Nystagmus Open Day in Manchester

The Nystagmus Network (NN) are holding their annual open day in just a couple of weeks!

Date:            Saturday 20th October 2012
Time:           10:00 – 16:00
Location:   Manchester

This ia an annual event and is usually attended by about 150 people, including people with nystagmus, parents, friends, teachers, medical professionals and researchers. The event tours the UK and is being held in Manchester this year.

NN Open DayThis always proves to be quite a fun event and unites people with nystagmus from around the country. Infact, this unique event usually attracts people from Europe.

This year, the line up includes topics like, research, education, employment, causes, cures and treatments. Aside from the organised sessions, there are usually plenty of opportunities to chat with others during breaks, over lunch or in the discussion group sessions.

If you’re interested in coming… it’s not far away and tickets are going fast, so better to buy them sooner rather than later! Hopefully, I’ll see some of you there!

More details and tickets are available here.

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Walking 15 miles for nystagmus research

Ok, so I’ve finally taken the plunge! On Friday 21st October, I’m walking 15 miles, in the dark (not my idea!) to raise money for nystagmus research. You all know the score, so I won’t harp on about why. The target is to raise £7,500, which is being matched by another charity to facilitate a whopping £15,000 grant.

A number of applications have been submitted by universities around the country, so watch this space.

If you’d like to sponsor me, you can do so via my JustGiving page.

Many thanks,

James

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Gymming it up

I’m one of those people that is and has been a member of a gym for several years. Despite this, I’m not the fittest of people and still don’t go on a regular basis; I seem to go through phases.

Like many people with nystagmus, I have a terrible posture. 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?

Let’s put the reasons aside for one moment. Does having nystagmus affect me in the gym at all? Well, yes, but…

no obstacle is insurmountable – something to “always remember, never forget”.

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.

So, same old story for all the machine weights, but I always feel less conscious about getting closer to them, whilst it can still be unecessisarily awkward!

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.

If only I had an excuse for situps and pushups. I guess I won’t even go into how I manage to play squash…

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How blind fans sensed Swansea’s success

Do visually impaired people (including those with nystagmus) support football teams? Yes, of course they do; they are no different to anyone else… or are they?

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.

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Top Gear – why I wasn’t a fan

Fast Cars on the BBC's Top Gear

Fast Cars on the BBC's Top Gear

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?

Now, most, if not everyone that knows me will tell you that I’m not really into fast cars. In fact, most will tell you that I’m just not into cars full stop. For me, there is one thing that gets in the way: nystagmus.

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. 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.

You have to look on the upside though…

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.

Right, getting back on track… Top Gear – my perception, until last week, was that it was a TV series about fast cars – something I wasn’t interested in and generally shut out. Well, I watched part of an episode. Now, my view has changed.

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.

Having had conversations about this with other people with nystagmus, who also felt the same way, I would encourage them to watch an episode. See what you think… it might not be as bad as you think!!!

Find out more about Driving Eyesight Requirements in the UK.

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Nystagmus Open Day 2012 – Date Announced

Every year, the Nystagmus Network hosts an open day for anyone wanting to find out more about nystagmus. The details this year, are as follows:

Date:            Saturday 20th October 2012
Location:   Manchester

It’s a great opportunity for people to meet others in similar situations to themselves and to find out more abouve nystagmus. The event usually caters well for everyone; people with nystagmus, friends, family, teachers, medical professionals and researchers. There are usually presentations covering research into nystagmus, the social aspects of having nystagmus and how to support people with nystagmus.

The general feedback is that one of the most rewarding things about the event, is meeting others with nystagmus or others in the same situation, e.g. other parents. There is a lack of available information and this annual event, is a key opportunity for learning more and asking those ‘dumb’ questions – everyone’s happy to talk about it! There’s also researchers and professionals on hand!

Keep an eye out for further information; you will need to register in advance to book a place.

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West Brom’s Reid, does it again

West Brom’s Steven Reid raises money for nystagmus again! Great to have some high profile interest in nystagmus!

NN press release – 28th February 2012:

Not only did his team win on Saturday but West Brom fan Mark Hayward topped the weekend off by winning the framed shirt worn by Steven Reid in the Baggies victory at Wolves.

Steven Reid Raffles Match Shirt for Nystagmus

Steven Reid Raffles Match Shirt for Nystagmus

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.

Richard Wilson, chairman, Nystagmus Network, said:

“Congratulations to Mark and Danny, we can’t thank Steven enough for his support. We are a small charity and every penny counts and will be put to use for the 1 in 1,000 people with nystagmus.”

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!

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Success – let’s hear about yours

Some people think that nystagmus can ruin someone’s life – I dispute that! I acknowledge that having nystagmus makes life a little more trying than it might be otherwise; full of small hurdles, but none too big to be overcome.

Does nystagmus prevent people from achieving success? No!

Sometimes those hurdles don’t even exist, sometimes they do, but with the support of family and friends, I’m sure anyone with nystagmus can succeed above and beyond their expectations!

Skydiving

James about to descend 15,000ft back to Earth - skydiving!

Some examples of where people with nystagmus have been successful:

  • Running races – 5km, 10km, half marathons and full marathons
  • Sailing
  • Fishing
  • Actors/actresses
  • Surf instructor
  • Receiving employee of the month awards
  • Sky diving
  • Popular band members (e.g. Black Eyed Peas)
  • Qualifying as a teacher

Do you have a photo representing success? Care to share?

I would like to start building a collection of photos representing the success of people with nystagmus. See above for an example of me sky diving. If you have a success photo that you are happy for me to share, then email it to me at webmaster@nystagmus.co.uk, along with a caption and I’ll make use of it!

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My Monocular

Ok, I admit it – I’m a man with a passion for gadgets and more specifically, electronics. Interestingly enough, there is one simple gadget that sometimes, I wouldn’t want to be without – my monocular.

My Monocular

My Monocular

For those that don’t know, a monocular is like a miniature, lightweight telescope. Monoculars are used by many people with visual impairments to help see distant objects.

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. 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.

Don’t be afraid of your appearance – once I got over the issue of using a monocular, it became a great aid. It’s definitely something I’d suggest people with nystagmus try out!

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Researcher climbs for nystagmus

Viral raises funds for nystagmus

Viral raises funds for nystagmus

It’s not often that you find a researcher so passionate about their field that they volunteer to climb thousands of feet to raise money for the associated charity. Clearly, Viral Sheth is one of those rarities.

Kilimanjaro is the highest free-standing mountain in the world and is an impressive 5,895m above sea level. This is Viral’s challenge.

Viral is a member of the nystagmus research team at Leicester University. The team is well known throughout the world of nystagmus for it’s varying research into the eye condition and particularly renowned for it’s research into the use of drugs to alleviate the symptoms.

The University has been fortunate to be awarded a number of research grants from the Nystagmus Network and now they are doing their bit to help fund future research.

“On the 5th January 2012, I will be embarking on my journey. It won’t be easy as I won’t be able to shower for at least a week, I’ll be living off cold baked beans and tins of sweetcorn, I’ll have no access to the Internet so won’t be able to keep updated on Leicester City’s progress up the Premier League (!) and I anticipate my big ol’ clown feet to be coated in bruises and blisters!” – Viral

Research isn’t cheap; many research projects, including the drug trials that have been taking place at Leicester cost tens of thousands of pounds.

Perhaps Viral’s efforts will bring us one step closer to a viable treatment…

GOOD LUCK!

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