June 30, 2002 (click here to jump down)
February 6, 2002
I've known for 17 months now that I am living with a disease that modern medicine cannot yet treat or cure. This has been a tough blow for me emotionally. All of us, sooner or later in life, come to realize that (1) we aren't indestructible, (2) this life won't continue forever, and (3) aging will take its toll on us in the form of various aches, pains, disabilities, and loss of regenerative powers. As one who has always had nearly amazing recuperative powers, Stargardt's disease was a tough thing to accept. It wasn't a tough virus I could eventually beat down, no antibiotics could help, no modern treatment available, and I'd never even heard of the disease, let alone known someone who had it. At first, there was an incredible feeling of isolation; I felt that no one would know what I was going through.
I've tried to keep a rule through my adult life. Pity parties are allowed, but they are limited to 48 hours. After that, the logical side of me gets to kick the emotional side of me really hard until I get my act back in gear and on track. This time, the limit was really tested. How was I supposed to get over something I couldn't get over?
The best way to fight an enemy is to know the enemy. I finally figured out that I didn't know this enemy. My experience is in computers, software, and network engineering, not molecular or microbiology. So, I did the very thing a true geek does. I used my equipment to run a trace on the internet and locate the top 24 researchers in the world on Stargardt's disease....and contacted them all! Some where helpful, some weren't, and quite frankly one or two were real jerks. But in the end, I was pleased to find out that the two leading teams working on Stargardt's (and in fact the ones that identified the Stargardt's gene) were working out of Baylor University in Waco, TX and right down the street from me at the University of Utah here in Salt Lake City!
I contacted both research groups, and found both were interested in recruiting late onset Stargardt's patients for genetic research (want to get involved with this? Click here). I agreed to be a part of both groups. This basically meant I would fill out a lot of forms they could tabulate as research data and provide blood samples.
I also located the MD Support website and the Yahoo Stargardt's club. In my research, I learned several things about this disease. The first is that good nutrition is very important. For specific info on what I'm doing as far as nutrition, click here. The second thing I learned about was protecting the vision I have left. For more information on this, click here. The third thing I learned, and one of the most important, is THAT I WAS NOT ALONE. For more about this, click here.
This morning, after almost a year and a half of living with the disease, I went back to the Ophthalmologist that diagnosed me. I had been putting this visit off for some time, probably as a form of denial. If I ignore it, maybe it will go away right? I guess what I was really afraid of was the possibility of more bad news. But, facing it and hearing the truth wasn't going to do anything but help me face this monster. My wife Linda took me to the appointment. I suspected the doctor would probably dilate my eyes, and I wouldn't be able to drive home. After going through the routine check in paperwork, I was taken back by the doctor's assistant who checked eye pressure, and refracted my eyes. This part was puzzling to me as it seemed I was able to read the normal (20/20 line) with both eyes, and with each eye individually. At the last appointment (the one that triggered the discovery of Stargardt's disease), the left eye had been between 20/50 and 20/70. She then dilated my eyes and parked me back in the waiting room to see the doctor.
After they had had time to fully dilate, the doctor called me back. He had the chart with the original films showing the retina from a year and a half ago. After looking in the back of the eye with two or three different instruments, he pulled the films out and took a look at them. He stated that it appeared that there was little visible change in condition of the retina. He asked how my prescription (for my contact lenses) was doing. I grinned and told him that since his assistant had just refracted me, maybe he should tell ME how it was doing. He flipped the chart back, and, SURPRISE, my vision is 20/20 in both eyes now! After he looked at the previous visit records, he said "I don't know what you are doing, but whatever it is, keep it up." I was near speechless. While my vision is not perfect in the left eye like it used to be, the fact that I can now refract back to 20/20 is of huge importance. Most states require 20/50 corrected vision to be able to drive, and my left eye had already gone past that. My pilot medical certificate requires correction to 20/20 or an FAA waiver. I was skeptical of the waiver process, but now it looks like it will be a non issue.
The doctor then, at my request, put the neutralizer drops into my eyes. After your eyes have been dilated, they can neutralize the dilation, but generally don't unless you ask them to do so. It cuts the time to get your eyes back to normal to under 2 hours.
After returning back to my office, I phoned my sister Glynn to tell her the news. The results of the doctor's visit have been a huge relief, and I found myself having a bit of trouble maintaining my composure. Notes were sent out to the legion of folks who have been praying for my battle with this to let them know the good news. I don't know what comes next, but I don't feel powerless against this demon anymore.
I'm continuing my regemin, though at times it is quite frustrating. I have found that stress creates worsening vision, but if I can reduce the stress, the vision improves. Making sure I get my vitamins is also helpful. I continue to wear my sunglasses all the time, and I'm finding that I can still read the 20/20 line on an eye chart if I do the chart early in the day. If I do it late in the day, I usually can't. But, I'll take what I can get, and I deal with it one day at a time.