into bright sunlight before heading off to church!
No night driving. Increase direct light for reading. Avoid daytime glare (which can be quite severe sometimes, when light is reflected off of glass or chrome) by wearing sunglasses--sometimes, even changing lanes to get away from an "offending" car ahead of me. As noted above, I have had to separate dark-colored shoes, shirts, pants, etc. because I cannot distinguish the colors in anything less than strong light from a bright window.
God has blessed me with so many wonderful things. I have come to see that even a trial like this brings much richness and goodness into my life. Over the years of not being able to drive at night, I have learned to love being focused on my home, instead of being out doing things at night. That has brought a peace to my life that is a blessing.
Adaptations: Careful to keep clothes sorted so I don't mix up wrong colors in indoor light. I have to plan ahead for cooking and household chores supplies, as neighbors don't always have what I need.
I've started to use small "eccentric viewing" adaptations when letters are distorted----I nearly failed a Snellen/DMV test this summer, b/c the left eye has so many blind spots and distortions, but was able to turn my head to read the letters.
I rely on friends/colleagues and church friends to drive me at night, if there is an event I want to attend. Sadly, I must forego many opportunities to do things, but for special occasions, I find rides. Or--I pay for a cab or other driver (youth from my old church used to drive me and were happy to earn some extra money).
My Christian faith has helped me adapt, as I know that God always means something for good and not for harm.
I'm an investigator for Child Protective Services. My job function is like a detective, and I am blessed by being allowed to work from home, a lot, writing long assessments and reports for the Court. Thus, my night driving restriction does not have a dramatic effect on my work. I love my job. It is interesting and challenging and I feel that I have a real chance to do some good for abused children. I have been at my agency for 20 years.
More About Me
I am divorced. I have a son who is serving our country in Iraq, doing classified work for the U.S. State Dept. and the U.S. Military. He works for the State Dept. My Christian faith is central to my life. I have a wonderful church home that is one of the great blessings of my life. I am active at church--I write for the newsletter and the weekly bulletin, I help with ministry, I teach a Women's Bible Study class. My life is full and rich. I love reading (a good adaptation for being at home most nights), especially Bible Study, theology or church history. I have a comical little white dog who resembles a dust mop, a cat, and a bird. Life is an adventure every day, and that includes having AMD.