December 20, 2003 - I find myself sitting here typing this trying to figure out what has happened since the last time I updated this site. First of all, I guess I better update my own situation.
At three years post diagnosis, I still have 20/20 vision in the right eye, and the left eye continues to be my problem. I've continued wearing sunglasses religiously when outside, but I find that I can't always function with them on inside. As such, the indoor use has declined considerably. At one point, a lens technician at Oakley had made an experimental lens for me that was great for indoor use, but communication with him abruptly stopped. I think Oakley management was nervous about the idea of something being sold (and them possibly being accused of selling snake oil). I understand the problem, but it was frustrating.
I am finding some difficulty in dark adaptation (driving at night), but I can't be sure how much of this is the disease, and how much of it is welcome to being 43 years old. I do find that often when I am having problems that it is not unusual for others to also be having difficulty who do not have the disease.
In September of this past year, I went to see Dr. Nolan at the Nolan Eye Center in Connecticut. I found out about Dr. Nolan through a friend, and after researching what he was doing, I decided to go visit him. Dr. Nolan has found what may be an interum treatment that seems to help, in some cases, slow the degenerative process and restore some lost vision. This is an off label use of an FDA approved drug, but the off label use has not been fully studied or approved as of today. Considering the way Stargardt's works, I didn't feel that I had time to waste waiting for the government to get around to it. I went to see Dr. Nolan and have started on ECHO therapy (for more about this, you can go here and here).
I get asked about once per week "how is it going?" Well, after starting the treatment, I did see measurably better....but not much. Remember, my vision isn't that bad. I'm trying to hang on to what I have. I'm hoping that I can slow the disease down with this....but what I do know is that (1) I can still drive, (2) I can still read. I did give up fighting to keep my pilots license, but not because it couldn't be done. I don't currently own an airplane, and there wasn't much chance I'd be buying another anytime soon. As such, the extra testing the FAA was requiring on an annual basis just wasn't worth the hassle.
In the past year (actually, in the last few weeks), I was forced to change my e mail addresses after being overwhelmed by SPAM. While I'm delighted to talk to anyone about things on my web site, I'm absolutely frustrated beyond expression at those idiots out there (and if you are one of these, YES, YOU ARE AN IDIOT!) who think that by sending me 400 e mails advertising pills, patches, pirated software, bogus diplomas, get rich by getting money out of (name the country here), etc e mails. When it got to the point where I was getting over 200 per day, something had to give.
For anyone who might be trying to reach me, the address on this site has changed. You may always get the current contact information here.