Where All Roads Lead

So, did I mention that I was told there is no cure? Those of you with wet macular degeneration can be given shots. They actually sound rather disgusting but seem to work. The purpose of the shots is to slow the growth of new veins. This will help reduce the bleeding in the eye.

Dry macular degeneration has no cure. That is, it has no cure yet. Having the personality I have, taking “no” for an answer or taking “I don’t know” for an answer is simply unacceptable. That was why I put so much effort over last summer into finding another way out of this mess.

I don’t take “no” or “I don’t know” for an answer.

Fourth of July, 2015 was a rainy, dismal affair. For some unknown reason I picked that miserable day to throw myself a pity party. I sat imagining what it would be like to be blind. I sat imagining what it would be like to be handicapped and pretty much alone. After about four hours of this, I got bored. Blind was not for me if it was going to be so damn boring. Consequently, I made a decision. I was not going to go blind and if I were to go blind, I would crash and burn in the most spectacular fashion you have ever seen.

If I were to go blind, I would crash and burn in the most spectacular fashion you have ever seen.

It was after this bit of epiphany I started to seek treatment in earnest. My ophthalmologist told me probably the best chance of a cure was in stem cell therapy. However, stem cell therapy on eyes was in its infancy. They had run so few people through the procedure there was no way of knowing for sure what was going to happen.

I was sure of one thing: Age-Related Macular Degeneration results in central blindness. There are no maybes. It will eventually happen. Enrolling in a study would give me a chance. The chance maybe only 1% but it was 1% more chance than I had doing nothing.

AMD results in blindness of the central vision. I was sure of this one thing.

Also, when you hit a certain age, some people like to leave a legacy. One of the developmental psychologists had a name for this stage in life but I don’t remember what it was [Editor’s note: Erik Eriksen] Essentially, this time in my life is one during which I should give back. I should lead those who are younger. I should contribute. This was going to be my chance. Great secondary gain. I wanted to save my damn sight.

I wanted to save my sight but I also wanted to lead those who were younger.

There are sometimes I believe the Universe—capital U–is showing me the way. I would look at eye drops and come back to stem cell research. I would look at oral medication and come back to stem cell research. I would look at laser treatments and, yep, come back to stem cell research. The writing in the stars was pretty obvious. I was going to get into that study one way or another.

The study I chose was a stem cell study replacing dead and worn out RPEs. This particular study is being done on both coasts. At UCLA medical center the lead researcher is Stephen Schwartz. The lead researcher on the East Coast is Carl Regillo.

The lead researcher for the stem cell therapy is in Philadelphia which is a day trip for me.

Never heard of him until I started doing my research. Then I realized the man is a rock star of retinas. Regillo has over 700 publications to his credit. He has been named to the best physicians in America list at least eight years running. But just about the best thing about Regillo? He is practically right in my own backyard! Regillo is a mover and shaker at Wills Eye Hospital in Philadelphia.  Philadelphia for me is a day trip. Even better, the good doctor has an office in Bethlehem, perhaps about 2 hours away. Yet better, I got an appointment within three weeks of asking and they took my insurance! So far, it does not get any better than this.

Carl Regillo is at Wills Eye Hospital in Philadelphia & has an office in Bethlehem, perhaps 2 hours away. And I got an appointment within 3 weeks of asking & they took my insurance. So far, it does not get any better than this.

Next: The Man Behind the Curtain: The Wizard of Wills

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2 thoughts on “Where All Roads Lead”

  1. While I’m very happy that you are looking at all of the options, I can’t help pointing out that your idea of what life would be like as a blind person may in fact be very far from the truth. That’s usually the case anyway. Please don’t misunderstand: it’s great that you are looking for options and even more terrific that you are sharing your journey with all of us. But as a rehab counselor and a person who has been blind from birth, I can tell you that people generally have a view of blindness which is much, much, much more bleak than what is actually the case. Just something to keep in mind as you move along your incredible journey.

    1. Don, thanks so much for your comment. Sue has written about what it brought up for her on the new page “Vision LOSS”.

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