Living with nystagmus – Page 13

Mike explains nystagmus and benefits at Open Day.

#YouMadeItHappen – Mike

This year on #YouMadeItHappen Day we’re celebrating the nystagmus heroes of 2019 who’ve really helped make a difference for the nystagmus community.

Mike is a professional benefits expert who also happens to have nystagmus. He is always ready with advice and guidance which he offers freely to Nystagmus Network members. He also writes our guide to nystagmus and benefits.

A regular at our annual Open Day, Mike lends his time, support and expertise to Nystagmus Network members every day of the year.

Thank you, Mike

Download the latest version of Mike’s guide: DLA, PIP and Nystagmus, here.

#YouMadeItHappen – Patsy

This year on #YouMadeItHappen Day we’re celebrating the nystagmus heroes of 2019 who’ve really helped make a difference for the nystagmus community.

Patsy is one of our newest volunteers. It’s thanks to her that we were able to start up our virtual support group for people diagnosed with Acquired Nystagmus.

Living with AN herself, Patsy is well aware of the frustrations of getting a diagnosis and any advice or treatment for the condition. She is championing the cause of AN, asking the researchers all your most searching questions, supporting others and giving them a voice.

Thank you, Patsy

If you or someone you know would like to join our virtual Acquired Nystagmus support group, please contact us today.

Can I tell you about Nystagmus?

Nadine Neckles wrote the book ‘Can I tell you about Nystagmus?’ so that her young daughter, who has nystagmus, could live in a world more nystagmus aware.

‘Can I tell you about nystagmus‘ is a useful book for both carers of, and people with nystagmus. The user-friendliness of the book aids understanding of nystagmus, gives useful tips and shines a positive light on living with the condition.

Order your copy of the book today from our online shop, here, for just £8.99

Front cover of the booklet nystagmus and benefits.

Publication update

Thanks go to Mike Hughes, our volunteer benefits adviser and all round expert on everything to do with benefits and nystagmus. Mike has updated his booklet on DLA, PIP and Nystagmus, so if you missed Mike’s workshops at Open Day, make sure you download your free copy of the latest version of his materials.

Download your free copy of the updated materials here.

Open Day 2019 – the highlights

Over 200 people gathered together on Saturday 28 September at the spectacular Principality Stadium, Cardiff for the Nystagmus Network Open Day 2019.

To the strains of Sospan Fach, by Cerys Matthews, Chairman of the Nystagmus Network, Richard Wilson OBE took to the stage to welcome everyone.

Up next, Nystagmus Network Founder and Honorary President, Vivien Jones, introduced lead researchers from Cardiff, Leicester, London, Plymouth, Sheffield and Southampton.

Elsewhere in the stadium, the children were enjoying the first drama workshop of the day, courtesy of UCAN Productions.

Next to take to the stage was Daniel Williams, Founder of Visualise Training and Consultancy and our keynote speaker for the day. Daniel shared his own sight loss story and reinforced the message that, with the right support in place, children and young people with impaired vision can achieve their goals.

There was a strong emphasis on education and, in particular, SEN support for children with nystagmus today in Cardiff.

Next to the stage were Nystagmus Network trustees and volunteer education advocates, Frances Lilley and Claire Brinn.

Following close on their heels was Michael Charles from Sinclairs Law, Cardiff. Mike and his colleague, Kevin, were there to provide information and advice for those families whose children attend schools in Wales, where SEN legislation is slightly different from that which applies to English schools.

Later, parents and carers had the opportunity to attend surgeries, drop ins and Q+A sessions with our legal experts.

Gwyn McCormack is the Founder of Positive Eye, an award winning teacher training provider, working to support children with special educational needs and impaired vision.

Gwyn introduced us to her character, Marvin and showed parents how to support their children’s learning and development using simple, everyday objects and tasks.

Elsewhere, Hannah-Elisabeth Ricketts ran a workshop on nystagmus in the workplace.

At lunch time Dr Gareth Rees from DVLA answered delegates’ questions about nystagmus and driving.

Researchers and clinicians were inundated with visitors to the Research HUB.

Our visitors also enjoyed the exhibition, which included suppliers of assistive technology, VI charities, the colleges and a beautiful selection of paintings by Neill Mison the ‘visually impaired artist’ who was there to chat with families about his art.

Parents were networking and getting down to their most burning questions in our Parents’ Forum with mother and daughter team, Jules and Hannah.

Meanwhile, Sara was busy in the Nystagmus Network charity shop selling T-shirts, mascots, raffle tickets and Christmas cards.

Nadine Neckles, author of this year’s fabulous new book “Can I tell you about Nystagmus?” joined us next. Nadine told us all about her book and her experiences of parenting a young child with nystagmus.

At tea time she signed copies of her book.

You can buy your copy, here.

We heard from our speakers in the afternoon about all the services available across the UK for people living with impaired vision and those supporting someone who has a vision impairment.

Representatives of all of these services were part of our exhibition.

Meanwhile, the children are enjoying a second drama workshop or taking part in a team-building exercise with VI rugby ace, Wil Maudsley. Wil was joined by surprise guest and total rugby fan, Adam Hills.

We may not be celebrating the 25th anniversary of our friendship quite yet, but, to the tune of “I’ll be there for you” by the Rembrandts we welcomed to the lectern two of the Nystagmus Network’s very best friends, Joanne Green, Head of Events and Fundraising at Moorfields Eye Charity and Rubina Ahmed, Head of Research at Fight for Sight.

Jo celebrated the amazing achievements of our abseilers and eye to eye walkers who have together raised very nearly £20,000 towards nystagmus research at Moorfields Eye Hospital and University College, London.

Rubina told delegates about our joint funding, to the tune of £250,000 over the next 3 years, of a brand new post-doctoral research project in nystagmus and other joint investment projects to come.

Young Oliver Mitchell welcomed us back into the Millennium Lounge with his rendition of “Danny Boy” in a respectful nod to our charity patron, Sir James Galway. Well done, Oliver!

And finally, we welcomed to the stage singer/songwriter, Ben Haynes. Ben knows only too well what it’s like growing up with nystagmus and albinism, but it hasn’t stopped him from pursuing a career in music. He generously shared his story and some of his music. You can hear Ben’s latest single, here.

Thank you to everyone who made the Nystagmus Network Open Day 2019 such a success and thank you to each and everyone who said yes to Cardiff.

We’ll be doing it all again next year on Saturday 3 October. The location and venue are still to be decided but you can put the date in your diary NOW!

Jeans for Nystagmus Genes: Delilah’s story

Delilah’s story: Delilah is helping to raise awareness of children’s genetic disorders with the UK children’s charity Genetic Disorders UK and their annual fundraising day, Jeans for Genes Day. This year, Jeans for Genes Day runs from Mon 16 – Fri 20 September and invites everyone to wear their jeans to work or school in return for a donation www.jeansforgenesday.org

When Delilah was four months old, her mother Sarah noticed a tremor in her eyes. The baby went on to be diagnosed with nystagmus, a complex visual impairment causing involuntary eye movements and affecting vision.
Delilah is lively and confident but her parents sometimes worry because her depth perception is limited, which means she may be more likely to trip and fall.
There’s no cure for nystagmus and Delilah’s parents aren’t sure how it will affect her in the future but at the moment nothing stops her – she loves princesses, camping and dancing.

Four-year-old Delilah was diagnosed with nystagmus, a congenital disorder affecting the eyes. As is often the case with children with the condition, she was diagnosed after her mother, Sarah, noticed her eyes appearing to ‘wobble’ – she also has a retinal fold. Delilah’s a happy, confident little girl who loves school, dancing and outdoor activities – but she does have some visual impairment and there’s currently no cure for nystagmus.

All seemed well when Delilah was born. But when she was around four months old, her mum Sarah, 45, who owns a cleaning business, noticed her daughter’s eyes were moving around randomly. ‘I had no comprehension what it was, but when I spoke to family members they said it was just a baby’s development and she was trying to focus,’ says Sarah. ‘But my mother’s intuition told me to check it out. So we went to local children’s centre to see their ophthalmologist a couple of months later and they said she had nystagmus.’

Sarah and her husband, Rob, 48, who is in the police force, had no idea what that meant. ‘We both wear glasses for reading or seeing telly but that’s just age-related and nobody in our family has anything like this.’ From that moment, the couple went on a huge learning curve.

‘It was scary at the start,’ says Sarah. ‘The opthalmologist wasn’t a specialist in nystagmus so all he could advise was not to google and to wait for a proper appointment. But of course we looked it up and found the Nystagmus Network.’ Sarah and Rob felt disheartened they had been left to learn about the condition themselves. ‘The children’s centre just sent out a general blurb, which, scarily, focused on blindness, but we later found out that wasn’t right. At the time, though, that really scared me.’

The family began to get more involved with families affected by nystagmus so they could learn more about the condition. ‘It was so hard to know what was going on – was she taking longer to reach milestones because of nystagmus or was it all just part of her?’ Sarah says.

It was when Delilah was referred to Manchester Eye Hospital that she began to receive more individualised treatment. Doctors there diagnosed retinal fold – an abnormality in the retina caused when a blood vessel is left behind when the eye is developing in pregnancy. By the time of birth these have usually disappeared but sometimes the vessel is left, and in Delilah’s case it’s attached, giving the appearance of a fold, and making her vision in the left eye very limited.

‘The doctors at Manchester helped us see Delilah as her own person with her own condition,’ says Sarah. ‘They carried out lots of tests to check the connections between Delilah’s eyes and brain and that was all fine. They prescribed her glasses, which have helped a lot. And in fact her eyes don’t shake as much as when she was little, although I notice the tremors more when she’s tired or stressed.’

None of it stops Delilah, though. ‘She is a rocket – she does everything at 100mph,’ laughs Sarah. ‘It’s so funny because her older sister, Lola, is a lot more cautious. She’ll be thinking about it and Delilah will have already done it! When she started school we found her depth perception wasn’t brilliant, which means she might not always see steps. On the one hand, it’s great she’s so confident, but we have tried to help her learn to look around first and take care. The school have been great – they’ve painted the lower stair rails bright yellow to give her something to focus on.’

Now Delilah’s reading and colouring in, the family have found it helps her to have a book propped up on a reading slope so she doesn’t have to hunch trying to focus. And she has a visual support worker who goes into Delilah’s school to advise.’

‘We don’t know what the future holds,’ says Sarah. ‘It’s rare for someone with the condition to learn to drive but who knows where we’ll be in the future. She may need bigger fonts when reading and so on, but until she’s doing it we can’t pre-empt it.’

But right now, nothing stops Delilah. ‘She loves dancing, drawing and singing, and is really energetic and outdoorsy,’ says Sarah. ‘She can’t wait to go camping in the summer. And she loves princesses!’

Jeans for Genes Day raises money for Genetic Disorders UK, the charity that aims to change the world for children with genetic disorders. Funds raised will go to the vital care and support they need.

Jeans for Genes Day is from Mon 16 – Fri 20 September and invites everyone to wear their jeans to work or school and make a donation. Sign up for your free fundraising pack at: www.jeansforgenesday.org.

Nystagmus Network is a Jeans for Genes Day 2019 grant charity. Our grant funds an activity day for children aged 5-15 with nystagmus. Children from across the UK will attend a day of creative play, looked after by adult facilitators who understand the condition, how it impacts on both vision and social interaction.

A survey on glaucoma and nystagmus

You can support the University of Cardiff team to develop new diagnostic testing for people with nystagmus by taking their survey today.

“The Research Unit for Nystagmus at Cardiff University is looking for people with nystagmus to take part in a survey that aims to further our understanding on the number of people with nystagmus who have also been diagnosed with glaucoma.

“This survey will help us enhance our knowledge on how clinical tests can be improved to detect additional eye conditions in patients who already have nystagmus. The survey should take 5-6 minutes to complete. All answers are anonymised and will be kept confidential. “

Take part in the survey

Going to uni with nystagmus

Today’s guest post comes from Ella, author of the blog, Life of Ella. Ella is a First Class Honours graduate and a civil servant. She also happens to have nystagmus.

Some people with nystagmus might think that university is not for them, but Ella is here to share her experiences of support and success.

I recently graduated (class of 2018) from Nottingham Trent University with a first-class honours in Health & Social Care. I have a mild form of Cerebral Palsy and I’m visually impaired (I have Nystagmus and Astigmatism).

Before

I went through the same process as everyone else as applying for a place at university – writing my personal statement and submitting my UCAS application, deciding on my potential choices and working for the grades I needed.

When it came to choosing my five choices, (in the end I had four) I had to first decide the furthest away I wanted to look from home, and how easy it was to travel there and back home on my own. Reasons for this being I can’t legally drive so I rely a lot on public transport (mainly trains) to get me from A to B.

My four choices in the end were:

Nottingham Trent (NTU)
De Montfort (DMU)
Bradford
Manchester (I never actually looked round in the end…)

It was actually quite difficult to choose my first and insurance choices – for a long time, my top three choices were all being re-ordered, all for different reasons…the course, location, the campus, even the lecturers at the open day. Eventually, I settled on the list above, and I am so happy I went with NTU as my first choice, but more on that later.

After having my place confirmed at NTU I was then able to apply for my tuition and maintenance loans from Student Finance England (SFE), and apply for the Disabled Students’ Allowance (DSA) alongside … let me tell you, this was not a smooth ride, and I encountered my first major hiccup.

I was told about the DSA when I looked around DMU for the first time, with my parents. We visited the Student Support department to see what support they had to offer, and I briefly explained my situation and my needs. I never knew it existed until that moment, so I looked into applying for it at the earliest opportunity.

Take a look at this post by Chloe which explains the DSA in more detail and type of support you can get from it. I will also try and cover the help I got too.

My DSA process – from start to finish

After filling out the form for both SFE and DSA, they were both accepted. I was invited to arrange a Needs Assesment to determine what support I would need to help with my studies.

The assessment was pretty informal, a long chat so the assessor could find out more about my conditions (using non-medical jargon!) and chatting more about what could help with my studies.

The following recommendations were put into the final report and put forward to help me with my studies:

A scanner and printer – this would allow me to print out all the materials I would need (particularly useful for doing my dissertation and printing out/analysing papers)
Read and Write (text to speech software) – for me, the most useful piece of software and I wish I had known about it earlier. I mainly used this for when I was writing my assignments, as it would read aloud to me as I was typing so I could notice if there were any mistakes, which was extremely useful. There was also a feature for when I was researching for assignments to use different coloured highlighters. Read and Write would then store them all in one place, I could make each colour for particular subjects/ideas, and wouldn’t have to go back to find them each time.
Dragon Naturally Speaking (speech to text software) – This bit of kit is amazing. Think Siri but smarter. You train Dragon to recognise how you speak and get used to your accent (coming from Yorkshire I was sceptical it would understand me…) but it came in handy when doing my work but I was feeling tired or didn’t have the energy to write out thousands of words in a short space of time.
MindView – this is a mind mapping software. It allowed me to create mindmaps on my laptop for assignment outlines. I was able to easily access them, and they were easier to read than paper versions.
Audio recorder and software – mainly used for recording lectures so I could focus on the key points, but have all of it to listen back to if I needed to.

As well as these, I was given an ergonomic chair (to help with my posture and my pain if sat down for long periods – normal office chairs are super uncomfortable. The chair was made-to-measure)footrest, a laptop stand, and an external monitor.

We initially thought the laptop I had at the time would be suitable to run all this new software on – but when the suppliers came to fit it all, they ran into a problem. My laptop wasn’t powerful enough to run some of the software I needed. Luckily, DSA meant that they offered laptops to those who needed them. The catch – they had just updated the rules, meaning everyone now had to pay £200 if you wanted a laptop from them. That aside, I had everything I needed to help me when studying.

I was able to keep everything I was given, so my chair and footrest now live at work.

Next, I was able to apply for my student accommodation. My parents spoke at length with Student Support and Accommodations services at NTU to assess my options. I was always going to stay on campus, as that way I was able to access everything I needed, have my own space and the staff were able to help if I needed it. I Was able to go back and visit the accommodation a few times and I even got to pick my specific room.

Months went by and results day had passed. I kept checking my SFE online account to see that everything was in order. However, my tuition and maintenance loan application still said: “Awaiting confirmation” or something to that effect. Long story short, when I finally got to speak to a senior member of staff, it turns out my DSA application had somehow overwritten my other application. The whole process was a very stressful and inaccessible one, meaning I was considering dropping out of university before I had even got there, but they managed to sort it all out in the end.

During

I was able to move into my halls of residence a few days before others. This gave me a chance to settle in and get used to my surroundings before it was full of my flatmates.

Freshers Week wasn’t the nicest experience. I don’t drink and haven’t really been around many people who have drunk a lot. The nights were very loud and I felt very anxious. I mainly just hibernated in my room watching Netflix or YouTube, trying to drown out the loud music. I know that isn’t what you’re supposed to do but it just wasn’t my thing, but that is what Freshers is geared towards.

Throughout my time at university, I had an Access Statement which detailed my disabilities and what help I needed. This was given to my personal tutor(s) and lectures to help them understand what I needed and be aware of my situation. The statement also allowed me to gain deadline extensions (if I needed them) on assignments.

I was mostly able to access the lecture and seminar PowerPoint slides to read beforehand on my iPad and laptop and during the lecture.

If I was meeting new tutors, I took it upon myself to introduce myself to them and make them aware of my situation, regardless of them seeing my access statement. Most were extremely helpful and made my experience more positive.

My DSA allowed me to also have a non-medical support mentor. She would help me with planning my assignments and helping me with accessing materials and the best way to organise my work and proofreading. I found this extremely useful and would definitely recommend it.

During my three years at NTU, I stayed in halls of residence. This was for my own safety and ease of access. Student houses are often old and inaccessible, so that wasn’t an option for me. My friend and I decided we would stay in halls of residence together, we were able to stay in the same flat and still be on campus. I enjoyed living on campus throughout my time at university.

After

So…you might be wondering, what am I doing now?

I have a job working as an Administrative Assistant for a Civil Service department in Leeds. I have been in employment since November 2018. At the moment I am working part-time, as I was unsure of how I would cope with full-time work.

Reed in Partnership: Better Working Futures programme helped me in gaining employment. They not only helped me find a job but helped me massively with interview techniques and gaining confidence.

I really hope this post has been useful. If you are at university or in employment with a disability, what advice would you give to others?

Ella x

You can follow Ella’s blog, Life of Ella, here.

Manchester meet up

The next meeting of our new North West nystagmus network will take place on Saturday 7 September in central Manchester, 10am to 12 noon.

Nystagmus Network trustee, Marie Turnbull will once again be your host .

We look forward to welcoming back the families and adults who came along last time and to seeing some new faces, too.

New members are very welcome. For details, please contact us today.

Nystagmus and driving by Sophie

Please download our guide to Nystagmus and Driving here

This guest post is from blogger, Sophie who shares her experience of living, laughing and loving with nystagmus in her blog ‘Nystagmus in a Nut Shell’.

Nystagmus and Driving – what’s the real deal?

Well, I’ve had experience in this matter, so let me share it with you…

Can people with Nystagmus drive? Without a doubt, that’s one of the most common questions for parents of or any person with nystagmus to have…

In my previous blog post “5 things to NEVER say to someone with Nystagmus” I mentioned that a lot of people with the condition can’t drive, which is true. HOWEVER, and this is a BIG however, it all depends on each individual case.

If any of you attended the Nystagmus Network’s open day in Birmingham a few years ago, you may have witnessed my appalling presentation where I rambled on aimlessly about my life, including being able to drive. Well, for starters, my nerves were level 500000, and when I’m nervous I babble on with no filter. Please let me set the story straight and explain from the beginning:

Here’s my experience of driving with nystagmus

(Sorry – it’s a long one!)

I’ve always had it drummed into me from a young age that I’d never be able to drive, and I didn’t really have a choice but to accept that. When I went to uni (three weeks after my 18th birthday) the only form of ID I owned was my passport and of course, giving the infamous university culture, I was ‘out out’ every night. After a while I was growing tired of all the near-misses of losing my most valuable form of documentation.

It must have been during my first semester of my second year when I went for a check-up at Moorfields Eye Hospital, when the optician asked me if I was driving yet. Of course, my immediate reaction was to give her the dirtiest of looks because surely, she of all people should know that people with Nystagmus can’t drive. However, she assured me this wasn’t the case and that I meet all the driving requirements.

Absolutely flabbergasted, I went online and applied for my provisional driver’s license as soon as I got home. My little brother had applied for his a few weeks before me and he received it in the post after ten or so days, so I thought that it’d be the same experience for me – WRONG.

When filling in the online form, you must declare whether you have any medical conditions etc. Not going to lie, I was tempted to put no, because Moorfields had said I was okay to drive, and they’re the best eye hospital in the world so they know their stuff, right? Luckily my mum (who was also shocked that I’d been given the all clear) said that I needed to declare it for insurance purposes; like if I had an accident I may not be able to claim make a claim if I hadn’t declared my eyesight problem and it came out that I have Nystagmus.

A few week or so later, the DVLA got in contact with me saying that they need more information about my eyesight before they could process my application further, which is fair enough. I can’t recall exactly what I said to them (we’re talking over five years ago now – I’m getting old), but they eventually got back to me and said they had rejected my application. Of course, me being the stubborn lass that I am, wouldn’t take no for an answer, so I asked Moorfields to compile a letter for me explaining exactly what they told me.

Fast forward to what must have been two month or so later and I final got another letter from the DVLA, saying that they were going to have to conduct some tests on me to confirm that it was okay for me to sit behind the wheel. For the first test, I had to go to my local Specsavers to have a sight and peripheral vision test. The sight test was pretty much basic – reading numbers descending in size off a chart (something I’ve had to do at least once a year since I was too young to remember). The peripheral one on the other-hand, I’d never had done before; it consisted of positioning my head in this white fish bowl-type container, keeping my head still, staring straight ahead and clicking every time I saw a a light pop up. The guy who was monitoring my responses gave me about five or six attempts to pass the test because he was fascinated by my eyes and how there was no reoccurring pattern to which ones I’d miss because of my eye movement. Normally, he said, people would either miss the lights appearing to the right or left, or up above, but there was no correlation with me. I think I finally managed to pass on the sixth attempt, however when the guy did say that he would never want to be in a car with me. The cheek.

A few months later I received another letter from the DVLA saying that the final stage was to go and do the classic number plate reading test. Leading up to it, my mum and I were measuring out the distance (around 67 feet) and getting me to practice reading the plates, which I was just about doing. So when the day came for my official number plate test, I felt semi confident. My boyfriend, who had just passed his test at the time, took me to my local test centre where, this is no word of a lie, I spent 45 minutes trying to make out the letters/numbers on the designated plate. FORTY FIVE MINUTES. But I still passed, and I received my provisional license. The whole process probably took over a year.

I honestly thought that getting my provisional would be the hardest part of the driving experience for me – how wrong was I? First, I had lessons in a manual car, and to be honest, I wasn’t progressing as fast as I should have been. 20 lessons and around £600 in, I couldn’t even drive on the main road, we were just driving around my estate or a car park. I was still misjudging the distance between the vehicle and the curb as well as constantly stalling and turning either too early or too late. My instructor suggested that perhaps learning in a manual was giving me too much to focus on, so maybe I was better taking lessons in an automatic.

I had a break for about a year, in the meantime I switched so taking a break from the stress of driving did me the world of good. I then found an automatic instructor around the corner from work, so he collected me at 17:30 every Tuesday. The first time I drove an automatic, I found it so much easier than a manual (as everyone does). It enabled me to focus more on the other aspects of driving, such as if I was going to hit anyone or mount the curb, rather than spending the entire time worrying if I still had the ‘bite’. (some manual term). Without a doubt, I progressed further than I had previously and even drove home from work multiple times (the instructor did have to take over at the roundabouts because I kept freaking out).

I used to date someone who lived a ten-minute drive from the office, so rather than driving back to my village which took around half an hour, we used to go to the industrial estate near his to drive around. I remember once, I thought I was doing well with my turning and my instructor made me pull over. I pulled the car to the side of the curb (with his help because I either got too far up the curb or not close enough), and he asked me how many parked cars I thought I nearly hit. Even though I said none, the correct answer was every single parked car I less than 1 mm away from hitting.

Him saying that was a massive realisation for me – what if those cars had been people? What if those cars were moving and had people in them? I started crying and we called it a day for that lesson.

I resumed the next week, feeling more optimistic, but by the end of the lesson I was in tears again. This happened for at least three more weeks, then my instructor said to me that he personally didn’t feel that I should continue driving, but it was up to me. It was then that I decided he was right and that actually I should have pre-empted this considering how long it took me to pass the DVLA’s tests. The amount of time and money I had spent on lessons, someone could have passed their test at least two times and there I was having a breakdown at a roundabout. In hindsight, it took me that split second longer to focus, but that split second can be the difference between life and death on the road, not just for me but for others too.

I’m not going to lie to you, it was really hard for me to come to terms with the fact that I can’t drive and never will be able to, especially as I went from thinking I couldn’t to being told I’d be able to by Moorfields, which really got my hopes up. It was very bittersweet when my friends, little brother, cousins and stepsister passed their tests. Don’t get me wrong, I’m very happy for them, but it’s a constant reminder that I can’t drive through no fault of my own.

But, does that matter? No, it really doesn’t! I live a 20 min walk from a train station with a direct line into London, a 30 min walk from the local shops, so I’m having to exercise to get a pint of milk rather than jumping in my car, but so what? I’m keeping fit! In fact, 48% of adults in the UK don’t drive!

There are so many benefits of not being able to drive:

Keeping fitness levels up
Helping to save the environment – think about it, your carbon footprint will be smaller because you’re not producing as many emissions
Saving money – no lesson or test fees, insurance, finance, or petrol costs. Paying for public transport is far less in the long-term
You never have to be the designated driver on a night out – for me, this is the most important one!!!!

However, just because this is my experience doesn’t mean that all people with Nystagmus can’t drive. Someone else I know with the same eyesight problem has been driving for years, which continues my point from previous blog posts; Nystagmus effects people in different ways. What may be true for me may not necessarily be the case for you.

What would my advice be for driving with Nystagmus? Give it a shot if you get the option – you don’t know until you try. But if you’ve already been told by your optician that driving isn’t on the table, then it really isn’t a big deal. So many people have said to me “how do you cope not driving?” and to be honest I just look at them and laugh. It’s actually funny how people are so dependent on driving and couldn’t imagine life without their car – how sad is that? If you replaced a car with another materialistic object such as Ray Ban sunglasses, they’re saying how they can’t live without their Ray Bans. Yeah, how silly does that sound. At the end of the day, no car? So what? There are other ways of transportation. If you can drive, then brilliant! Some people can, some people can’t, it’s no big deal and people will think no less of you no matter what. If they do, are they worth having in your life?

So, I’ve shared my experience of driving with Nystagmus with you – what’s yours?

Bye for now,

Sophie xx

For information on nystagmus, driving and the DVLA requirements, please see our free to download booklet ‘Nystagmus and Driving’.