I’m eating breakfast in the large group room waiting for the program to start. Dr. Richard Hertle is the keynote speaker at the conference. It seems he is the foremost expert when it comes to nystagmus nowadays.
When I was growing up, Doctors pretty much summed my nystagmus like this: It’s nystagmus, it’s not curable, it probably wont get worse, and it might get better. There’s not much you can do about it.” The end. It seems this has been the experience of a lot of people. I never really had a great medical understanding of what is going on with my eyes, so I’m really interested in what he has to say. Stay tuned…
Quite interesting finding a blog about nystagmus. I’ve personally found it slightly different than you with doctors, (or so it seems) with them almost interrogating me about my nystagmus because they’re interested in it.
Always the same list.
“How long have you had it.” congenital
“How does it affect your vision?” I don’t know, i’ve always been like this
“Do you ever notice the movement?” When i’m tired, stressed, drunk. Although the drunk one could just be me swaying side to side.
“How does it affect you day to day.” I can never drive, can’t really see clearly for more than a few meters. On a bad day I can barely see.
Of course there are normally other questions, but I tend to forget them.
One thing i’ve found most annoying about the disability is interviews. Because of the nystagmus my still spot is somewhere miles off to the left of me field of view. So I tend to look to one side of people when i’m talking.
No matter how much I try and compensate, force myself to look straight at them its damn near impossible because even if I think i’m looking straight at them, i’m not.
Sorry just wanted a place to vent I think 😛 Either way i’ll probably check in on your blog randomly.