People living with nystagmus often experience dizziness and problems with balance. In his radio programme ‘The Uncommon Senses’, Barry Smith explores the senses involved in balance and why our vision is so important.
A journey into the human multi-sensory experience, with philosopher Barry Smith and sound artist Nick Ryan. In this episode, we look at the intricacies involved in standing up. For thousands of years people thought we had 5 senses, now it’s believed we have up to 33. In this new series, philosopher Barry Smith and sound artist Nick Ryan take us into the extraordinary world of sensory perception. Barry Smith explores how ballet dancers can whirl around like spinning tops, and why the classic ‘drunk driver’ test works. And we examine the strange workings of the 3 senses involved in the simple task of getting to our feet: vision, vestibular, and proprioception, and ask what happens when they go wrong.
Ifigeneia Manitsa is a Psychology Researcher and Assistant Lecturer at Kingston University. She is currently conducting the last two studies of her PhD which is focused on the academic and social inclusion of adolescents with and without visual impairments!
If a student wants to participate in both studies, they will be asked to complete three questionnaires focused on their relationships with their teachers and peers and on their school engagement (students with visual impairments will need approximately 30 minutes for this). In addition, their favourite teachers/teaching assistants will be asked to complete a short online questionnaire about these students’ academic inclusion and their parents will be asked to complete a short online questionnaire too.
Ifigeneia is also very interested in recruiting some more teachers who will share with her their perceptions towards the inclusion of students with visual impairments. She is more than happy to send you the information sheets and consent forms if you want to have a look! If there are any families/students who wish to take part in only one of these studies, she is more than happy to include them only in one study.
Ifigeneia is happy to “meet” students and their families via Skype/Zoom.
She would also like to mention that the research has received a favourable ethical opinion from the Research Ethics Committee of the Faculty of Business and Social Sciences at Kingston University London. This is to ensure that the dignity and well-being of participants is respected. She also obtains DBS certification which is automatically renewed every year.
If you would like to know more about the study or Ifigeneia’s work, please contact us.
If you would be interested in taking part in the study, please complete the form below. Thank you.
As part of the Nystagmus Network virtual Open day 2020 and as a new initiative to get younger people involved with the Network, the charity is creating a new online community for young people living with nystagmus.
This community begins on Instagram and is a place for young adults and teens to share their stories, read about others with nystagmus and feel empowered about their lives.
They can get top tips, access useful content that is shared with the main Network and see funny and relatable posts.
Mainly, they can find out about other people their age growing up with nystagmus and see that they are part of a huge community.
There will be regular posts to share events as well as interactive stories for you to ask questions and get answers from experts and your peers.
It’s an accessible place for everyone.
Please do share this with any young people you know, follow us at @NystagmusYouth and message us if you’d like to be involved in sharing your own story.
This account was set up by two Nystagmus Network volunteers: Ahrian Taylor and Jaina Patel.
There will be a virtual parents’ forum at 2pm. Share experiences, make new friends. This session will be led by Marie Travers, herself the parent of a child with nystagmus.
There will be a virtual adults’ forum for people living with congenital nystagmus at 3pm. Meet others, make new friends, share experiences. This session will be led by Daniel Williams, an expert in accessible employment who himself lives with sight loss.
Professor Chris Harris from the Royal Eye Infirmary, Plymouth will be answering your questions on Acquired Nystagmus and Oscillopsia at the virtual adults’ forum for people living with acquired nystagmus at 4pm.
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.
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.
Violinist, soprano, opera impresario and Nystagmus Network member, Joanne Roughton-Arnold chats with Nystagmus Network’s Sue on Saturday 3 October as part of the Nystagmus Network virtual Open Day 2020.
Hear Joanne talk about her experiences of her childhood and offer inspiration to young people with nystagmus dreaming of a career in the performing arts.
What happens when your health problem just doesn’t seem to tick the boxes?
In her new book, What seems to be the trouble? writer, researcher and practising body psychotherapist, Claire Entwistle describes her one woman quest for a treatment – any treatment – that would help her neurological condition and her nystagmus.
Some people have every reason to be grateful to conventional medicine. It has saved their life, or at least made their life bearable.
Others, with hard to treat conditions that are not easy to classify (perhaps not even easy to spell) have a more complicated relationship with the tests and treatments offered by their doctors and may resort to alternatives, which pose problems of their own.
This unflinching, thoughtful, often witty account of one woman’s experience will be of value to anybody living with a hidden or little understood disability and to those who care for or work with them.
Meet Claire at the Nystagmus Network virtual Open Day on Saturday 3 October or order a copy of her book from the Nystagmus Network online shop.
The Nystagmus Network is working hard to bring you closer together with other people living with nystagmus or with parents and carers of children and young people who have the condition.
We are now running online support groups for adults with congenital or acquired nystagmus and for parents and carers. You can join zoom chats or stay in touch by email until it’s safe for us all to meet up face-to-face again.
