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My Macular Degeneration Story

My AMD journey began back in 2006 (age 54) when an optometrist I saw for new computer glasses noticed drusen in both of my eyes. This news was not totally unexpected or shocking as my younger (by 4 years) brother had recently been diagnosed with AMD and I had been informed by my mom that my dad and his brother also had some degree of macular degeneration in addition to cataracts. That would have been in the mid to late 1970s.

Diagnosed with early dry bilateral AMD

So, I was referred to an ophthalmologist and I was diagnosed with early dry bilateral AMD. My best corrected visual acuity during this time period (2006 to 2017), remained at about 20/30 to 20/50. I started the AREDS2 regimen in 2006 and continue to do so. I also would occasionally use an Amsler grid with no problem noted other than maybe very slight wavy lines.

Did quite poorly on the vision test at the DMV

In 2017 my driver’s license had to be renewed. I was not able to renew online as I had done the time before, so I had to go to the local DMV office. No written or driving test was required but I did quite poorly on the vision test, which didn’t really surprise me but nevertheless made me acutely aware of my vision deterioration. The clerk told me to get my eyes checked and my license was renewed. My old glasses were at least a couple of years old, and with the knowledge that I carried the diagnosis of early AMD, I referred myself to nearby eye specialists at Baylor Scott & White Eye Institute. There I was seen by an optometrist, who agreed that my AMD was early, prescribed new glasses and I figured I was all set for at least a couple of years.

Weird vision changes

Then in late 2017, while on vacation, I started noticing some weird vision changes and when I got home I checked with an Amsler grid and sure enough with my right eye there was a definite distortion of the grid lines just to the right of center. I notified the Eye Institute and was referred to a retina specialist who confirmed the progression of dry AMD. He prayed with me that my left eye would remain as it was. However, about 6 months later I noticed similar distortion with my left eye.

Progressing to intermediate dry AMD

Since then I’ve been followed by the RS every 4 to 6 months with OCT and so far there is no progression to the wet form, for which I am grateful. However, my vision as of December 10 exam is left 20/50, right 20/150; left intermediate dry, right intermediate to advanced dry.

Fortunate to have a loving husband as my chauffeur

I am fortunate to have been able to retire just before my left eye changed and also fortunate to have a loving husband to be my chauffeur, now that I’ve been advised to not drive. Although with best eye better than 20/70, the threshold for limited driving in my state, I feel somewhat comfortable driving the mile or two to my hair salon and grocery store in my small town. However, for the most part my husband drives.

Tech-savvy techniques for reading and writing

Throughout my working years as a medical transcriptionist, I had become fairly computer and tech-savvy. I have had an iPad for several years, mainly for reading eBooks. I also read with the Kindle app on my computer. I have learned techniques with the computer for enlarging text size, etc., and have a keyboard with large black on yellow keys. I have been transcribing my favorite recipes into Word documents with 18-20 point fonts. I then print them and assemble into sheet protectors in a binder for easy access. I have also used my iPad to take a photo of a recipe so I can enlarge the print as I go. I recently upsized my monitor to a 27 incher and am typing this in 20 font.

Diet, exercise, and health

As far as diet and exercise goes, I’ve nearly always eaten a fairly healthy diet and have exercised (jogging/now power walking) since my early 30s. I am trying to incorporate even more leafy greens, etc., in my daily diet. I only smoked on and off in my late teens, very early 20s, but I did grow up in a house full of second-hand smoke from my dad. The brother of mine who has AMD has never smoked, but our older sister (now age 70) has smoked all of her teen and adult life and does not have AMD. Another brother does not have AMD.

Wondering if my high HDL cholesterol affected my AMD

I do have and have had for many years high HDL cholesterol (the good kind), which I thought was the benefit of my years of fairly vigorous exercise. However, I came across a research article recently that was trying to link high HDL cholesterol with increased risk of AMD, so I am wondering if my high HDL cholesterol has any effect on my AMD. I will see my primary care doc in February and I will discuss this with her and whether starting a statin might benefit me.

Trying to stay positive and informed

My main goal at this point in my life is to try to stay positive and informed. When I get frustrated about not driving or having to ask my husband to read labels at the grocery store, I remind myself that AMD is not cancer and will not kill me and that there are many people my age and even younger with much more serious health problems. I carry binoculars when I go to enjoy my granddaughters’ sporting events. My TV chair has been positioned as close as possible to the TV. I feel pretty comfortable around the house and kitchen, though I need to remind myself to be cautious when chopping veggies, etc. I could go to a low-vision specialist in Austin, about 100 miles away, but so far I think I am managing to do most things I want to do. I will be getting new glasses soon with just a bifocal for close vision, instead of progressive lenses, so that change will be interesting. The iPad and iPhone magnifying apps are quite helpful.

Praying every day for condition stability and a cure

I pray daily that my dry AMD doesn’t turn wet or progress much more. It has been fairly stable for the past year and a half. I also pray for those with any kind of vision impairment and for the many scientists out there doing research to try to find, if not a cure, at least better treatments.

Well, that’s my story up to now, the end of 2019. Coming up to the year 2020 seems somehow odd, since my vision hasn’t been 20/20 for years and will never be again.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MacularDegeneration.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Andrea Junge moderator
    1 month ago

    Wow, thank you so much for sharing your journey with us! I hate to hear that you have so much going on with your vision, but your positivity and ability to find the good in all of it is very inspiring. The genetics in your family seem to be strong for AMD unfortunately, but in some ways it’s good to know. Wishing you well as you move forward along your health journey! Happy Holidays! -Andrea, MacularDegeneration.net Team Member

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