Helloooo out there! I’m Jo, the founder and sole blogger (so far) for the Shifty Eyes blog.
A bit about me:
You can always check out my About page, but for those who don’t feel like clicking the link, I’ll just tell you again. I’m a young person who is trying to navigate through newly acquired adulthood. By trade I’m a corporate paralegal, by night I’m a superhero. I also happen to live with a condition called Nystagmus.
Ok, I’m not really a superhero.
A bit about Nystagmus:
The most basic definition is “involuntary eye movement.” There are many different forms of Nystagmus, of which I will not go into great detail here. Mine is called “Congenital Nystagmus” which is a fancy term that means I’ve had it since I was born or shortly after. My particular eye movements are pendular; they move in a smooth horizontal motion, very quickly back and forth. The condition is permanent. There is currently no cure or even effective treatment. It’s difficult to explain Nystagmus and what it’s like to live with it in a paragraph, which is why I have dedicated a whole blog to this particular aspect of my life.
Why a blog?
Turns out, there’s not a lot of shifty-eyed love out there. Only in the past 15 or so years have there been any organized support or information out there for people living with Nystagmus and their loved ones. While these organizations are great when it comes to learning about the physical condition, there is not a lot out there that explains what it’s like to live day to day. Most shifty-eyed people live their entire lives without meeting anyone else who knows what it’s like.
This blog is for all of those people who have Nystagmus but who don’t know anyone else going through the same experiences. It’s also for parents of children with Nystagmus who want to know what it’s like to grow up with the condition. And for everyone else out there, who knows? You may know and love someone with shifty eyes, or you may in the future. I’ll probably also insert my opinions about life and the world in general here and there, because hey, it’s my blog.
xoxo
Jo
The Shifty Eyes Blog 
nice blog just found out my 1 year old son has been born with this and its nice to find somewere that i can get info about it thanks will bookmark your page
It’s nice to meet you Michael! I’m so glad you like the blog. I was hoping it would be a good resource for parents 🙂 Be sure to let me know if you have any questions.
xoxo
Jo
Hi there.
Well there I was putting an article together for my own blog about my own experience with Nystagmus and it finally dawned on me I should do a WordPress search for that very word and look what I found.
Excellent site and, as you might see when I finally publish my very waffly personal history with Nystagmus, my experience very much chimes with your own.
I’ve added a link to it on my site. I already had the .co.uk site.
Once I’ve outlined my history I intend to do a follow up not dissimilar to the thing you’ve done here in terms of listing the specific effects on me.
Mike
Hi Mike,
That’s great, thanks for the link.
I’ve read your post, and I very much related to the delayed self-realization with nystagmus. It was much the same for me. I’m still coming to terms with what exactly in my life has been affected by this condition.
I have so much to say about it that I’m going to do a reaction post and link you, so keep an eye out. It’s such a relief to meet fellow shifty-eyed friends and compare notes 🙂
xoxo
Jo
Hi Jo,
Thanks for that. I can’t believe I wrote so much. It got a bit ridiculous. Probably too waffly. However, it is still a work in progress so I am adding even more stuff about my nystagmus and
– public transport
– reading
– listening to music
– wearing spectacles, and,
– typing
I am hopeful I’ll have added this by the end of the week so the article you kindly read may look even longer soon.
Mike H
wow im really surprised that i can find a person with same condition as me. i have never ever find a person with nystagmus around me. my doc told me a person born with this condition is a chance of millions. i guess this is the beauty of internet. i really hate this condition i got as it causes problem and inconvinience every single day in my life.
I’ve had nystagmus since birth (plus corrected strambismus) and it can be so difficult to talk to normal sighted friends and family about it! I CANT READ THOSE GOD-FORSAKEN MENUS EITHER. Everything you said about having people read them to you and choosing not to drive are so parallel to my experience it made me wanna cry. Driving is such a guilt issue, especially with family who are used to you functioning pretty well and can’t understand why you’d choose to be such a burden to everyone.
I’m really excited to find this blog!
Actually, I’m an art student working on a zine all about things I’ve mis-seen and about day to day problems with nystagmus (and 20/200 vision).
Thanks for this, it’s a great encouragement!
-Sarah
Dear Jo,
I stumbled upon your website and I honestly think what you are doing is awesome. I have congenital nystagmus which was diagnosed when I was about six months. Reading your blog makes me feel like I am not the only person that has to deal with this problem on a daily basis. While I do drive I limit myself, mostly to school and around my town, which is really small, but I have had to give up things I love because of this disorder, the top being basketball, which became to hard to play under pressure in high school.
I am really excited for to read more of your blog and congrats on getting engaged, that really give hope!
Hi Jo,
I really like your blog. I also have congenital nystagmus, but my form of the condition is fairly mild. I have uncontrollable eye movements, but only when I am not looking straight forward. Because of this I can function fairly normally by turning my head a lot and looking straight at something.
The eye shaking does grow substantially stronger and includes looking straight forward when I am tired or there is poor lighting. I do drive, but I have to be extra careful looking at side mirrors and blind spots, and it requires a lot of head turning.
I really appreciate your blog, it is nice to have the word spread about this rare eye condition. As with most people I have yet to meet someone in real life who has it, so it’s nice to connect with others online!
-Dwight
Ah, shifty-eyed love!
Richard,
I know, isn’t it great to meet more people with nystagmus? It’s so unique, it’s hard to find people who truely understand!
Sarah,
Yep, if I could sum up most of my frustrations with nystagmus with two words they would be “menus” and “driving”
I’d love to see your zine! Links?! That’s a really hilarious idea. One time I was in the car with some friends near halloween, and on the side of a building was a sign that I thought for sure said “BOO 4 SPOOKY” and I was like, what in the heck does boo for spooky mean?! But turns out it was a telephone number for the place “1 800 4 SPOOKY”. My friends never let me forget that one…
Miranda,
Ah, sports. We need more coverage of that topic on here. I’ve heard so many different things about sports from people with nystagmus. Some people seem to have no problem, and some people can’t play to save their lives.
And thanks! I’m pretty excited!
Dwight,
I’m glad you are enjoying the blog! I’m also glad that you are able to be so high functioning, it gives hope to other people is well. It’s always nice to know people with nystagmus who drive. It’s possible!
Yay for shifty-eye friends!
xoxo
Jo
Hi Jo,
We were just informed that our 4 month old son has Congenital Nystagmus and I’ve been quite emotional! He had no signs of vison problems until last week when I noticed his eyes moving back and forth while I was giving him a bottle. I’m happy to read your blog after reading so many negative things on the internet. Keep up the good work!
Thanks,
Cheryl
Hi Cheryl,
Welcome! I’m so glad if this blog has given you any sort of comfort. I know right after the diagnosis can be a very emotional time. I encourage you to check out the resources page to find other places where you can connect with other parents and people who have nystagmus. We have a wonderful community!
xoxo
Jo
Hi Jo,
Thank you so much for your website, it is no nice to read someone who is positive about nystagmus.
My son Jake is now 6 months old and has been diagnosed with nystagmus. He has been seen by different doctors and opthalmologist and I always believed his case was a “transient” one just because nobody in both our families have ever had any type of eye condition. Unfortunately at 5 months old the doc said “the nystagmus is here to stay” and it’s been very hard since then. I’m not sure what to expect for the future, can he go to regular school, will it be tough with other children looking at him as the “different one”. What were your experiences growing up? Is your case hereditary?
Also he was born by ventouse delivery, I read that this could be a cause too? And finally have you considered surgery?Botox?
Thanks again so much for being so uplifting!
Noemie
Hi Noemie!
I’m glad you like the blog 🙂 I know the time after diagnosis can be an extremely difficult time for parents, so I hope this blog comforts you, and kudos to learning as much about it as you can. I think the two biggest things that help emotionally are gaining knowledge about nystagmus and gaining the ability and platform to talk about it. I see that you have started a blog. That’s wonderful! I’ll put you on my blog roll, and if you don’t mind, I’ll probably post a little something about your blog so that other parents can see it too. As you’ll learn, we have an amazing community of shifty-eyed people and their loved ones out there 🙂
As far as my personal experiences and my opinions on medical options, I think I’m going to make a couple of new posts on that. There is too much to say for a comment. I’ll quickly state that I don’t know what caused my nystagmus, and I have never gotten treatement, surgical or otherwise. If you explore this blog a little, you’ll catch a glimpse into what it was like for me growing up, and I’ll be sure to post soon about my school experiences again, both socially and developmentally.
Good luck with everything!
xoxo
Jo
Jo, thank you for your answers and for being so comforting. I will definitely look further into your site and read about your growing up experiences. Feel free to mention my blog anytime, I will focus on blogging after every doctor’s and hospital appointments so this could help parents of young children who like me are just finding out about this condition.
Thanks again!
Noe
Jo-
LOOK! I read your blog! It is pretty cool, and it’s really helping people. Great Job!
-Deb
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 recieve 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 recieved 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 recieved many awards from life saving awards to top runner of the year and last year I recieved fire fighter of the year and was the youngest person to ever do that. Jo Im sure this will suprise 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.
Welcome Johnathan
Wow, I actually am very surprised you are a Marine! I thought nystagmus was an automatic disqualification. Well, a big fat THANK YOU for being awesome and fighting for our country! I think you are an inspiration. It’s hard to find people with nystagmus who have used it as a positive influence in their lives. It’s very easy to let it be a barrier, but it doesn’t have to be that way. I think by just making this comment you are helping give others encouragement. Would you mind if I put this comment in a regular post?
Haha, I’m picky too :p
Ha your very welcome :). Nope I wouldn’t mind at all. It is an automatic DQ but I fought to get it. I had to get a waiver for it but its possible you just cant give up.
Hey,
Wow, I’ve lived with nystagmus all my life and I’ve only just come across this blog…
It is very interesting to read everyone’s posts, because I can definitely relate–I can’t read menus either, hah!
Actually the thing that prompted this search was my flight medical today. I’m a pilot and I had to go in to get my medical certificate renewed, and there was a new doctor in. After nearly failing (or actually failing) the eye test, the doc had me sit on the patient bed thing and used that little light thing to take a look at my eyes. I recognized immediately the look of confusion, and before he could find a way to politely ask me, all I said was “yeah, my eyes shake.” He then continued on with the standard 21 questions “what’s that called?” “why do they do that?” except it was the educated medical version “does the shaking come from your central nervous system?”
Anyways, I’m moving into university on Monday in a new place and it’s going to be a pain to start all over with the “stop doing that, it’s freaking me out!” or the “whoaaaaaa, your eyes are on crack!”
I guess I will appreciate my friends at home more who already know, who already understand.
Well, it is nice to know that there are other Shifters out there. I can’t wait until the day I meet another one and they don’t have to ask why my eyes shake because they already know.
Wow! I am so impressed, I have a 17 yr old Son who was diagnosed with Nystagmus when he was just 5 months old. I was told then that he would not be able to do things regular kids participate in ( sports, driving etc). He has been in glasses for the last 16 1/2 yrs. I have surfed the web in search of a blog/site such as this and have not found until now. I wish I could have had better information for the last 15 or so yrs. I had to take my Son out of high school due to issues he was having with his education. I am home schooling him now and working with him to take the GED. He has no interest in driving as he does not feel confident with the depth perception and lack of street sign visibility. He worked for about 4 months but had issues seeing the screens for food orders etc. I guess my question/thought is …. is there any help per the goverment for him if he has to take public transportation and job wise do they have resources to help him place in a job where the employer will work with him on his vision. If any one has any knowledge it would be greatly appreciated.
I am so happy to have found your blog. I am a 43 yo female who was being treated for neck issues when I was sent a vestibular therapist and was diagnosed with nystagmus 2 weeks ago. I have had vertigo and nausea all my life. I thought I had some sort of Attention Defficet Disorder because when my symptoms are stonger I am completely unable to concentrate. I have always tired easily while reading and in areas of great congestion. I only wear glasses for reading since about August. Im in an emotional state about finding that there is a reason for this feeling I have always had. I cant believe it was not discovered prior to this. In fact, I spent 10 years in the Army and always shot my rifle with both eyes open. I have been wading through all the information I can find. But most information seems to be from individuals who have more sever symptoms. If I might ask…is it common for people to let there eyes go out of focus just to get a moments rest? Thank you for your blog, I am grateful.
sounds like symptoms of multiple sclerosis. Have you ever had an MRI on your brain?
Hi our little girl Scarlett who is 8 months now has been diagnosed with nystagmus. We first noticed the eye movements when she was about 8 weeks old . It’s still hard some days when I think about what the future holds for her but the blogs I have read today have given me hope for her. Thankyou so very much
Hi our little girl Scarlett who is now 8 months old has been diagnosed with nystagmus although we still don’t know what type, they believe it is possibly idiopathic (hope I’ve Spelt that right) . We first noticed her eyes moving back and forth at about 8 weeks old and took her to the doctors. They were absolutely no help but referred us to the specialist at the local hospital. It’s been an extremely hard few months for us at a time when we should be enjoying our beautiful new arrival … We have good days and bad days when we think what the future holds for her and although the hospital tells us that it is quite a common disorder nobody that we speak to outside of the medical profession knows anything about it. It’s taken me a few months to be able to read about nystagmus on the Internet as the first few months u felt like I had been hit by a sledge hammer, however after reading your blogs today gave me the first feelings of hope I’ve had in a long time. I think it’s all the waiting to see how she will be affected that’s the worst but reading your experiences had given me a clearer in sight. Thankyou all xx jules
Jules04- I too have a child who was diagnosed with Nystagmus at 6 months old. He has worn glasses since 6 months old and he is now 18 years old. We have dealt with the ups and downs of this condition. It has been pretty easy going as he was in private school so the teachers knew him and what his eye condition and limitations where. Public High school was a big struggle for him and so then I now home school him and he will graduate in a few months. The biggest downer is that he is not able to drive. He has driven with us so he does know how to drive but he does not feel confident enough with the depth perception. He has his good days and bad days with dealing with his condition. You and your husband just need to be patient with them as they grow and just understand what the limitations are. There are different severities of the condition so everyone deals with a little issues with it. I urge you to be strong and not let this condition hender your child in what they want to do in life. They say you lose one of your 5 senses and the others come on even stronger, and I feel this is true my Son is an awesome musician and loves all kinds of instruments- he hears a song then picks up the guitar, drums, bass and can play the song. Just LOVE your child to the fullest and be there when they need you. Best of Luck- Erin
Hi Erin thanks for your reply your actually the first person I have spoken to who has been through what we are going through at the minute. You must be very proud of your young man and I hope Scarlett has a similar future ahead of her. I’m sure she will. Thanks for your kind words ofwisdom x take care jules and Scarlett x
Jules and Scarlett,
You are welcome I too had a hard time finding any one going through what we did. I have just recently found this Blog and love to see what people are talking about within their life experiences. You are more than welcome to email me direct if you ever have any questions in the future. I have a very supportive family so they have been my rock when it comes to this condition. Erin ♥
My little girl was diagnosed with nystagmus at two months and albinism at three months of age (just last week). When I found your blog I was terrified about what the future would hold for her. But your positive words shows that it is possible to raise a confident and fearless superhero woman in spite of the challenges that life may hold. Thank you so much! I do hope you keep posting as I’m certain your writing is a great source of hope and reassurance to many. Catherine
Hi it’s jules and Scarlett back again!! Hope everyone is doing well? Thought u would give u all an update of how scarletts getting on now she is at the grand old age if 17 months!!!! Well what can I say. My princess surprises me every single day and is definitely the boss in this household. She is walking perfectly talking the odd word now and shun and is generally into everything. She loves animals and loves to laugh:) we hardly thunk about nystagmus these days and her wobble has nearly disappeared!!!! It is more like a quick flick when she’s tired and she has developed a very slight head tilt but if u never knew about her condition you would ne’er notice these things. She was eventually diagnosed with idiopathic nystagmus at about a year old and we have our next appointment in January which is a test for glasses ! One of our biggest surprises came only a couple of days ago when she spotted a couple of birds sitting on the roof across the road from where we live . Now she has a fascination with any type of bird. Compared to how we felt when she was first diagnosed to now feels like it happened to someone else and I hope that anyone in the same position as we found ourselves in all those months ago gets some comfort from this post. Take care and I ll post an update in a few months time :)))
Hi! I just started reading your blog. I have aquired vertical nystagmus, due to Multiple Sclerosis. I had it in 09 for 7 days…couldn’t even see my hand in front of my face…also EXTREME vertigo. I had a relapse in June of this year and had another flair with nystagmus. it wasn’t as bad, because I could atleast see some up close, but I could not drive. I am 30 and have a 6 year old. After 3 months, it got some better to the point that I can drive, but I still deal with the spinning sensation any time I turn around, or try to look down a grocery aisle or at anything to the side of me while I’m walking…strange, I know. I can see at a distance straight ahead. I also deal with the many other MS symptoms, including fatigue and muscle soreness and weakness. But I can’t really explain to ANYONE, what it’s like for my eyes to bounce up and down…to not be able to see clearly or normally. I can’t imagine if you all have had it since birth, and not know what it’s like to see clearly or be able to drive. I’m horrified by this condition. I’m glad I regained at least 60 percent of my vision, but sometimes I feel like I will lose my mind with this horrible condition 😦 And no one understands. They think since I can drive and look normal, that I must be ok. But, I’m not. I struggle every day. At least I can watch tv now to get my mind off of it for a couple of hours. I remember when I could actually focus on the screen for the first time! I still find myself looking at things to the side. I know people think I’m crazy sometimes. And I stumble and run into things because of the vertigo. Thanks for this blog. It’s so good to know their are other people who understand, although I wish to GOD, none of us had to live like this!!
Thanks tons for the blog, Jo! I am 34 and have had nystagmus all my life. As the youngest of four and the only person with nystagus in my entire family, I can absolutely relate to the sentiment of feeling sort of alone as a person with this condition. In my family as a baby, it was referred to as my “dancing eyes”. Since then, I’ve done just about anything people without nystagmus do, probably because I fit into the category of people who were told decades ago “you have nystagmus”, not much else said, and was expected to go on and live my life. I do wear glasses and also have an astigmatism. I drive, I’ve played sports (none terribly well, but doubtful I can pin that on my eyes only), I went to college, I work (use a computer all day), I got married and have 2 boys. It’s not until I really reflect on my life and think of the small but meaningful ways in which nystagmus affects my life. I am returning to college to improve my career prospects and find myself thinking of how the nystagmus would affect different career choices. I’ve just recently discovered in my Microbiology class that nystagmus may not mesh well with looking at things in the binocular microscope. I just can’t get the images to “meld” together and end up having to squint and look into only one eyepiece to see anything ok. When I had children, I secretly feared my kids might have nystagmus too and stressed a bit during those first few months when babies are still not good at focusing. I’ll admit some relief when those little guys finally mastered their eyes and returned my gaze (null point slightly to the right) with big brown eyes, steady, looking back. Reading the blogs when your wedding was upcoming reminded me of worrying about my wedding. As much as I love my husband, I dreaded having to “stare” at him during the parts where you’re reciting your vows! I don’t like having to stare at anything for too long that stares back and that would be in front of a big group of people! Needless to say I worried for nothing, wedding was just fine. I am just so appreciative of your efforts with this blog and appreciate this forum. Look forward to reading more to come!
Hi ,this is dip here) frm india ! I m 17 yrs old and have INS since birth, to speak of my early years, they actually went quite smoothly ok, i was average in studies and ‘ actually everything else’ , inspite of this disorder , i was actually the class monitor, cricket captain, basketball team member ,soccer team ( CB ) and the class leader of the most prestigious school of our locality, ( abt that cricket part , i could hardly hit a ball ;P , but was a decent baller ) ,yeah it is true i had to face quite a lot of sceptism for many mommentary inabilities due to my considerably weak eyesight and my ‘ dancing eyes’ ( as remarked by my haters behind my back ) but i alwayz bypassed such stances with a few sad reflecting momments on myself and as unimportant, ineffective remarks ,Towards the end of schoolife i did go a little below the popularity radar, but then again . I was the one making it happen so, coz i lost a considerably high amount of dioptres in , C-o-d mulltiplayers and facebook ( of course 😉 ) , to fuel this stage , i also suffered frm a depressed kind of mindstate , due to , reasons like , what the future holds for me .and if i will ever be able to live a dignified lile,
Right now i am in jr college , and leading a kind of bittersweet life , of which i would love to speak some other day ,bdw . For all parents out there with children suffering with this disorder i would only say ‘ let them be themselves and yeah dont make them self-consious of their condition on a regular basis, this will only hamper their natural mental growth . And yeah dont be extra-firm with them regarding education or other visually challenging tasks, rather support their aims and dreams , coz the real struggle with life wìth nystagmus starts not during childhood but only at adoloscence and teenage ,
Really Appreciate your patience in reading my account,:)
Just found this blog! Love it, can’t get enough. My 20 year old daughter has nystagmus. We plan on going to this years conference 2013. I’m so excited for my daughter to be able to meet others with nystagmus. I see Jo hasn’t posted in awhile. I hope to hear from her soon.
Nancie
I am the mother of two boys with nystagmus, 18 and 15 yrs old. I see there haven’t been any recent posts. I hope you are well and I hope to see some posts soon.
Is this blog still alive?
Hi all- I just started having nystagmus in July of this year. It started when vertigo began. The vertigo is virtually gone. I continue to battle the nystagmus, but I continue to lose the battle. I have had side-to-side, up and down and even circular motion. I grew up with voluntary nystagmus which was a quite fun way to entertain the other boys and gross out the girls. I can still do it. I just found out a younger brother has had it since age 21 and two of his children have had it since they were very young. I have also had a neuromuscular disorder since birth. I am now using a wheelchair most of the time. I just turned 60. Since my adult daughter has had concerns she is showing symptoms of the neuromuscular disorder (Charcot-Marie-Tooth, the most common disorder you have never heard of), I have begun to try to further define what kind I have. There are over 70 subtypes. As I have attempted to find out more about the nystagmus, I have had a neuro-opthamologist suggest I may have MS, based on an MRI. He has seen white areas in my brain, apparently a frequent sign of MS. I get a spinal tap next week, the definitive test for MS, according to him. I have a neurostimulator for bladder control. This was implanted last Spring. I have searched the web and can find nothing linking these devices with nystagmus. I am wondering if anyone has ever heard of these being linked? There are numerous neurostimulators to help with many symptoms. I am having a really hard time with this. I have not driven in over 3 weeks. I am finding it harder to read print and I am even having a harder time reading on the computer. Unlike many people I have communicated with about nystagmus, I actually do better after dark. My niece does not drive at night. Thank you, Jo, for this blog. And thank you all for putting up with this long post, especially since it is my first time.