NOAH AOC

Several years ago, they had a corrective procedure for nystagmus that they were developing over at Hadassah Hospital, in Israel.  It involved injecting botulin toxin (yup, botox!) into the muscles around the eye to paralyze them temporarily, until they could sort of catch up and gain strength.  However, it would only work for people who had nystagmus due to muscle weakness, which isn't why we have it, so it wouldn't really work for us.

I may be opening myself up for a bit of criticism here, but there's something to be said for a decent mobility aid.  Some people find the white cane helpful, even if it's just to let others know they can't see them coming, rather than to feel every detail.  I, however, cannot say enough good things about my guide dog.  She has been instrumental in helping me avoid injury and falls.  I have a lot fewer bruises and falls, I run into fewer obstacles, and I do much better with curbs and intersections, now that I have her.  Just food for thought - guide dogs are a lot of hard work, but for some people, they're quite worth it.  

Hi Devin and others!

I had three eye operations in my life until now but since they were in my early childhood I don't quite remember what was done there exactly. I will ask my mom about it these days and then post again if i found out something which wasn't said yet. But I noticed that my nystagmus is a problem or at least can become a slight nuisance when i am tired, so at the end of a long (stressy) day OR when there is not enough light in my surroundings.

Interesting: Like you I also have the problem of shaky hands, it can be seen escpecially when I hold a sheet of paper (normal document size, don't know if you have this DIN A 4 thing in the US / Canada). It is not a problem when I do stuff, even not when i play bass where you need good hand / hand eye coordination but sometimes it annoys me, too.

Greetings, Grey 

Thanks for all of your replies--as always, very interesting.

 Indeed.. the shakyness. I wonder if a study has ever been conducted on this. We have nystagmus because of our (wonderful) albinism. But, why should it stop at the eyes? I mean.. what is it about albinism that HAS to effect the muscles in our eyes, and eyes alone. In fact, albinism doesn't "target" anything so to speak. The eye conditions resulting from albinism are conducive to the lack of pigment.

Could I be wrong in saying that albinism effects "steadieness" of muscles in general? Or is it.. just me?

Devin -

nystagmus associated with albinism isn't due to unsteady muscles. It is because of the development eye. Yes, lack of pigment, but it is much for than that. The eye is trying to focus - find a spot for best vision.  Because of the lack of pigment, the light reflects different than in a person without albinism.

Very interesting answer! Thank you.

If there is a dip in the curb I often trip as I don't perceive it

That was my son before surgery. Also is their was concrete and then grass he would put his foot out not sure if their was a dropoff or just a change from ground to grass. 

Those are both me!  Rest assured, if there is a coffee table in a room, my shins will locate it!  LOL!  Steps and stairs are interesting too.    Here's an interesting tid-bit, though... Straight ahead of me my depth perception is much more accurate. it's downward that I have issues.  I'm sure I read an explination for this somewhere, but I'm not sure where.

 

   Hello.

  As I know, depth problems occur when the perosn having albinsim has also astigmatism. This problem makes us incapable of estimating depth and destance between objects or between an object and us.

 

Ery 

Since we're talking about nystagmus, surgery, etc...

I was wondering whether anyone knows how frequently tenotomy surgeries for nystagmus are being performed these days.  I had gotten the impression that they were being done a bit more regularly, but my retinal specialist seems to indicate that they are still very rare.  He has also indicated that the surgery has a high risk of eye misalignment--anyone know anything about this?

I'm sort of dubious because this same doctor also said dismissively that such a surgery also "only" tended to provide an acuity improvement of one or two lines.  One or two lines can be functionally *huge* for someone with high partial blindness.

Best,
Miriam

Tripping over curbs / kerbs and/or hitting you shins is often a byproduct  of glasses with a high plus script.  The good news is that the glasses do provide some useful magnification but the downside is that your field of view is reduced.  Anything below shin height tends to get cut off by the frame of the glasses - so you hit things because you didn't get a chance to see them.

If you have a high plus script it is worth considering contact lense instead of glasses. On the one hand you will lose the "free" magnification of the glasses but you will regain a fuller field of view.   If you chose contacts with a coloured iris then you can also reduce your susceptibility to bright lights/ photophobia.

 
Learn more at the New York Noah chapter meeting which is being jointly held alongside the HPS conference on Saturday 10 Feb in Long Island. 

 
Brian