ANN Conference 2011 – Kick Off

Wow!

The ANN Conference started this afternoon. Today was mostly checking in and meeting everyone; the official workshops etc start tomorrow. But I gotta tell you, it’s been really amazing so far.

I started at a round table for adults with nystagmus. And can I just say, I have never felt more comfortable with a group of perfect strangers in my entire life. There is just an instant connection; an understanding. It’s not that I feel particularly self-conscious when I meet people without nystagmus, it’s just always there in the back of your mind. You get used to expecting that look of recognition when people realize that your eyes move unexpectedly. Here, I feel an incredible freedom to look around anywhere I want and not have to potentially have that moment with someone . I don’t know, it’s hard to explain.

And that’s just it: I don’t have to explain. Everyone just… knows.

I can’t wait to get started tomorrow. I’ll be blogging straight from the conference, so there will probably be a few posts throughout the day. I will not be blogging during the Youth Panel because I’ll be leading discussion 🙂 but I will post something about it later in the evening.

I’ll also try to pick up a few more personal nystagmus stories from individuals. Maybe I can even recruit a guest blogger for down the road. If you are at the conference, hit me up people!

Talk to you soon!

Jo

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

 

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 – Mike

You guys have to read this, it’s pretty awesome.

Our friend Mike introduced himself in one of the comments on here, and told me he was writing about his personal experience with nystagmus, which I think is great. The more we share, the more we can help each other.

So he wrote this great post called “Nystagmus? Oh, you mean like astigmatism!” on his blog. Here’s his description:

*     *     *

This article is no more than my personal version of a story you can find elsewhere on t’internet from others in the same, and often a far worse, position than I. It is a work in constant progress. At my last look I think it had undergone around twenty five significant revisions. You can surmise from this that perfection is some way away!

The “Shifty Eyes” blog is a good place to start if you want accuracy and brevity with a positive and informative slant.

Editorial thoughts

What follows is extremely detailed as I have tried to do a number of things I haven’t seen elsewhere.

Firstly, I have covered my entire life from diagnosis upon starting school to date. That’s (ahem) four decades. I could have skimped but the act of writing itself triggers memories and new insights and I want this to be my one and only definitive statement.

Secondly, I made a conscious decision to put in as much detail as possible. Basic descriptions of nystagmus are easy to find. Detailed descriptions of the effects are less so. The effects vary between individuals so there never will be a party line but many people pass through life with no diagnosis, or a diagnosis but no insight into the impact, so I wanted to highlight those things I attributed to other things like short-sight but which should rightfully be attributed to nystagmus.

Thirdly, I wanted to try and capture how the many tiny aspects of it can vary over time. What seems major as a child is inconsequential now but vice verse.

Fourthly, I made a conscious decision to make this a work in progress. However, the idea was to get it out there and tidy it up later. It may well turn out to be akin to painting the Forth bridge.

Finally, I have yet to enable “Comments” for this post. I wanted to see where my thoughts took me. Once I am satisfied I have something near finished and I have linked appropriately elsewhere then I will welcome comment.

*     *     *

I’ve been reading over his post again, and realized I had forgotten how honest, forthright, and hilarious it is. This is probably my favorite personal account of life with nystagmus that I’ve seen yet. And that’s not just because he gives this little blog a shout out (Woohoo!).

No, I like his post because it’s very unaffected. As for myself, I unfortunately have a bad habit of squishing a moral in with almost every story. Sometimes I feel so protective of my fellow shifty-eyed friends that I forget to just tell my side of things the way it is without trying to teach anyone some sort of lesson. Mike has the gift of letting his true personality just exist while contemplating on his life experiences with nystagmus. Sometimes that’s the best way to try to explain to others what it’s like.

It’s a long account, and at times hilariously tangential, but completely worth the read. So to my shifty-eyed friends and family alike, I encourage you to go and read his excellent  post.

 xoxo

Jo

New Nystagmus Blog for Parents

There’s been some great responses to this blog out there, but I think this has to be my favorite. A parent was inspired to start their own nystagmus blog from a caregiver’s perspective. It’s called simply, Nystagmus Blog.

How awesome is that?!

I get a lot of feedback and questions from parents, and I know there is a lot of fear out there. Honestly, I think a nystagmus diagnosis is more traumatic for the parents than it is for the child. From a child’s perspective, they won’t really know what it’s like not to have nystagmus, so they are surprisingly resilient. For parents, on the other hand, it’s difficult because they can never truly understand what their child is going through. It can be a frustrating journey.

I encourage all the parents out there to check out this blog. It’s always good to have a community of people who know what you are going through. It’s also got some great advice and general info for parents.

Best of luck!

xoxo

Jo

Nystagmus Q&A

We need a good place  for questions and answers here at the Shifty Eyes blog.

I know a lot of people reading this blog are parents and loved ones of people with nystagmus. Sometimes it can be hardest on those who do not have shifty eyes. It’s very difficult to understand what it is like, especially for those with smaller children. I mean, I have a hard enough time articulating my experiences with nystagmus. It can be almost impossible for children who may not even realize that they have it.

So, if anyone has any questions for me on what it’s like to live with shifty eyes, please feel free to comment me here.

xoxo

Jo

P.S. My expertise lies in day to day living and social situations. And by “expertise” I mean I live from day to day and encounter social situations :p I’m not a doctor, so I’ll do the best I can with medical questions, but you should always always refer to a specialist. If I can’t answer, I’ll certainly try to help you locate the information you need.

Nystagmus and Driving

This may be one of the most sensitive topics for people with nystagmus. As you can imagine, anything that affects your vision may affect your ability to operate a vehicle. Let’s talk about driving and nystagmus in general, and then I’ll tell you a little more about my experiences.

Can people with Nystagmus drive?

It depends on three things:

  1. How extreme the nystagmus is. It may be that a shifty eyed person needs to get a note from their optometrist/ophthalmologist saying that it is safe for them to drive.
  2. General vision. Many times nystagmus is accompanied by low vision. A person with nystagmus will need to take the same eye exam at the DMV as any other person would do. This test can be taken with glasses on, but that will mean that the driver would need to wear the glasses at all times while driving.
  3. Where the person lives. It’s my understanding that in the UK, the driving requirements are much stricter than they are here in the US, and it’s much more difficult for people with nystagmus to get a license there. Also, every state in the US has different driving requirements.

Do I Drive?

No, I do not. Can I drive? Technically, yes. In the past I have gotten my permit, and have driven a great deal. However, I have never gotten my license. Just because I can drive does not mean that I am comfortable driving. Because of the way my particular nystagmus reacts to movement, fast glances and checking blind spots are challenging. I’ve been in some close calls before. My worst nightmare is not seeing someone in time, making a movement, and then getting into a huge accident on a freeway that kills somebody.

So, for this reason (and others not having to do with nystagmus) I have chosen not to drive for the moment. This may change someday, especially if I have kids and need to drive them around. But even if I do get my license, I will probably keep driving at a minimum

Does not driving affect my life?

Yes, it does. This is probably the single greatest nystagmus-related challenge for my personal life. I live in Los Angeles, which is probably one of the biggest pro-driving societies in the world. Not driving can be seen as being irresponsible. It also means that the public transportation system is often times lacking. In order to have any kind of personal life, I depend on getting rides from other people. My friends have been great about this, but I know that sometimes it can be frustrating for other people. I try to pitch in for gas if I’m being toted around a lot.

I do have a fantastic boyfriend who is very understanding about my not driving. I won’t lie though; it has come up as an issue. I can imagine how frustrating it is when there is a family event at his house that he has to pick me up and drive me back for. It also affects how much he can drink when we go out, which isn’t fair to him. He is very kind about it, and has let me taken my time with the driving issue. He never complains to me, and for most of the time, it’s not a problem. But I can see that it’s frustrating sometimes. I struggle with a lot of guilt about this.

As far as work goes, luckily, I work just blocks away from my house, so I have avoided the challenge of getting to work for now. Whew!

So yes, driving is an issue all shifty-eyed people have to deal with. It’s a sensitive topic. No body likes to think they can’t do something simply because of the way they were born. We appreciate all the understanding and shifty-eyed love from all the “normal” sighted folks out there 🙂

xoxo

Jo

*** (Hey all, there are updates to my driving journey here and here. It’s good news!) ***

Does Nystagmus make my life suck?

In a word, No!

Or rather, if my life sucks, it’s for entirely different reasons. Like, I overdrew on my bank account (again) or my dog ate my shoes/Starbucks cup/box of chocolates that I thought was high enough up on the table but it turns out he can jump up there.

Now of course, I can only vouch for my own life. I’ve only very recently started to look for and read about other people who have Nystagmus (mostly through the internet), and I was seriously shocked to read how some people have had a really hard time coming to terms with their condition. I’ve given some thought to this, and have three things to say:

  1. Everyone has different experiences in life whether they have Nystagmus or not. Some people’s childhoods are more traumatic than others. And I’m pretty sure Junior High sucks for everyone. It may be easy to blame Nystagmus for many of life’s socially difficult situations.
  2. I’m lucky to live in a place where bullying is frowned upon and accpeting different kinds of people is taught at a very early age (thank you southern california). This isn’t true for everyone. I imagine life experiences really depend on what environment you are in.
  3. My Nystagmus is not as severe as others may be. Something that I did not know growing up is that there are many different types of eyes movements, some of which may be more noticeable than mine. Also, my null point is not particularly awkward; I look just slightly to the side. For other people who have either more intense eye movement or a more difficult null point, Nystagmus becomes a more visible condition, something that people will notice right away.

It may seem by looking on the internet that more people have a hard time with it than those whom it affects peripherally. My hope is that the majority of people with Nystagmus actually live normal lives, and the reason you can’t find those experiences online is because they have less need of support groups than those for whom it really is a challenge every day.

Now back to my life. Why didn’t it suck?

My Family

Growing up, my Nystagmus was a non-issue. Looking back, I think my parents did a FANTASTIC job of not letting me feel like I was different than anyone else. We didn’t ignore it: certainly every time I went to the eye doctor it was something that was addressed (mostly just her saying “no changes” and reminding me to relax while I read the E chart). My mom would pester me about using my null point too much (because I would often favor one eye, which was bad for the eyesight in the other eye, not because she didn’t want me to use my null point) but other than that, there wasn’t much of a need to talk about it. Really, the astigmatism that often comes with Nystagmus was more of an issue because I had to wear glasses, but astigmatism is very common. Other kids in my class had glasses for the same reason.

My Friends

I don’t know if I just lucked out, but I have never not made a friend because of my shifty eyes. Certainly children are curious about things that are different, but because I never thought of it as a disease or something that made me a freak (thanks mom and dad), I just explained what it was when they asked, and that was about it. For the most part they thought it was pretty cool. Also, most of the time when people get to know me, they completely forget that I have it to the point where they don’t even see the movement.

Example: I went to elementary school with one girl for 9 years (k-8thgrade). She was a friend, and we grew up going to each other’s birthday parties. After grade school, we went to separate high schools, and I didn’t see her again for probably 5 or 6 years. Then, we ended up both working together at the same day-care center. It was great to see her again, and it’s always fun to work with people you know. We worked side by side all that summer. One day, one of our co-workers brought up my Nystagmus in a passing conversation. She then replied, “Oh yea, I totally forgot you had that!” Even after 5 years of not seeing me, and then working with me for a few months, she STILL didn’t notice my Nystagmus! And the movement never stops, so I know it’s not because my eyes didn’t move very much.

It’s a weird phenomenon, but it happens all the time. The people close to me totally forget that I even have it.

In reality, I myself hardly ever think about it. It’s just an accepted part of my life. My vision has always been the same, and I probably think about it as much as anyone thinks about their vision. My boyfriend has really sensitive eyes (they get very dry and red, especially when he is tired) though his vision is pretty much perfect. He thinks about his eyes more than I think about mine.

So yea. Life’s pretty normal for me.

xoxo

Jo

What is Nystagmus?

Nystagmus simply means involuntary eye movement. Here’s the almighty Wikipedia article that goes into more detail about the different kinds of nystagmus. I’ll try to summarize a little more succinctly here.

Just a note, as you can already probably tell by my reference to Wikipedia, I am in no way an expert, medical or other, on this topic. I am simply someone who lives with the condition and has done some research. If you or someone you know has nystagmus, you should see a medical professional for accurate information.

There are two kinds:

Acquired nystagmus is when you acquire the condition later in life

Congenital nystagmus is when you are born with the condition (or it’s diagnosed shortly after you were born). Most people who live with nystagmus (like me) have this kind.

What does it look like?
It can be pendular (smooth movement) or jerky, horizontal or vertical, and sometimes even circular.

My particular nystagmus is pendular horizontal, so that means it’s mostly a smooth movement from side to side, though it’s quite fast.

Is there a cure?
The short answer to this is no, there is no cure.

That being said, there are a lot of current studies and research about nystagmus, its causes, and possible treatments. People can have nystagmus for a variety of reasons (albinism, genetics, certain diseases) so treatments that may work for acquired nystagmus won’t necessarily work for congenital nystagmus.

Think of it this way: if someone has a cough, trying to get rid of it will depend on why they have a cough. If it’s a common cold, maybe they take cold medicine. However, if they have tuberculosis, cold medicine won’t make their cough go away.

Null Point
Most people with nystagmus have a null point, or a position in which they hold there gaze that reduces the movement. This position varies from person to person. Many times, rather than the eye movement itself, it’s an awkward null point that will cause a lot of difficulties in the classroom or social problems. Though there is no current cure for nystagmus, there is a surgery that can slightly adjust the null point to a more manageable position.

My null point is a gaze slightly to the right, which means many times in order to reduce my eye movement, I’ll turn my head slightly to the left to look at something in front of me. I’m lucky, because most people wouldn’t even know that I’m using a null point.

Other Resources
To learn more about nystagmus, there are a couple of great organizations:

The Nystagmus Network
A national, self help organization based in the UK established in 1984 to:
     Raise awareness of Nystagmus
     Provide information and support to people with nystagmus
     Promote research into nystagmus

The American Nystagmus Network
A nonprofit organization founded in 1999 to serve the needs and interests of those affected by nystagmus. It is an outgrowth of the Nystagmus E-Mail List introduced on the Internet two years earlier to provide information on a wide variety of topics pertaining to nystagmus.

Both of these organizations have great websites where you can learn a lot more about nystagmus and find specific support. There are a lot of other good resources too, but these will get you started. I’ll try to post a more extensive list later.

Well, that pretty much gives you a broad idea of what nystagmus is. If you have any questions, always feel free to ask!