Nystagmus.co.uk the facts and personal experiences combined. washington university washington

Like many people with nystagmus, I have a terrible posture. Best universities list we all sit very close to our computer monitors and if you’re like me, and have your nose pretty much on the screen for a good 10+ hours of the day, then you’re almost certainly leaning forward most of the time. No matter how hard I try, I hardly ever manage to sit at a computer with me back straight. I no longer wonder if I will have back problems when I’m older, instead, I wonder when…

My back, is one of my motivations for exercise. Obviously, I also want to be considered ‘fit’, but these days, that appears to be most people’s aspirations! Anyway, I’m no expert and I really don’t know whether, running, weight lifting, stretching and other exercises help with this, but it feels good, so it must be doing some good, right?

Weights – quite a few people have told me to use free weights.

Remembering my experience of that at pervious gyms I had been to, I wasn’t keen on the idea. Why? Simply because I struggled to see the weight written on them! I used to have to bend down and get really close to them… of course, if you’re a little self-conscious, that sucks. However, at my current gym, the numbers are pretty large and easy to read whilst standing! If only it was that way in all gyms.

Treadmills – in my current gym, they have tvs built into them; great! Well, until I try use the touch screen to change the channel, volume or bring up some statistics about my run. Being touch screen and trying to multi-task (run and use the screen), I often mishit the buttons, but I suspect everyone suffers from that. The fonts are quite large, but I still have to be quite close to the display to read it (closer than I would when running normally).

Rowing – this is one exercise I quite enjoy like. Again, similar problems – I quite like to know how far I’ve rowed, but no matter what position I’m in whilst rowing on the machine, I never seem to naturally get close enough to read the screen. Same old, same old.

Imagine yourself at a football match, you’re sat in the stadium, intently watching the game. What do you do when a goal is scored? Jump up and start cheering?! (well, I think that’s what most do)! How did you know your team had scored? You saw it.

Now imagine you have a visual impairment – your naked eye is unlikely to yield sufficient visual acuity to allow you to see the ball in play, you therefore have to rely on the commentary. Fortunately, it’s usually pretty good. However, the frustrating thing is, when at an actual game and the crowd starts cheering, you have to wait to find out from the commentator. The only trouble is, sometimes the people around you are too excited and soo loud, that you can’t hear!

Fortunately, you can get a good feel for the atmosphere and the tone of the crowd. Chris bevan, BBC sport correspondent, went to a swansea football match wearing a blindfold, in order to experience the match from the perspective of a blind person. His article about his experience makes a good read.

If you’re not one of the 350 million weekly viewers of top gear, then it’s pretty likely that you’ve at least heard of it. For those that don’t know, top gear is a BBC TV series about high performance cars – most guys I know are really into fast cars… but am I?

In the UK, in order to drive a car, you must be able to read a standard number plate from 20.5 metres (67 feet). Regardless of the degree to which I tried to kid myself when I was 17, nystagmus can put a dampener on ones hopes of driving. In my case, I’ve resigned to the fact that I can’t drive and probably won’t be able to drive for the foreseeable future. Obviously, I hope treatments will advance, but for now, I accept I can’t drive. There are however, some lucky people with nystagmus who can drive; I actually know of a reasonable number, so having nystagmus doesn’t exclude the idea completely.

Most people with visual impairments find the late teens very troublesome; around 17/18, everyone around you is learning to drive. It’s tough. University rankings global wherever I go, people seem to start talking about fast cars at some point and I’m just not interested. If I can’t drive, why should I be? The problem then is, you can feel like you’re shut out of an entire conversation – it’s a double edged sword.

Not everyone needs to drive. Thousands of people who have driving licenses, choose not to drive. Take london for example, the majority of people use public transport on a daily basis – they have the buses and tubes to get around london. I imagine most would agree that trying to get somewhere in central london by car can be a nightmare. Oh, and we’d better not forget to mention the congestion charge starting at £9 per day! Finally, everyone has to pay insurance and for some new drivers, this can be in excess of £1,000.

It was humorous! It was funny! It wasn’t all just about fast cars and it didn’t make me feel too uncomfortable, the humour took away the reminder of my inability to drive. Don’t get me wrong, I’m still not massively into it, but the one episode I’ve watched was interesting and I’ll be more open to watching them in the future.

Steven reid donated his shirt to raise money for the charity nystagmus network, a charity which supports people with the complex eye condition nystagmus, because his young son harry is affected by the condition and he is hoping to give children like him a brighter future.

Previously danny ray from surrey was the highest bidder for one of steven’s millwall shirts through an auction on twitter. Since opening an account at http://justgiving.Com/ steven-reid12/ family, friends and supporters have donated over £4,500 for nystagmus network.

Nystagmus network encourages research into and raises awareness of nystagmus (which is characterised by involuntary movement of the eyes). Earlier this year the charity gave a grant of £8,000 to a research project at the university of leicester. We also have a range of resources for schools and hospitals to help parents and their children understand what it is like to have nystagmus.

For more information about nystagmus and the nystagmus network contact; john sanders, information and development manager, tel: 029 2045 4242 or 0845 634 2630, email: john.Sanders@nystagmusnet.Org web: http://www.Nystagmusnet.Org/ A note from james:

The nystagmus network is reliant upon fundraising and donations. I’ve seen first hand, the massive difference it can make. Research is expensive. Fact. Providing training, support, facilitating research and raising awareness require time and effort, for which NN has volunteers and an employee. If you have time on your hands and can volunteer or if you fancy raising some money, check out their website to get involved!

I have had my monocular for a number of years, but it’s only recently that I have begun to appreciate it. (I don’t like to appear ‘different’ and can be quite stubborn at times). At the end of the day, I guess you have to go over the potential embarrassment factor at some point! So, what is it good for?

Travelling – recall the departure boards at your favourite train station or international airport. Now imagine that you can’t read the text on them (even when you’re standing as close as you can to them, generally getting a really sore neck at the same time. Washington university law school ranking that’s no good when you only have minutes before it departs. Yes, you could ask someone and take the risk that someone is kind enough to tell you the right platform or gate number, but you don’t always find someone that’s co-operative, rather someone that looks at you as if you’re stupid. It takes confidence to ask and generally, that’s what gets knocked within seconds of asking the question! Thus, this is the perfect occasion to pull out a monocular! I find them great for this sort of thing.

Classroom/lecture theatres – at my university, there was a lecture hall that had a capacity of several hundred students; it was massive. Now, my usual position was in the first couple of rows (not always the first, again, through not wanting to appear different). Sometimes, I would use my monocular, but there was a single main drawback: I had to keep it in my hand, moving it to my eye as I looked up and away again when I went to continue with my note-taking. Other than this, it was very useful, especially when all the seats near the front were already taken when I got there!

Seeing the view – of course, not just visually impaired people would find a monocular useful for seeing scenic views and specific objects in the distance. In fact, when I don’t have my monocular, I sometimes even take photos of distant objects/scenes, just so I can zoom in and take a closer look myself! Where did I get it?

Interestingly enough, the NHS in the UK isn’t all that bad – my GP referred me to the local low vision clinic and I was given it there, along with some funky glasses (more about those in another post). If you’re not lucky enough to be able to get free low vision aids like this from your health service, a quick google should reveal a number of retailers that sell them.