nystagmus – Page 18 – Nystagmus Network

Introducing Ian

Ian Springett joined the Nystagmus Network staff team in January 2021.

Following a career in public service, most recently as an ECLO (Eye Care Liaison Officer) and Complaints Officer with the NHS and before that serving as a Police Officer for 30 years, Ian has settled quickly into his new role with the charity as an Information Support Officer.

Ian’s first 3 months with the charity are funded by a grant from Pears Foundation and is part of Government’s £750m charities package, granted through Pears Foundation’s trusted, long-term Partners to ensure funding gets to frontline organisations and their communities.

The Nystagmus Network is grateful to Pears Foundation for their philanthropic support.

We’re back!

Nystagmus Network woolly nystagmus mascots are now back in stock in our online shop.

Dressed in warm woolly hats and scarves, each mascot has its own individual skin and hair colour, nystagmus and a null point.

Thank you to our wonderful volunteer knitter, Lynda.

Order your nystagmus mascot here

Or, if you prefer, you can order a nystagmus onesie mascot.

4 woolly knitted nystagmus mascots, wearing brightly coloured onesies and hats with tassels. — Nystagmus onesie mascots

Congratulations, Dr Thomas

The Nystagmus Network is sending huge congratulations to the newly qualified Dr Nikita Thomas. Dr Thomas achieved her PhD this month.

Nikita is well known to members of the Nystagmus Network for her engaging personality and confident presentations on her latest nystagmus research.

On World Sight Day 2020, Nikita was named an Eye Health Hero by the IAPB (the International Agency for the Prevention of Blindness). She was nominated by the Nystagmus Network and her senior colleagues at the School of Optometry and Vision Sciences, Cardiff University for her innovative work in perimetry.

We’re sure that Nikita has a brilliant nystagmus research career ahead of her. With her PhD behind her she can now concentrate on her post-doctoral career.

Nikita says: “I never thought this day would actually come! I passed my PhD viva and I’m officially Dr Thomas. I was just an average kid at school who raised eyebrows when she chose science at A-levels, and now I’m a fully-fledged scientist. Amazing feeling.”

Congratulations, Dr Thomas!

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.

Vision impairment and employment – a research project

Guest Post: Dr. Liz Ellis, VICTAR, University of Birmingham

The Vision Impairment Centre for Teaching and Research (VICTAR) at the University of Birmingham is conducting research to understand more about the factors which contribute to employment outcomes (the good and not so good) for individuals with a visual impairment, living and/or working in Greater London. This project is being funded by the Vision Foundation and will help to ensure their work is evidence-based and impactful.

We would like to talk with people with vision impairment who are working at the moment, those who are not working, those working in their dream job, those who are looking for a career move, those in part-time jobs, as well as those working full-time – we want to hear about a range of different experiences via an online focus group.

We would also like to talk, via an online focus group, with professionals who have experience of supporting individuals with vision impairment into employment.

Anyone who is aged 18 years or over, in Greater London and interested and able to help should click the link for more information and the option to register to participate. All participants will receive a £20 shopping voucher as a token of appreciation for their time.

For more information please contact Dr. Liz Ellis by email at [email protected]

Sam’s challenge of a lifetime

Nystagmus Network Trustee, Sam Jones will be cycling 500 miles around the North Coast of Scotland in June this year to raise money for the Nystagmus Network.

It’s the ultimate road trip and the challenge of a lifetime.

What people may not realise is that Sam has nystagmus himself and is acually the reason the Nystagmus Network charity was formed.

Find out more about Sam and his trip in this video

Sponsor Sam’s North Coast 500 ride here

Nystagmus does cause visual crowding – it’s official

It’s long been understood that people with nystagmus can struggle to pick out objects from an image or face in a crowd. That’s a phenomenon called visual crowding. But how does nystagmus cause this?

Now Vijay, Taylor, nystagmus researcher at London’s Moorfields Eye Hospital and University College London has shown that the eye movements associated with nystagmus are responsible.

Eye movements elevate crowding in congenital idiopathic nystagmus

Mr Taylor has been undertaking a PhD in visual crowding and idiopathic nystagmus and this month his findings were preliminarily published. He says: “I hope through my findings and investigation of nystagmus eye movements we can develop tools to improve access to education and daily tasks.”

For Vijay having his work published is ‘super exciting’.

The Nystagmus Network helped recruit research participants for the study. Thank you to everyone who took part and well done, Vijay! We’re super excited, too!

Read the publication online here

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.

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.

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.