Author: Daniel Lewi

I am Dan and I joined the Nystagmus Network in 2016 as the Executive Information and Development Manager.

Do you want to ski like Josh?

Our son Joshua was born with oculo-cutaneous albinism in 2003. It was a surprise to both our families as no one on either side had any recollection of anyone in the family having albinism.

The thing that has affected Josh most is his visual impairment. His eyes let in too much light due to the reduced pigment and he has nystagmus.

Josh was diagnosed aged 2. We had no idea there was anything wrong. We wondered why his eyes moved from side to side but he had coped perfectly as a toddler, learning to do everything when he was expected to and generally being loud and laughing a lot.

“Where have been some mile stones in our 13 year journey so far, with many more to come I’m sure!” Jamie Fuller

The key for us is to build strategies for situations and approach everything with a ‘how can I do that?’ attitude.  Yes, we have to modify and adapt, but most of the time it works and even if we don’t ever do it again at least he can say ‘I’ve done that’.

We are now two years into senior school and Josh is in top sets for everything. He no longer has support in school and is fiercely independent. He uses an iPad and his teachers are aware of his needs.

The one area that remains difficult is team sports.  From an early age we never discouraged team sports, but directed Josh towards sports he could do with a group of people rather than in a team.  At the age of 9 Josh achieved his black belt in Tae Kwon Do. From a very early age he could swim like a fish. He has dabbled in other sports like kick boxing, but his main and true love has always been skiing.

Josh learnt to ski on family holidays from the age of 3 and immediately enjoyed the freedom and speed that came with it.  Year after year he became more competent and about 2 years ago he asked if he could race in competitions.

“All the things Josh can’t do well evaporate the moment he gets on the slope.” Jamie Fuller

Josh skis with me as his guide.  We communicate through headsets with me describing the terrain, the direction and obstacles to avoid.  Getting into competitive skiing was difficult. We approached our local indoor ski centre but they were, at that time, unwilling to take a visually impaired person in their classes. We then approached Disability Snowsports. We joined them every month for a recreational session but this was not enough for Josh, he wanted to race!

Through contacts at the organisation the Paralympic Team GB Coach became aware of Josh and after many meetings, tests and discussions Josh was advised that he was not visually impaired enough to be classified by the IPC.  So what now? Not visually impaired enough to be trained by that team and too visually impaired to ski without a guide.

We approached the ski race team at our local ski centre and asked if we could join them. We explained the situation, and they were very accommodating. Finally proper slalom race training began.  Training is great, but Josh still wanted to race! Many emails later and with the help of lots of other enthusiastic people we are now racing in able bodied competitions. We have to abide by their rules and Josh doesn’t get any allowances in time for his visual impairment, but he regularly hits middle of the group for his age, something he is very proud of and something that boosts his confidence.

We have seen Josh progress at such a rate through skiing. He can’t ride a bike at 10mph and yet he can ski at 40mph easily and freely.  Although Josh is awesome he is not alone, we ski with several visually impaired skiers, some far more impaired than Josh and they too experience freedom on snow.

“So there is something in this. I urge you to come and give it a go!” – Jamie Fuller

Do you want to learn to ski?

We have organised a few trial days for complete beginners and some sessions for those who already ski and would like to improve.

Learn to ski from just £11 per hour in Manchester, Hemel Hempstead, Milton Keynes or Castleford.

If you can already ski, string several turns together and stop confidently, we can offer monthly sessions of 1-2 hours for around £15 for you and your skiing guide.

Please contact us here to register your interest and we’ll let you know when and where.

 

No limits

This week the video blog at the Nystagmus Network features the amazing Josh!
 
Josh is a keen skier who loves to take part in ski competitions. However, he was once told that even though he has nystagmus, he’s not visually impaired enough to take part in disability races by the IPC. So, what did Josh do? Check out the video and find out….

A mum with nystagmus shares her story

I made my first contribution to the Nystagmus Network Focus newsletter after much parental cajoling and days, weeks, months, if not years, of adolescent procrastination, in the mid-1990s. To save readers from searching the archive, I’ve got what I consider to be mild nystagmus and bad short sight and astigmatism.

Contact lenses are better than glasses but even with them I can’t see the numbers of buses until they’ve whizzed past the stop. All right, there are a few other inconveniences, like not being able to drive, but you get the picture. Well, here we are a couple of decades later and I am a parent.

“ My parents were brilliant about my nystagmus. I have to say that, they’re reading this!” – Julia

My daughter is 18 months old and it was clear from early on that her eyesight was better than mine; a smile from her father across the living room that I would not have seen without glasses brought a response from our few-week-old girl. So far, so no myopia. Nor have we seen any signs of nystagmus, so we congratulate ourselves on the random allocation of genes. (My father has nystagmus, hence the fear of passing it on.) That didn’t stop me from wondering about what sort of parent I would have been if she had had similar eye problems.

But how to help her understand my eyesight? As she gets to grips with the world around her, I realise it won’t be long before she’s pointing to the sky and saying, “Mummy, what’s that up there?” and I’ll have to go through the checklist. “Is it a bird? Is it a plane? Is it a figment of your imagination or mine?” How do I convince her that she doesn’t need to sit as close to the television as I do or hold books as close? Parenting: a catalogue of unknowns.

As she grows older, she is becoming more interested in story books, rather than picture books with one or two large-print words per page. I’m already having problems reading the text while allowing her to look at the book too. It’s just like that you’ll-have-to-share problem I had throughout primary school; I could never get close enough without hogging the textbook. Fortunately, I know most of the books we’ve got by heart by now, and no one is able to complain when I get a turn of phrase wrong — yet.

My nephew, aged three and a half, has recently issued the rude reminder that I’m pretty ropey at ball sports. I could tell that he was getting frustrated with my lack of volleying skills playing badminton in Grandma and Grandpa’s garden. I shan’t take it personally but will make a note to try to improve myself before my daughter gets to that stage.

My parents were brilliant about my nystagmus. I have to say that, they’re reading this. They were, though – in all areas but one, and that is that I learned to play the flute when really I wanted to play the cello. As I remember it, I was coerced into choosing the flute. My mother remembers it differently, but I think the arguments were as follows: the flute is smaller and easier to carry and, crucially, it goes sideways so you can get as close to the music as you need. Plus, James Galway has got nystagmus and he plays the flute. Valid arguments, yes, but I still believe that the cello is basically better than the flute and I’m sorry I didn’t get to learn it when I was young.

I have a number of experiences as a musician, albeit an amateur, related to my eyesight that I may share in another piece. I might not wait twenty years to file that copy. The moral of this story, though, is that if my child, nystagmus or no nystagmus, chooses to learn an instrument, she has free choice. But if she picks something large like the drums, the harp or the double bass, she’ll have to negotiate that with her father, the driver.

“If my child, nystagmus or no nystagmus, chooses to learn an instrument, she has free choice.” – Julia

If you have a story you would like to share with the nystagmus community through our newsletter please get in touch with us here.

Meet our new Nystagmus Network volunteers!

Today we are excited to officially announce our new volunteers at the Nystagmus Network! Earlier this year we started a recruitment drive to find people who were passionate and committed to supporting the nystagmus community as part of our peer-to-peer support model.

The charity was inundated with applications, ranging from adults with nystagmus to healthcare professionals. Following a short review, we are delighted to announce that the following people will be joining the Nystagmus Network as volunteers:

  • Rachel Thomas who is a parent to a child with nystagmus
  • Elizabeth Jones who has recently qualified as an Orthoptist
  • Nikki Espiner who runs the Wobbly Days for Nystagmus Families Facebook group and has a child with nystagmus
  • Jenny Rose who has acquired nystagmus associated with ataxia
  • Julie Stewart who runs the Wobbly Days for Nystagmus Families Facebook group and has a child with nystagmus
  • Jamie Chapman who has congenital nystagmus
  • Sara Riggs who is a parent to a child with nystagmus
  • Penny Marsh who moderates the Nystagmus Network Facebook group and is a parent to a child with nystagmus
  • Leanne Leung who is an optometry student entering the second year at MCPHS University
  • Jen Martin who is based in Canada and will help us signpost families from North America to the appropriate support services and to offer advice

“Volunteers help us support our community!” – Richard Wilson, Chairman of the Nystagmus Network

How to contact our volunteers

Each of our new volunteers will play an important part in the work we do at the Nystagmus Network. They will be a direct link to the nystagmus community and they will be the main contacts for our new call back service the charity offers which can be accessed here.
Along with being very active on social media (such as our charity Facebook page) they will also use their experience and expertise to respond to queries submitted through our website here.

The benefits of our volunteers

One of the main benefits of this volunteer service is that anyone who contacts the charity will be able to speak with someone who completely understands their own personal situation. This means that an adult with acquired nystagmus will be able to speak to another adult with the condition, while a parent to a child with congenital nystagmus will be able to speak with another parent. Through this new peer-to-peer support model we believe we will be able to better support the nystagmus community.

We hope you will join us in welcoming all ten of our volunteers to the charity and we are sure they will make a big difference! If you have any questions about our volunteer service you can get in touch with us here.

Have a great day from everyone at the Nystagmus Network!

Fundraising for the Nystagmus Network

Our latest video blog features an interview by our very own Sue with two of the charity’s fundraisers! Gavin and Paula Birch recently held a fun day and football match for the Nystagmus Network where they were able to raise funds and awareness of the condition. Their daughter Freya was diagnosed with nystagmus when she was eight weeks old and they want to help the charity and other families in any way they can.

Everyone at the charity would like to say a big thank you to Paula and Gavin and if you would like to make a donation to their event you can do so here http://www.justgiving.com/nystagmusroyalqueenfc.

Check out our new nystagmus booklets!

One of our main objectives at the Nystagmus Network is to provide information and support to the nystagmus community. To achieve this we have been working hard reviewing all of our documents to make sure they are up to date, readily available and appeal to a wide audience.

Not only have we have produced brand new leaflets on nystagmus which we are busy posting out to eye departments across the country, we have also made all our publications for adults, children, parents and teachers free to download from our online shop here.

We want to make sure that everyone receiving a nystagmus diagnosis will know they can turn to the Nystagmus Network for support! If you can’t find any of our new leaflets at your local eye clinic, please let us know by clicking here and we will get in touch with them.

Wide range of topics

These documents cover a wide range of topics from font size to friendship, from coordination to confidence. Whether your nystagmus was diagnosed when you were a baby or you’ve only just discovered that you have nystagmus, the Nystagmus Network is here to support you.

One of our most popular documents is the newly updated ‘Wobbly Eyes’. The first incarnation of this booklet was produced back in the 1990s to explain nystagmus to a child and help them and their parents and teachers come to terms with the condition. The brand new version serves exactly the same purpose and has been designed to appeal to a child, gently outlining what it means to have nystagmus.

“As a QTVI I always recommend the Nystagmus Network to parents and schools where pupils have nystagmus. Great work at getting information out there.” – Janet

There’s more to come!

But we’re not stopping there! There’s much more to come. Your help in the form of membership subscriptions (you can sign up here), fundraising and donations, means that we will be able to continue our important work.

We’ve already begun drafting a brand new book, with the working title ‘Nystagmus explained’. Written very much in plain English and layman’s terms, this book will cover the more medical aspects of nystagmus such as diagnosis, causes, heredity and lifelong effects. It will serve to explain some of the clinical terms you may hear from your ophthalmologist and give you the confidence to engage in discussions with them.

Far from being sent home with just that one word ‘nystagmus’ ringing in your eyes, our publications will empower you to take control, build your knowledge and manage your life with nystagmus.

“Brilliant. Thank you. Been trying to explain things to my six year old” – Marilena

Volunteer for the Nystagmus Network

The Nystagmus Network is on the look out for more volunteers to help us support our growing community!

We believe that a peer-to-peer support model will make a huge impact on everyone in the nystagmus community. This model is based on support being provided by people who understand the impact of nystagmus on the various groups the charity supports. We want our volunteers to empower parents, teachers and adults with nystagmus and help us build a team of nystagmus specialists to support further the work of the charity.

The volunteer role

We believe that it is important that we have volunteers who are specialists in particular areas which the charity supports. So, we are asking for those people who are willing to answer any emails and / or phone calls from people from the following groups:

  • Parents – babies
  • Parents – school
  • Advocacy
  • Teachers – early years
  • Teachers – primary
  • Teachers – secondary
  • Adults – acquired nystagmus
  • Adults – congenital nystagmus
  • Fundraising
  • Events
  • Overseas

All volunteers will be required to adhere to our volunteer policy and they will be given training to undertake their role.

If you think you can make an impact and would like to volunteer for the Nystagmus Network please complete the form below. We will be in touch once we have reviewed your application and thank you for supporting the Nystagmus Network!

Application form

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