SWAN UK theme of the week – Nystagmus

This week the theme for the SWAN UK is Nystagmus which according to the Contact A Family directory is

“ a term used for spontaneous oscillations of the eyes. The most common form of nystagmus in young children is congenital nystagmus (also called infantile nystagmus) occurring at birth or in the first few months of life.”

The following are excepts taken from Mike Hughes blog which you can read here

“Nystagmus is an involuntary movement of one or both eyes. Statistics are not definitive but it appears to affect between one and two in a thousand people.

Nystagmus leads to a tendency to turn the head to one side in order to find a null point where the shake is at its least and focus is easier. Often it’s that turn that creates problems rather than the nystagmus itself.

All there was to remind me of my nystagmus was the occasional discussion with someone to the effect that I couldn’t see something because, well, because I couldn’t see it, and yes, I was looking where they were pointing! It was just that my head wasn’t.

Retrospectively of course I can now see that my lifelong struggle to read the handwriting of other people was not just a minor foible. It was simply the case that someone with nystagmus can struggle to focus for long enough to discern the difference between a, o and e and probably some other letters too in the same way that we often struggle to work with a Snellen chart when forced to look at it through lenses that don’t allow for our null point

Sport in general is a struggle for anyone with nystagmus. Maybe I am just not very good at sport but over the years I have learnt that whereas I have absolutely no chance of participating in squash I can get by in a game of table tennis. Same size ball you may be thinking to yourself. So what can be the difference? Well, in squash it travels a much greater distance and requires constant refocusing. In table tennis it might move quick but it requires very little refocusing. It moves over a much smaller distance. This might not apply to everyone but it certainly applied to me.

One of the things that sitting in a darkened cinema did clarify for me was a specific side effect of having a null point. This was the moment I realised that, I prefer to be on the left!

What I mean is that my null point is apparently ten degrees off centre to the right so I turn my head to the left. Interestingly, this means that no matter what I am doing I prefer to be on the left hand side. I suppose this is logical but it manifests itself in very odd ways. I am never comfortable sitting immediately behind the driver. Now I know why! I prefer to sit slightly to the left of my PC screen. I prefer to sit slightly to the left of centre in the cinema and even when I am sat on a sofa I find myself preferring the left. I suspect I would have problems with Feng Shui!

The RNIB stuff suggests that sitting to one side somewhere like a classroom is of no assistance and can lead to a crowding effect in whatever you’re looking at. This is logically undoubtedly true. All I can add is that, in my case, it has always helped. It may be a false positive or a placebo but placebo is a very powerful and much misunderstood thing.

Oh, did I mention the nodding head thing? People with nystagmus often have some kind of nodding head syndrome whereby they are unconsciously in a constant battle to correct their wobbling eyes. Combined with the struggle to make and keep eye contact it makes social interaction a battleground occasionally rather than a pleasure. “Surly” rather than “concentrating much harder than you could possibly imagine”!

At work I really couldn’t function when my eyes were tired as the shake worsened and made the slowness to focus much worse. An understanding that this really did mean taking the regular breaks experts demand we take from our computers. The need for natural but indirect light i.e. not in my face as the eyes water and the attempts to stop this actually bring eye function to a halt for quite a while. In the absence of natural light then really strong artificial light. You’d laugh if you saw my house on this latter point. If I was following this to the letter then I’d move the study into the toilet.

Then we have the stuff around font sizes. Make it big and I won’t strain. Keep it small and, until this year, I would rarely complain (I am a very, very slow learner but I do at least stay learnt!). I will oblige by simply squinting around six inches from the screen. Yeah that works!

Did I mention I struggle with strings of zeroes? Have to turn them vertically to read them. Probably just as well I’m not a millionaire. I wouldn’t be able to keep up! The RNIB suggest that spreading out or separating long strings of digits can assist – using commas is the most obvious thing – but personally I’m good when there are lots of zeroes with or without commas, at least I think I am, up to a thousand. It’s when the numbers get bigger and include zeroes that it all goes wrong, commas or not.

Heading to work I have a choice of two buses. One is a double decker and fast. The other is a single decker and takes a circuitous route. I generally prefer the latter as, however enjoyable the working week may be, I don’t want to rush there, and, I get more reading time too. So, heading into work in the light Summer months there’s really no issue. I can’t read the bus numbers until the bus is virtually upon me but I don’t need to.

Coming home is slightly different. Again, light Summer months, no problem but, as the mornings and evenings go darker, it becomes increasingly harder to distinguish between buses. When it’s light I can wait at the one bus stop which has about five different buses stopping there because I can relatively easily identify mine from a distance.

As the light grows dimmer though through Autumn and into Winter I have to move to the bus stop around the corner where only two buses stop. The latter are single deckers but generally easily distinguished as being from two different companies. Granted the latter stop has no shelter but that could applies to anyone using it, and to the network in general, not just me.

I think this is nicely illustrative of nystagmus. The above is a small thing. A tweak to my routine and no more, but, I do have to think about it. The world of someone with nystagmus is full of such small adjustments. Thus my comment earlier about the disproportionate effect. Small things add up and pervade every aspect of your day. It’s often just a matter of capturing and defining your routines but it still has to be done.

As a child i’d had headaches. I now know that it was when my eyes were over-tired. I adapted seamlessly and unconsciously then by becoming an indoor, bookish sort of child minimising physical exercise. I also used to fall asleep in cars quite a lot as the headaches started. Now I understand that was because even the effort of watching the world go by for an hour out of a car window requires an amount of focus that can easily wear you out. Focusing on a book or something in the car instead was no less of an issue

So, you can see that nystagmus pervades almost every aspect of my life but all the things I have described are in themselves small negatives. There is nothing that say the parent of a newly diagnosed child should feel anxious about. It takes some thought to manage it, and emotional and physical support in areas of life that really aren’t obvious unless you understand the practicalities, but I got by even before I gave it that thought and acquired that understanding. I just get by better now. Hopefully the resources and personal stories like this one that are now available will go some way to informing of the many issues and convincing others that they can do the same.