A woman and child embrace.

Notes from the February Parents’ Forum

Thank you to everyone who joined us for the Nystagmus Network February Parents’ Forum.

Homeschooling

Although it was Half Term for some, homeschooling was mentioned quite a bit. We talked about requesting modified print versions of online work to reduce the amount of screen time children are exposed to during this time.

We loved the suggestion from one parent about using face time for parallel lego play with a friend or story time with grandparents instead of using it for online games.

We also had a quick insight, thanks to one of our members, into full time, permanent home education, as opposed to homeschooling in a pandemic.

ECLOs

Ian, our Information Support Officer made sure that everyone knew what an ECLO (Eye Clinic Liaison Officer) is, how they can help support the whole family and where to find them. Please contact Ian at [email protected] if you need help finding your ECLO.

ADHD and Dyslexia

There was some discussion about ADHD and nystagmus and whether there may be a link. There is no known link, and the likelihood of a child with nystagmus having ADHD is no greater than for any other child. Children with nystagmus are sometimes mistakenly thought to have ADHD because of some of the characteristics typical of nystagmus (inability or unwillingness to maintain eye contact, or a child unable to access their work, for example). If in doubt, a proper test should be commissioned.

Similarly with dyslexia. Children with nystagmus can struggle to read at first because of the phenomenon known as visual crowding (the inability to pick out individual letters or words from a page) and difficulty in scanning from line to line. Both of these are caused by the eye movements. They can be overcome using a card, ruler or Typoscope to keep focus on a single word or line of text at a time.

There was a question about photosensitivity and nystagmus. There is a definite connection in many cases. The advice is to protect the eyes as much as possible from bright lights, glare and reflected light, using curtains, shades and blinds and wearing peaked caps, wide brimmed hats or sunglasses indoors and out – and also especially in the car – as a precaution.

The Nystagmus Care Pathway

Thank you for your helpful contributions to the work we are putting together towards the Nystagmus Care Pathway. These have been passed to Jay Self and the NUKE (Nystagmus UK Eye research group). We hope that the guidelines will be endorsed and published, through the Nystagmus Network website and elsewhere, very soon.

Gmail group

Parents were offered the chance to join a Gmail group for parents of children and young people with nystagmus so they can keep in touch with each other more easily by email between zoom calls. The charity will also contact parents via this group to invite you to future meet ups and keep them posted on nystagmus news and updates.

Facebook

Please do join the Nystagmus Network Facebook group for parents. It’s there for you to help you connect with others.

Adults chat together

Notes from the January forum for adults living with CN

It was so wonderful to see and hear people exchanging experiences and tips on Tuesday evening, 26 January (morning for those who joined us from New Zealand!). 

Here are just a few notes from our discussions.

Jigsaws online

There are lots of websites offering jigsaws to do onscreen. I tried TheJigsawPuzzles.com.You can change the background and make the image bigger, but obviously you are better placed than I am to road test whether it is fully accessible for you.

Colour by numbers online

One of our members recommended Happy Colour. You can find this on the Apple app store or on Google Play.

Audio description for TV

There’s an article on the RNIB website about getting audio description on TV.

Tinted glasses – yellow, brown or grey?

Following a little internet research on coloured lenses for glasses, it seems that yellow tinted glasses, whilst reducing glare, can actually reduce visual acuity and 3D vision, so probably not ideal for people with nystagmus. They seem to be promoted to aid night driving! The difference between grey and brown lens tints seems to be that there is less colour distortion with grey. It’s definitely best to seek professional advice from an optician.

Blue light glasses

Lenses to counter blue light from screens are widely available. I found this article by Specsavers. It includes this quote from The College of Optometrists: ‘The best scientific evidence currently available does not support the use of blue-blocking spectacle lenses in the general population to improve visual performance, alleviate the symptoms of eye fatigue or visual discomfort, improve sleep quality or conserve macula health.’

Visual Crowding

You can read a recent blog post here from the Nystagmus Network about Vijay Taylor’s recent research into the nystagmus related phenomenon of visual crowding (the challenge of picking out a single object or face). The post contains a link to the online publication of Vijay’s PhD paper.

Enlarging your cursor

There’s an article on Ability Net taking you through steps to enlarge your mouse on Windows 10. Apple have a similar item on their website on enlarging the cursor on a MAC.

Navigation

The apps mentioned to help with finding your way around on foot are Soundscape and Where’s the Path. Find them in the app store.

Looking after yourself

There are some excellent tips on staying safe and protecting your mental health and wellbeing on the Retina UK website.

Keeping Active

Whilst we remain locked down and the weather is cold, there are some great tips for indoor exercises and activities on the NHS website.

Staying connected – our Group Gmail

The Nystagmus Network offers forum members the chance to join a Gmail group for people with CN so they can keep in touch with each other more easily by email between zoom calls.

Facebook Group

Finally, please do join the Nystagmus Network Facebook group for adults living with CN. It’s there for you to help you connect with others.

If you would like to receive an invitation to the next forum, please contact us.

adults chatting at a conference

Notes from the January AN/Oscillopsia Forum

With people joining us from both sides of the Atlantic, there was some very interesting discussion at the most recent Nystagmus Network forum for adults with Acquired Nystagmus and Oscillopsia.

Symptoms

It is always reassuring, particularly for new members of the group, to hear the wide range of symptoms others are experiencing. These range far beyond the eye sight (challenges reading small, and even larger print, on screen or on the page, compromised peripheral and 3D vision) but also include fatigue, dizziness, discomfort and difficulty sleeping, and generally feeling we are not ourselves. If you haven’t found it already, please see our general information booklet on AN and our guide, written by people who have nystagmus, Nystagmus is ….

Treatments – drugs

The most commonly used drugs, at least in the UK, are gabapentin, memantin and baclofen. These are all of the muscle relaxant type and available on the NHS. They work well for some people, whilst others experience varying side effects which can be similar to or even worse than the effects of AN itself, such as nausea, tiredness and, in some cases, depression.

Two of our group members are currently being prescribed Fampyra or Fampiridine which is part of a trial under the NHS. We are grateful to them for so generously sharing their experiences with us. This drug has been shown in the US to improve symptoms of downbeat nystagmus and was originally used to address difficulties with walking in ataxia and MS patients. You can read more about Fampiridine on the MS Trust website here.

Therapies

Several members reported on therapies they had heard about, had been suggested or that they had tried, including cranial osteopathy, atlas orthogonal chiropractic and kore therapy. Please speak to your doctor before embarking on any therapy or exercise routine, even neck stretches or yoga. You can read the experiences of Claire Entwistle, who has congenital nystagmus and describes all the various ‘alternative’ therapies she has tried in her book “What seems to be the trouble?”

Pillows

Various people have tried a range of neck pillows, supports and braces to ease discomfort when sitting or sleeping. These will of course be very personal to the individual and you could end up buying something that isn’t suitable or doesn’t help. Turning an ordinary pillow on its side and giving it a firm karate chop through the middle before you lie your head in the dip, can help keep your neck flat and your head supported on both sides.

The Nystagmus Care Pathway

The charity is working alongside nystagmus clinicians and researchers to develop a Nystagmus Care Pathway whereby anyone diagnosed with the condition, wherever they are in the country, will receive the most appropriate diagnostic experience, treatment and signposting to further support and information. You can read a summary in a Nystagmus Network blog post.The post contains a link to the full article in the British and Irish Orthoptic Journal. Work continues to get the pathway adopted as good practice by the Royal College of Ophthalmology.

Group Gmail

We’d like to offer you the chance to join a Gmail group for people with AN and Oscillopsia so you can keep in touch with each other more easily by email between zoom calls. The charity will also contact you via this group to invite you to future meet ups and keep you posted on nystagmus news and updates. If you would like to join this group, please contact us.

Facebook Group

Please do join the Nystagmus Network Facebook group for people living with AN and oscillopsia. It’s there for you to help you connect with others.

We will be hosting another online get together soon. Please contact us for details.

children point to a computer screen

Notes from the January Parent Forum

The Nystagmus Network runs regular virtual get togethers for parents and carers on Zoom. Here’s Sue’s report on the January event, which focused on homeschooling.

It was lovely to see Mums and Dads on the Nystagmus Network Parents’ Forum this month. You’re all doing a great job on the homeschooling front, but I think it’s fair to say we’re all looking forward to some warmer weather, when we can get the children back outside, and to schools reopening, too. 

We covered topics including resources, creative activities, down time, eye health and screen use and EHC plans. Here are just a few follow up notes which I hope will be useful. 

Homeschool  BBC Bitesize – learning resources for all Key Stages and those downloadable timetables  

Homeschooling and nystagmus: read Nadine’s blog post

Eye health and screen time Association of Optometrists’ advice on screen time and eye health

Specsavers’ information on children’s eye health and screen time 

The 20-20-20 rule explained by Fight for Sight in this BBC article

SEN support at school IPSEA online courses for parents are really helpful with the EHCP process or if you need to prepare an appeal. The next EHCP masterclass for parents is on 9 February and there are lots more online learning opportunities.

The Nystagmus Network offers an education advocacy service for parents who are members of the charity. This is one to one bespoke support provided by our IPSEA trained volunteers, Frances and Claire. Membership subscription is £25 per year. Please let me know if you’d like to be referred to our education advocates.

General information for parents You can download a whole range of information for parents and carers from our website.

Please keep an eye on our Facebook page for all our latest news and information and, if you haven’t already, please join our Facebook group for parents.

And finally … please remember  we’re only an email or a phone call away.
I look forward to seeing you at the next parent forum.

If you’d like to join the next Nystagmus Parents’ Forum, please contact us here.

Adults chat together

Nystagmus Networking

With a most difficult year now thankfully behind us, the Nystagmus Network is here to support the nystagmus community in any way we can.

Keeping you connected

Virtual meet ups for people living with nystagmus, or supporting someone who does, resume this month.

For parents

There will be a virtual parents’ forum at 8pm on Tuesday 12 January. Share experiences, make new friends. This session will focus on homeschooling and keeping little ones happy, engaged and learning at home. This session will be a zoom chat. Everyone welcome.

Please contact us to join. 

For adults with congenital nystagmus

There will be a virtual Congenital Nystagmus Forum for adults at 7pm on Tuesday 26 January. Share experiences, make new friends. This session will focus on treatments available around the world. This session will be a zoom chat. Everyone welcome.

Please contact us to join. 

For adults with acquired nystagmus

There will be a virtual Acquired Nystagmus Forum at 5pm on Monday 18 January. Share experiences, make new friends. This session will focus on virtual hospital appointments and progress with our AN data bank. This session will be a zoom chat. Everyone welcome.

Please contact us to join. 

A screenshot of the Nystagmus Network UK research workshop on zoom, showing thumbnail images of 20 delegates.

Nystagmus Network hosts UK research workshop

On Friday 2 October, the Nystagmus Network once again hosted the annual UK nystagmus research workshop.

This is an opportunity for researchers, clinicians and academics to get together to share their work and plan greater collaboration. They are, after all, all working towards the same goal. The workshop took place via zoom.

Nystagmus Network trustees and staff were delighted to be joined by nystagmus experts from

  • The School of Optometry and Vision Sciences, Cardiff University
  • The Ulverscroft Eye Unit, University of Leicester
  • Moorfields Eye Hospital, London
  • Royal Eye Infirmary, Plymouth
  • Academic Unit of Ophthalmology and Orthoptics, University of Sheffield
  • University of Southampton and Southampton General Hospital

A postcard to advertise virtual Open Day on 3 October, showing a selection of images of the highlights to come.

Nystagmus doesn’t stop me …

The theme of the Nystagmus Network virtual Open Day 2020 is the phrase ‘Nothing will stop us!”

That’s because we believe that nystagmus needn’t stop you from doing (almost) anything you want to do.

So this month we’re running our Open Day 2020 COMPETITION!

To enter, all you have to do is show us what nystagmus doesn’t stop you from doing. Your competition entry can take any form you like. It can be

a poem

a short story

a photograph

a drawing

a voice recording

a video clip

Send your entry with your name, age (if under 16) and the message “Nystagmus doesn’t stop me …” to [email protected] by no later than Saturday 31 October. The best entries will feature on our website and on our social media.

a screen sot of the presentation by Jayshree and Sarah.

Visiting a High Street Optometrist

What happens when you’re discharged from the hospital eye clinic and need to visit an optician’s on the High Street?

Can staff on the High Street really support you with your sight if you have nystagmus? Can they prescribe the right glasses or contact lenses for you?

In their presentation for the Nystagmus Network virtual Open Day 2020, Optometrist, Sarah Arnold and Dispensing Optician, Jayshree Vasani answer these and many more of your questions about the services available at your local optician’s.

Register here to view all Open Day presentations

A cartoon image of a man made of marshmallow

Sometimes we all need more marshmallows

In her presentation for the Nystagmus Network virtual Open Day 2020, Alison Blackman QTVI will talk about resilience and how to boost it.

Resilience is the ability to overcome adversity, reduce stress and bounce back from setbacks. In her presentation, Alison explains how to boost resilience in young people with nystagmus.

She talks about the need we all feel from time to time to have an extra layer of padding around us to keep us feeling confident and protected.

Find out how you can help a young person with nystagmus feel more like marshmallow man.

Register to see all Open Day presentations here

A postcard to advertise virtual Open Day on 3 October, showing a selection of images of the highlights to come.

Booking now for Open Day 2020

The Nystagmus Network has a huge variety of presentations lined up for you at virtual Open Day 2020 on Saturday 3 October.

Enjoy inspirational presentations, research updates and find all the support and information you need, all from the comfort of wherever you are.

Everyone welcome!

Due to social distancing rules still in place, we have decided to go digital! This means that you can attend Open Day 2020 from absolutely anywhere, hear all the latest nystagmus news, get inspired and soak up all the support and information you need, in comfort and safety, wherever you are.

We can promise a stellar list of speakers and presenters, and some fun activities, too, brought to you on screen.

Book your ticket here

Presentations include:

For everyone

  • keynote speaker Joanne Roughton-Arnold, opera singer, founder of FormidAbility, soprano voice of Rising Phoenix and Nystagmus Network member
  • research updates by key nystagmus researchers from across the UK (The School of Optometry and Vision Sciences, Cardiff University; The Ulverscroft Eye Unit, University of Leicester; Moorfields Eye Hospital, London; Royal Eye Infirmary, Plymouth; Academic Unit of Ophthalmology and Orthoptics, University of Sheffield; University of Southampton and Southampton General Hospital
  • Special Education Needs support for children with nystagmus: an update on the legal position in schools in England and in Wales
  • an interview and readings with Claire Entwistle, author of ‘What seems to be the trouble?’
  • building resilience in young people with visual impairment, a session with a QTVI
  • getting the best from an appointment with a high street optician – an optician and a dispensing optometrist explain
  • DLA, PIP and nystagmus, guidance from the Nystagmus Network volunteer benefits adviser
  • student finances and support services for young people with nystagmus heading to university
  • exhibition of assistive technology

For parents

There will be a virtual parents’ forum. 

For adults

There will be a virtual adults’ forum for people living with acquired or congenital nystagmus. 

For children and young people

We’re planning some fun activities which will help our younger delegates make new ‘virtual’ friends as well as an exciting new account on Instagram.

Your virtual Open Day online quiz

Round off your day by taking part in the online quiz. Sign up to take part here.

Exclusively for members of the Nystagmus Network

The following elements of Open Day are open to members of the charity only. If you would like to enjoy full member benefits and privileges, please join us today. Annual subscription is £25.

Phone appointments

Members of the Nystagmus Network will have the opportunity to book timed telephone appointments with a benefits adviser or an education advocate throughout the day. Places will be limited. 

The annual general meeting

Members will also be invited to the charity’s AGM.

Night in with the Nystagmus Network

The day will close with A Night in with the Nystagmus Network, a virtual supper party for members and invited VIP guests. Members registering for this event will receive a set menu to cook at home, purchase as a ready meal or order in, a Nystagmus Network cocktail recipe (alcohol free version included), entry to the Nystagmus Network virtual treasure hunt and a zoom link with joining instructions. Diners will be entertained by our guest speaker, nystagmus hero, Mike Larcombe, who joins us all the way from Australia, following the successful completion of his Walk for Wiggly Eyes. You can watch the highlights of the walk here.

Booking opened for members on 20 August 2020 

Meanwhile …

Watch the highlights of OPEN DAY 2019 here.

Book here for Open Day 2020