Tag Archives: living with nystagmus

New Nystagmus Blog for Parents

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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

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Nystagmus Q&A

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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.

Difficulties with Nystagmus

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I hope everyone had a great Labor Day weekend! I worked on Sunday :/

I’ve started interacting on the forum over at www.nystagmus.co.uk (check it out, it’s an awesome place with awesome people). Someone commented that my blog comes across as entirely positive, to which my reaction is…

GREAT!!  🙂  🙂 

I’m so glad because I think that too often a diagnosis of nystagmus comes along with a feeling of impending doom. Which is too bad because seriously, nystagmus takes up maybe 1% of my life, if that (although, with the blog I think about it a lot more now, but I digress…)

So yes, I’m very glad that it is coming across as positive. At the same time, I do want this blog to be realistic. Nystagmus does come with some difficulties. Low vision is frustrating. It is something that has to be accommodated. So here is my list of frustrating things about Nystagmus:

1. I can’t read menus.
Not the kind you put in front of you, but the kind that appear behind counters at sandwich shops and McDonalds. Usually I’ll ask whomever I am with to read it for me. If I’m by myself, then I just stand awkwardly close to the counter. So annoying…

2. Driving
As much as I hate to admit it, driving is an issue. I wax poetic about this topic much more in another post, but let’s just say, nystagmus does affect driving.

3. Sometimes it’s hard to look people in the eyes.
I can tell when people notice my eyes, and my first reaction is to not make them uncomfortable. This means avoiding eye contact. Eye contact is a very important social behavior that you probably don’t think about too much. By avoiding eye contact, people can get the idea that you aren’t confident, or even that you might be evasive or not trust worthy. That’s where we get the meaning behind my beloved phrase “shifty eyes” (though I’m determined to take that one back ♥ )

SO, people with nystagmus are often stuck with the dilemma of interrupting the pattern of a regular conversation by the other person being distracted by the nystagmus, or avoid direct eye contact and risk offending the other person. Can’t win…

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There are other difficulties that come up from time to time, but these are the main things I struggle with.

But can I just say, these are mostly mild irritations. I know I sound like a broken record, but my life is seriously really really normal and great 🙂 Back to being entirely positive!

xoxo

Jo

Shifty Eyes and Memory

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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

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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