Impossible Dream? Part 1

by Bob O’Connell

Background

I am a 59-year old male. I live in a western suburb of Philadelphia, PA. My ARMD has progressed to geographic atrophy in both eyes. In my right eye, aka my good eye, my vision is corrected to 20/30. I experience double vision in my right eye. The double vision becomes more pronounced as my eyes tire each day. In my left eye, my visual acuity is impaired. I have two large scotomas that impair my visual acuity. When looking at the eye chart, two-thirds of the left-most and bottom of the chart were blank. Of what I could see, I was only able to read the top line on the chart. I could not see three of the 5 letters on that line. I also have a small cataract in my left eye. My relatively normal lifestyle is tied to the sight I have in my right eye.

My journey with macular degeneration started about 25 years ago at the age of 34. During a routine visit to my ophthalmologist, he noted that I had a few spots of different color in my macula. He did not see the need to do anything other than track any changes in future office visits. Over the course of the next 13 years, I went to see my ophthalmologist routinely.

In 2005, we were living in Tulsa, OK. During my routine eye examination, my ophthalmologist noted some abnormalities in the macula of each eye. He recommended that I go see an expert retina specialist and specifically noted that I should focus on one at Wills Eye Hospital in Philadelphia. At the time, he did not know that I was a native Philadelphian, nor did he know that I was working on a job transfer to the Philadelphia region. He did not know the names of any retina specialist at Wills, but he thought Wills was the best place to go.

I firmly believe that, if one has a serious medical condition, one should seek the absolute best doctor in the country for treatment. My first experience with this situation was to find a doctor for my son. He had some developmental delays. We took him to several specialists in Tulsa and received a non-specific diagnosis, Pervasive Developmental Disorder-Not Otherwise Specified. I was not satisfied with the outcome mostly because of the diagnostic process to determine the diagnosis. Each specialist in Tulsa conducted an hour-long interview of my wife and me using a specific questionnaire. They did not bother to perform any observations of my son. After convincing my wife that we needed to find an expert specialist, I began to research physicians who were active in the research of pediatric developmental issues. We found one in Miami and went on a road trip. When searching for a retina specialist, I used a similar search process and found Dr. Carl Regillo. [Lin/Linda: Dr. Regillo’s is Sue’s specialist and she’s written about her visits with him.]

At my first visit with Dr. Regillo in 2005, he identified my diagnosis as macular dystrophy. He recommended that I begin an AREDS regiment, which I did. I have since returned for follow-up visits every October. My condition has steadily worsened. During my visit in 2017, Dr. Regillo noted that my left eye is a candidate for clinical trials but did not cite any specific trial. At this point I realized that I needed to take any step necessary to preserve the vision in my right eye.

Vitamins and Supplements

In 2005 I started taking Bausch & Lomb’s PreserVision AREDS formula. When the AREDS2 formula became available in 2013, I started taking it. In 2016, I became frustrated with the progression of my macular degeneration and decided to talk to the local natural pharmacy about available supplements. Because of those discussions, I added Life Extension’s MacuGuard with Saffron and Astaxanthin and ProOmega CRP. I recently added SPM Active, a supplement to fight inflammation. [Lin/Linda: before you take any supplements, please check with your retinal specialist and medical doctor. Some ingredients may be contraindicated by your medical history.]

Next Page: Part 2 Clinical Trials

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