ANN Conference

Hey everyone!

I’m getting really pumped about the American Nystagmus Conference in Washington D.C. I can ‘t believe it’s only a couple of weeks away. Time has gone by so quickly!

There are two reasons why I am especially excited…

I officially have ANN permission to blog live while I’m at the conference. This means I can post pictures, videos, and talk about what’s going on at the conference while it is all happening. I hope that all of you will one day be able to attend an ANN conference, but for those of you who can’t make it this year, do not fear! I’ll try to document as much as I can so you can at least experience a little bit of it. I only wish I could attend all of the panels and discussions they have set up. It all looks pretty amazing…

The other reason I am very excited is that I will be participating at the conference! I have been asked to moderate a panel  of young people who have successfully navigated their way through life with Nystagmus. Sound familiar? Those are my kind of people! It’s a big honor to be asked to lead this discussion, and I am really excited to sit down with everyone and open a window into what it is like for a young person with Nystagmus. I think a lot of parents with young children who have Nystagmus will find this panel particularly informative. One of my goals at the panel (and with this blog) is to hopefully alleviate some of the fears that parents have when their child is diagnosed.

I think one of the biggest things I’m looking forward to at the conference is just to meet other people with nystagmus face to face. I have made a lot of shifty-eyed friends over the internet who I wouldn’t trade for the world, but I have yet come in to physical contact with someone who has the same condition as me. It’s funny, in some ways the role will be reversed for me. I’m so used to seeing other people react to my Nystagmus that I’ve never really given any thought to what my reaction would be. I have heard that it can be pretty emotional. I guess we’ll see 🙂

To all my shifty-eyed friends, let me know if you are coming to the conference! Can’t wait to meet you! And if you won’t be able to make it this year, let me know what parts you would be interested in. I’ll have to be your eyes this time. Ha, that will be a first!

Jo

 

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A Great Nystagmus Blog

Hey guys!

Life is crazy right now, my wedding is coming up (yikes!) so I’ve been VERY busy with last minute details. Work also always keeps me jumping. But I wanted to make sure I give you all a heads up: one of my fav blogs out there has recently been re-launched!

If you have been following The Shifty Eyes Blog, chances are you have already checked out this amazing nystagmus website  by a fellow shifty-eyed friend named James . He founded http://www.nystagmus.co.uk/ long ago, way before this little creation began. What’s great about his blog is that it’s not just his own musings and experiences (although that’s in there as well, and always interesting). This website hosts a forum for anyone who wants to talk about nystagmus, including people who live with it, their families, and even researchers who are involved in nystagmus studies.

It’s quite a community. While I love my blog and all of my shifty-eyed friends that follow me, sometimes you just need the support and ability to talk to multiple people who are experiencing the same things as you. The forum provides an excellent way to do this.

And after a brief down-period between Christmas and New Years, it’s back up with new content and all shiny and new looking! I encourage you all to go take a look and talk to people (if you haven’t already). I know we have a lot of new nystagmus-parents out there; here’s another great place for you to get some information and feedback.

Say hi to James for me!

-Jo

Personal Nystagmus Experience – Johnathan

Hello my shifty-eyed friends!

I’m coming back to you after some time off with an awesome personal nystagmus experience from our friend Johnathan. He originally left a comment about this brilliant blog (natch), but he shared so much of his own life with nystagmus that asked if I could repost it here. He graciously gave me permission. So without further ado…

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Wow I never even knew they had a website like this lol I was just bored an started web surfin. Its kinda cool knowing theres a support group for nystagmus. I wish I knew how to post something on here bc I feel as if I have an amazing story to tell. I do have congenital nystagmus with all the horizontal eye twitches an head movements and yes it affects me physically an mentally but Ive somehow fought through it. I was always teased as a kid an still receive it today at times but this has never stopped me from making many friends, having best friends, or even having many great girlfriends who were all btw absolutely gorgeous lol (Im very picky for some reason). Anyways Im 18 years old. I played football in high school where i received many scholarships but I was just a normal sized player with a little bit of talent nothin special I was actually undersized for my position which was quarterback an linebacker. It was bc I had more heart then anybody else on that field. My mentality was an always will be is the bigger they are harder they fall and Ive gained a lot of respect/friendships due to that aspect in me. Ive been a fire fighter since 16 an have received many awards from life saving awards to top runner of the year and last year I received fire fighter of the year and was the youngest person to ever do that. Jo Im sure this will surprise you more then anything else. I broke the barrier. I am a United States Marine. Not just any Marine either, My job is infantry which means Im a grunt fighting on the frontlines of afghanistan. Anything is possible you just have to have heart. Jo this is just a summary of what Ive been through. Im kinda new to this Ive never posted a blog on a website before. I have the whole facebook an myspace page get up but not like this. I wish there was something I could do to help others.

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Woohoo! Let’s here it for the Marines!

And in case you are curious, I asked about how he is able to do that. You should know that nystagmus is usually an automatic disqualification in the US military. But he fought it, and won, which is HUGE.

AND he’s a man after my own heart who doesn’t let the nystagmus stop him from doing what he wants to do. The fact that he chooses to use his abilities to risk his life and benefit other people makes him the best kind of hero in my book.

This blog is all about supporting each other and giving each other encouragement. All of you contribute when you interact on here and on the other amazing sites dedicated to nystagmus. Just sharing our frustrations and accomplishments with each other lets us know that we are not alone, and that we are extremely normal, capable people who can contribute to society just like anyone else.

Thanks Johnathan! You are helping so many others right now by just being who you are.

xoxo

Jo

Shifty Eyes and Memory

Ha! Check out this article from telegraph.co.uk:

Shifty eyes may be a sign of good memory

By Roger Highfield, Science Editor
Published: 12:01AM BST 05 May 2007

Moving your eyes from side to side for 30 seconds can boost your power of recall, researchers say.

Horizontal eye wiggles are thought to cause the two hemispheres of the brain to interact more, improving the ability to retrieve memories.

Scientists at Manchester Metropolitan University found people who made horizontal eye movements recognised significantly more previously studied words than subjects who did not make such eye movements. They also had fewer errors in their recall.

Dr Andrew Parker, whose findings are reported in the latest issue of the journal Brain and Cognition, said: “That such a straightforward experimental manipulation can bring about enhanced memory for studied information and lower the number of memory errors is quite exciting.”

The work suggests horizontal eye movements could be helping people to remember.

“We are conducting more research to clarify and extend the current findings,” Dr Parker said yesterday.

“It may help someone recall an important piece of information for an exam.”

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Cool, huh! Now, it’s only one study, not exactly about nystagmus and the publication isn’t scientific, BUT wouldn’t that be awesome if it were totally true? It’s like we have super powers 🙂

xoxo

Jo

3 Great Things About Nystagmus

Most of the time, I don’t even think about my nystagmus. Other times, it can be slightly difficult to live with. However, on occasion, there are some really awesome things about my nystagmus that I’ve come to love.

1. It’s a great conversation starter
At times I can be socially awkward (try not to be too shocked). However, there is always one thing I can talk about safely when I get to know someone. Some people ask, but others will notice without saying anything. Either way, it makes me confident to speak up because I know more than most people about that topic, and I’m always eager to make people feel at ease about it. I also like to make them laugh, leading into positive thing number two…

2. I have a cool parlor trick
Explaining my nystagmus to people can sometimes be very dry, and at times people don’t know quite how to react. They think maybe they should feel bad for me. To lighten the mood, I’ll say, “Wanna see something cool?” and then spin around in circles like a crazy woman. Which is funny enough on it’s own, believe me. I think if that were the end of my talent it would still be pretty hilarious. Or maybe I’m just easily amused.

But I digress. Once I stop spinning in circles, my eye movement increases so quickly and to such a degree that at that point, I really can’t focus on anything at all, I just see the world spinning in front of me. They go back and forth as far and as fast as they can go. I don’t really know why they do this; my spinning must aggravate it somehow. It’s pretty fascinating to see (or so I’m told) and people usually laugh out of amazement.

And all I have to do is spin around in a circle once more in the opposite direction to get my eyes back to normal. Like I’m unwinding 🙂

Now whether or not people actually think this is cool is irrelevant. When I do my little trick for them, they know that I am not ashamed of my shifty eyes, and that I take it so lightly that I can joke about it with anyone. I really think that’s what puts them at ease more than anything else.

3. It makes me different, in a good way
Not to get all after-school-special on everyone, but I really like that it makes me unique. It’s something you don’t see everyday. It can even be a beautiful thing, in an uncommon, off-centered kind of beauty, and isn’t that the best kind there is? Besides, don’t all girls want their eyes to be unforgettable? 🙂

There are more great things about my shifty eyes, but I think those are my favorites. To my fellow shifty-eyed friends, what do you like about your eye movement? Parents, what do you love about your children’s nystagmus? I assure you, it’s not all bad. Sometimes it can be wonderful.
Jo