My Journey: From Dry to Wet Macular Degeneration - From Despair to Hope

by Jean
(Natick, MA)

Sharing my experiences with macular degeneration with those who "get it" has taken me from despair to hope--and back again--many times as the disease responds to treatment, progresses, or stays the same.

To begin with the present, at age 72, I am currently receiving monthly Lucentis injections in both eyes.

My left eye--after 30+ injections--is holding its own at 20/30, though I also have glaucoma in that eye. My right eye, initially the better eye, has lost central vision and may be too scarred to respond to additional injections. That eye is currently 20/160.

Diagnosed with dry-macular degeneration in both eyes nearly ten years ago, my eyes stayed asymptomatic for about six years, until the left eye became wet.

As I said, it responded to injections. The right eye remained dry with no problems until a year ago and has not responded to treatment.

The first retinal specialist I saw years ago said, "Oh, you have macular degeneration. No big deal. You just won't be able to read or drive." I got rid of him quickly, filed a complaint about him; he is still practicing.

Reading and writing are my life. I have published four books and many, many articles, essays, short stories, and poetry. At present, I am still able to work, though I need bright light and occasional large print online. It is difficult for me to even think of investigating alternative materials.

An avid traveler to and activist in developing countries, I have had to restrict these trips just this year, and am uncertain about any future journeys at this time.

A former tournament tennis player, I also had to stop that activity this year. Some of these restrictions come with age, in any case. And I'm adapting to adapt to these losses.

The worst--and I don't wish to make this piece only complaints--is that my husband died two years ago and I'm alone in dealing with AMD.

Though he was very ill for a long time, his compassion and understanding for my eye condition was an enormous boost to my well-being. Hence, the absolute necessity for those like me who live in isolation with this disease to connect with others.

I still drive, live in my own home, and work. As a substitute for tennis exercise, I got a terrific rescue dog with a great sense of humor and upbeat disposition. But, like all of us with this condition, I worry about additional losses in vision.

Thank you for this site. It reminds me that I am not alone.