Copy

Notes from the Adults Living with Congenital Nystagmus Forum – October
Thank you to everyone who joined us for the Nystagmus Network September forum for adults living with congenital nystagmus. It was lovely to be able to welcome a couple of new faces, too.

The TPT video
The big news is that the long awaited Thomas Pocklington Trust video, What do we see? 2, has now been launched. The film shows simulations of 5 common forms of visual impairment in children and young people, one of which is, of course, nystagmus. Thank you to the members of this forum who gave their feedback on the first version of the film and helped guide the production of the final version. You can view the video on our Facebook page:    https://www.facebook.com/NystagmusNetwork

While you're there and if you haven't already, why not join our Facebook group for adults living with congenital nystagmus. You can find it here:    https://www.facebook.com/groups/nystagmusnetworkadultsgroup
 
Contact lenses

We had quite a discussion about the relative merits and our personal preferences for glasses, soft or gas permeable contact lenses. One word of caution is that Lasik eye surgery is not normally recommended for nystagmus where it is not regulated by the NHS.

Touch typing
Several members of the group had acquired touch typing skills either as a child at school or later on and agreed that they were very useful and saved a lot of eye strain from constantly changing focus. There are several online courses, including Mavis Beacon.

Driving and nystagmus
We touched on this topic which seems to be never far from people's minds. Don't forget you can download a copy of the Nystagmus Network's guide to nystagmus and driving here: https://nystagmusnetwork.myshopify.com/collections/documents/products/nystagmus-and-driving-booklet

Nystagmus makes you tired!
It was reassuring for everyone to agree that nystagmus causes fatigue, especially when you realise that it's the extra energy and effort needed to focus all day that adds to the sensation. It really makes sense when you think about it.

Open Day 

Thank you to those of you who came along to virtual Open Day on Saturday 25 September. If you didn't manage to join us for the live sessions on the day you can still enjoy the pre-recorded presentations using the links in your digital programme. If you don't have a programme and would like one, please email us at info@nystagmusnet.org.

Richard Osman
For anyone new to Richard, he is a TV producer, presenter and now top selling author and the best known person in the UK who has nystagmus. He features in our video, Nystagmus, the way we see it, alongside Harriet and Will. Richard is a big supporter of the charity and kindly agreed to read our charity appeal on BBC Radio 4 in 2020.

If you'd like to read Richard's books, which are crime mysteries set in a retirement community, they are available on Audible or in print on Amazon Smile (please nominate the Nystagmus Network to receive the free donation) here:   https://smile.amazon.co.uk/s?k=richard+osman&ref=nb_sb_noss_1

I look forward to seeing you for our next get together on Thursday 25 November at 7pm. We will send you the Zoom link shortly before the meeting date.


Till then, best wishes
Sue

You are receiving this email update from the Nystagmus Network because of your interest in the Congenital Nystagmus Forum.

Should you prefer not to hear from us, you can unsubscribe below.
 
Facebook
Twitter
Link
Website
Copyright © 2021 Nystagmus Network, All rights reserved.


Our mailing address is:
info@nystagmusnet.org

Want to change how you receive these emails?
You can update your preferences or unsubscribe from this list.