Notes from the Acquired Nystagmus and Oscillopsia Forum – October
Thank you for joining us for the Nystagmus Network Acquired Nystagmus and Oscillopsia Forum this month. It was lovely to catch up as always.
Quality of Life
We chatted about the wider effects of nystagmus, beyond purely the impact on the sight, with people reporting spinning, disorientation, fairly high stress levels and feelings of disorientation. It seems that most people with AN experience these sensations at some times.
Visual acuity versus functional vision
We discussed the difference between your sight as measured in the optometrist's chair and your vision when out and about, which lead to wondering whether sight was deteriorating. The visual acuity appears to remain the same whilst the oscillopsia or frequency of double vision sometimes feels to be more marked.
Nystagmus and driving
There was quite a bit of talk around issues with driving, particularly at night. Please see the Nystagmus Network's guide to nystagmus and driving which you can download here: https://nystagmusnetwork.myshopify.com/collections/documents/products/nystagmus-and-driving-booklet
We talked about different kinds of glasses and whether or not they were helpful, particularly in blocking out glare. For example, night vision glasses, cocoon glasses, anti-glare or 'blue light' glasses may be more restful for the eyes. It is not advisable to wear any of these whilst driving, however, if colour definition or peripheral vision are compromised.
Sue reported on partially occluded spectacle lenses that had been trialled to prevent sensory overload in people with reduced vision due to brain injury.
The pre-recorded presentations from virtual Open Day 2021, including Maria Theodorou's analysis of diagnosis of and treatments for AN can still be viewed online. If you don't have the digital programme and would like a copy, please email us at firstname.lastname@example.org
Please visit our Facebook page if you can to see all our latest news and stories. For example, this week we have shared the new video simulation of nystagmus and other eye conditions affecting children. The video was made by the Thomas Pocklington Trust and members of our congenital nystagmus forum served as a focus group in the design of the nystagmus section. It would be interesting to see how this compares with acquired nystagmus. The Nystagmus Network Facebook page is here: https://www.facebook.com/NystagmusNetwork
You can join our Facebook group for people living with AN and Oscillopsia here: https://www.facebook.com/groups/acquirednystagmusandoscillopsia
I look forward to seeing you again at our next meeting at 5pm on Wednesday 24 November. We will send you the Zoom link shortly before the meeting date.
Till then, take care.
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