VI skiing this Bank Holiday weekend!

We’re delighted to confirm another opportunity to ski with the Nystagmus Network and the Outspan Rebels VI ski team.

On Sunday 26th August we will be running a two-hour ski lesson at £20 per person at Snozone, Milton Keynes.

From 2:30pm to 4:30pm we will have a beginners’ session on the starter slope and intermediates’ on the main slope.

Beginners – group lesson with Snozone qualified adaptive coaches

Intermediates – hints and tips at the top of the main slope with Ski Guide, Jamie Fuller and Alpine Race Coach, Glen Greener

Sorry, no sledging this time.

Visually impaired adults and children (over 4 years) with fully sighted friends/family members welcome.

If you’d like to come along please contact us today or email Jamie Fuller at [email protected]

 

Guest post – Harry’s null point surgery decision

15 year old Harry has undergone the Anderson Kestenbaum procedure this summer. Parents often ask what null point surgery involves. Thorough consultation with the ophthalmologist and the surgical team are key.  Harry’s Dad, Ian, asked us to share his son’s experience.

Ian, writes:

My son, Harry is now aged 15 and was born with idiopathic nystagmus. Luckily for us all, Harry has relatively good vision and has a null point which enables him to control the nystagmus and see. The downside to this null point is that he has a 40 degree head turn.

My wife and I made a decision when Harry was young that we would not consider surgery on his eyes and that if this ever happened it would be because Harry wanted to and was of an age that he could sensibly make that decision.

As Harry grew up he tried wearing glasses with prisms to help straighten his head posture, but a combination of constantly losing them and being conscious about wearing glasses with prisms meant that this wasn’t a particular success.

Harry went to the opticians about a year ago on his own and during his chat with the optician the topic of head posture came up. The optician made a referral to Ophthalmology. Over the next 12 months we had multiple meetings with the senior ophthalmologist and after many discussions and questions we agreed to pursue the Anderson Kestenbaum procedure for Harry.

Please see Ian’s next post for just some of the questions the family had and the answers they received from Harry’s consultant.

Null point surgery is not for everyone. Please seek advice from your ophthalmologist. The Nystagmus Network does not endorse or otherwise any particular medical treatment. We are simply sharing one family’s experience.

Harry pre op.

Introducing Harry’s story

This is Harry. He’s 15 years old. He has nystagmus and, as you can probably tell from the photo, he also has a fairly marked head turn associated with his null point. This summer, Harry and his parents decided it was right for him to undergo surgery.

Known commonly as ‘null point surgery’, because it seeks to move the null point to a more natural, central position rather than off to the side, the Anderson Kestenbaum procedure is sometimes suggested by ophthalmologists where head turns are very marked. Medical professionals do not claim that the surgery can cure nystagmus, simply that it can enable the patient to look straight ahead afterwards.

The procedure involves detachment and reattachment of the eye muscles. As with any surgery, there are risks involved. The result is usually a more natural head position so that the patient can look straight ahead to focus on faces and objects. Sometimes they report that they can read a line or so further down an eye chart. Follow up surgery is sometimes needed to refine any correction. Some people perceive a slowing of the eye movements as a result of surgery, though this is thought to be anecdotal and could simply be due to the change in the position of the null point.

Harry has now had his surgery. His family asked the Nystagmus Network to share their story. Over the next few days we’ll be posting reports from Ian, Harry’s Dad, as Harry recovers from his null point surgery.

Null point surgery is not for everyone. Please seek advice from your ophthalmologist. The Nystagmus Network does not endorse or otherwise any particular medical treatment. We are simply sharing one family’s experience.

Visual impairment and mental health

Children aged between 8 and 11 years old who live with a visual impairment are three times more likely to develop a mental health problem than children with no visual impairment, according to new research.

The Nystagmus Network has been aware of this for a long time and always highlights the social and emotional aspects of nystagmus with parents and teachers.

Please click the link to read the full article in Optometry Today.

Advice from Glen on apps and phone tech

Glen is a VI blogger, friend and member of the Nystagmus Network. Our delegates enjoyed his extremely useful workshop at Open Day last year on building social networks.

More recently, Glen has turned his attention to another of his areas of expertise: assistive technology.

In his latest blog, Glen shares a video follow up explaining how to make the most of your iPhone.

Read Glen’s blog and watch his video here.

Celebrating National Sunglasses Day!

As photophobia is a frequent accompaniment to nystagmus and ocular albinism, we’re happy to join in a day of celebrating sunglasses and raising awareness of the importance of protecting your eyes, whether you have nystagmus or not, from damaging UV rays.

We’re enjoying some beautiful, warm sunny weather across the whole of the UK right now, but for some the sun means discomfort and it can damage your sight.

Always remember to protect the eyes from bright light, inside and out, with UV protective sunglasses (make sure you check the label before buying), caps and sun hats, parasols, canopies and window blinds.

How amazing is Bradley

We couldn’t resist one more ‘amazing’ nystagmus success story. Not everyone with nystagmus can drive, but Bradley has turned driving into his philosophy on life.

My name is Bradley. I’ve had nystagmus since birth. My parents found out about it when I was 4. As a child, I was in and out of hospitals. It was tough for me as a kid with a funny eye. I wasn’t very self conscious at the time and didn’t think I was any different to the other kids, but there were limitations and I got bullied by some kids. I never let that get me down, though. My teachers were great, making sure I was right up front in class and giving me print outs so I had everything I needed.

My family never really understood my condition. That’s still very much true to this day. I hardly know about it myself. I’ve lived with it all my life, so I don’t know any different. People ask me what it’s like, but I don’t know how to answer. I say that words on a wall become lines or scribbles to me. I can’t make them out and it tires me trying too much.  But, if I’m on a cliff and there’s buildings in the far distance, I can see them. I keep my phone close to my face. I can’t recognise faces until quite close, so, if I’m out trying to find a friend in town or in a pub, I may walk straight past them. The only way I can describe it is seeing people’s figures but no face until I get closer. Then, as if a fog has cleared, I can see them. I hate going to fast food places. I can’t see the menu, even with glasses. I find they don’t really help me much, so I spent most of my teenage years not wearing them at all.

I hated my eyes. I got to a point where I wouldn’t want to meet new people as I really didn’t like the way I looked. But all of that aside, I’ve realised I’m me and that’s all I ever need to be. I don’t need to be afraid of what people think.

Ever since I can remember I’ve always loved cars. I never expected my condition could prevent me from driving. The day the doctor told me I’ll never drive tore me apart. I wanted to give up. That was it for me. But, thankfully, my mum got me back up on my feet. She always told me “It doesn’t matter what people say. You can do whatever you set your mind to. If you want to drive, prove them wrong. Show them you can do it.” I’ll never forget it. I took her advice and, as soon as I could, I got myself a job at a local bus depot which paid for my lessons and a car. I was determined. When my test came around, I failed, but I failed for forgetting to shoulder check. I passed the sight test! When I was ready, I took my test again and passed. I wanted to cry, I was so happy.

All my life they told me “you can’t”, but I did. Getting my licence was the best feeling in the world. I do have down days like the rest of us, but if you push through them you can achieve the impossible. With me, passing my driving test has opened up a huge opportunity to get into my chosen career. I recently started a vehicle panel beaters apprenticeship. My goal is to have my own business, buying and selling cars.

I’m very fortunate to have stumbled on my career and my mother’s wise words have all come true. Against all the odds, I’ve set myself on the path I’ve wanted ever since I can remember. I’ve never seen my condition as a disability, more as a challenge. I have come so far and achieved the unthinkable for someone who has a similar condition.

As much as I’ve got used to my eyesight, I do wonder how it would be to see through someone’s eyes for even a minute. But this is the way I am and I accept it.

If anyone tells you that you can’t, just challenge them, because, once you prove that you can, I guarantee you won’t feel like you have a disability. You’re just like everyone else, no matter who tells you different. Be who you are. Don’t change for anyone and, if a challenge comes your way, fight through it. We are fighters and we’ll do anything we put our minds to.

Please see our free to download booklet, Nystagmus and Driving, for information on the legal and medical requirements.

How amazing is Amanda

Amanda is a long time supporter of the Nystagmus Network UK and our unofficial US spokesperson. As a professional freelance writer, who also has nystagmus, she is well placed to tell her amazing nystagmus story …

My Nystagmus Journey: Fifth grade diagnosis and beyond

Fifth grade – that’s when my life changed because of my nystagmus; that was the year I got my large print books and was registered as a student with a visual impairment.

Before I tell you about my reflection of that year, we must go back into my history. My mother knew something was not right with my vision from the time I was born. She took me to several eye doctors who basically said the same thing – Nothing is wrong with your child. For now she can read the print that is provided; just make sure she sits up front and rests her eyes when needed.

As I entered the school system and started to struggle with my school work, the doctors and teachers started to change their diagnosis. The first issue they found was that I had cerebral palsy; to fix this difficult issue I had all different kinds of therapy to help improve my muscle function. Then, in second grade, because I struggled with reading, writing and spelling I was found to have a learning disability called Dyslexia. This helped solve part of the problem, except for the fact that I still could not see well.

In fourth grade, the medical doctors started saying that I needed large print books and that my vision was poor. My teachers also started to really notice the problem. So, during the end of the school year, teachers started doing more advanced testing and that testing showed that, indeed, I needed large print.

My mother was so excited that her fight with the school system was successful and that I was going to receive the large print textbooks I needed. I, on the other hand, was not happy about this. I knew that I was different.

The next year came and so did the large print books. They were quite large and heavy. I surprised my teachers by being able to read better despite my Dyslexia. My grades even improved. This improvement did not come without a cost; I was teased by some of my classmates and some of my teachers were slow to understand all this new information. I still did well in my fifth grade year.

A year and a half later we moved from Texas to Florida. The school system for the visual impaired did things differently. They started taking away my large print books and they sent me to a low vision specialist who prescribed low vision aids. I was confused. The reason they did that was to prepare me for the adult world. For the first year I played their game and used my low vision aids, which made them happy. However, it made me unhappy, because I felt so limited on what I was able to see. The years passed and, in my last year of high school, I was almost rejected from the program because I was not using my low vision aids and I kept advocating for my large print when needed. During my last program interview, I told them why I did use my low vision aids. The program staff did what they could to help me until I graduated from high school.

After high school, I went to college with the help of two other programs and I was very successful. Now, with the help of the American Nystagmus Network and the Nystagmus Network UK, I’m sure I will be successful in my freelancing career and personal life.

 

How amazing is Gary?

Here’s Gary’s sporty nystagmus success story …

Since 2014 I’ve been playing county cricket for Warwickshire Visually Impaired Cricket Club. The club comprises players of all ages (my shirt number is 49 – the age at which I made my debut) and varying levels of sight. Several of our players are registered blind and we also have two players with albinism who have nystagmus.
Blind cricket follows most of the laws of cricket, with a few modifications. The ball is white and bigger and contains ball bearings to assist the players with a lower level of vision. The stumps are bigger and the boundary is slightly shorter. Totally blind players are allowed to take a wicket with a catch on the first bounce. Each team must have a certain number of players of each sight classification. My classification, awarded after a high street optician sight test and referral to British Blind Sport, is B4 (high partial).
The game has taken me around the country and I’ve played in two T20 Finals days. We have also won the County Championship twice.
I’ve relished this belated opportunity to play cricket again, especially as I had to give up the “red ball” game at primary school due to risk of injury.
I would recommend the game for anyone who likes sport, regardless of their age or gender as we have mixed teams.
More information can be found on the Blind Cricket England and Wales website.