nystagmusmum has already made her Nystagmus Network bunting ready for her ‘nystagmus in the open’ garden open day on Sunday 24 June. Now she just needs to get on with the planting, weeding and tidying!
April 9, 2018
Nystagmus Awareness Day – 20 June
In 2018 the Nystagmus Network have declared 20 June the new permanent date for Nystagmus Awareness Day. Since 2013, they have celebrated Wobbly Wednesday in November, but in 2018 it will be in the summer and 18 to 24 June will be a Wobbly Week.
In future years 20 June will not always fall on a Wednesday of course, but for those with a love of alliteration, there will always be the opportunity to celebrate a Wobbly Wednesday within the Wobbly Week containing 20 June.
To mark this change and encourage as much participation as possible, they will be encouraging everyone to make the most of the time of year by getting outside to raise awareness and fundraise, with the theme ‘nystagmus in the open’.
For more details, please see the Nystagmus Network website.
July 19, 2017
Nystagmus and stroke
It is well reported that those who suffer a stroke often experience difficulties afterwards with their sight, alongside other more recognisable symptoms, such as partial paralysis or slurred speech. Dependent on the type of stroke, difficulties can arise with peripheral vision, vision processing and eye movements, including nystagmus. Where nystagmus is acquired, following a stroke or similar medical trauma, the effects can be disorientating and debilitating, as the individual begins to deal for the first time with a moving image of the world.
This theoretical knowledge has been brought home to me recently, following my elderly father’s stroke, 10 days ago. My father has suffered a right side brain stroke which means that the left side of his body has been weakened, affecting his mobility, his speech is slurred due to the drop on the left side of his mouth, his cognitive and sequencing abilities are reduced and his peripheral vision on the left side is impaired. All in all, this is a devastating condition for him and everyone supporting him.
Dad doesn’t have nystagmus-like lack of eye movement control, but he is unaware of people and objects on his left side and cannot read text. He can recognise faces when nursing staff or visitors arrive in front of him and can see the clock on the wall, only too aware of how slowly time seems to be passing as he waits impatiently for some sign of recovery.
Formerly an avid reader, devouring his favourite books on military history, Dad has asked me to take home his reading glasses. If they remain at his bedside they will simply serve as a reminder of the pleasure he is currently denied. His consultant explains that it is not the eyes which are damaged, but rather the brain’s ability to process messages sent through by them. Until the brain can recover, Dad’s reading glasses must remain safely tucked away in my handbag, to be offered again gently at each hospital visit in the hope that today he will be able to select his own lunch dish from the menu card.
The Nystagmus Network provides information and support to people affected by Acquired Nystagmus. The Stroke Association offers a wealth of guidance to people affected by stroke, their families and carers.
Get well soon, Dad. Mary will be waiting here for you.
Dad and his beloved Mary
January 9, 2017
Happy New Year from @nystagmusmum
nystagmusmum (and Ailbe) have returned from a refreshing and relaxing New Year break in North Yorkshire, full of energy, enthusiasm and ideas for the new nystagmus year ahead.
Can’t wait to get back to work with the Nystagmus Network.
For information and support or help with fundraising, please email info@nystagmusnet.org
Happy 2017!
November 9, 2016
October 5, 2016
Just one month to go till Wobbly Wednesday 2016
Please see the Nystagmus Network website for lots of ideas and inspiration on how to join in all the fun of Wobbly Wednesday 2016.
May 10, 2016
nystagmusmum at #NystagmusNetwork2016
It was lovely to meet so many people at the Nystagmus Network Open Day 2016 and put faces to all those names at last! It felt very much like a family day to me with friends and relatives coming together to celebrate and learn. Among my personal highlights were sharing experiences with other mums, trying to beat Richard Osman to the top of the leader board on the Tweet Wall and, of course, those leaping children in their brand new Nystagmus Network T-shirts!
January 25, 2016
Join me in Reading
On Saturday 7 May nystagmusmum will be joining the Nystagmus Network in Reading for the annual Open Day. It’s the one day a year when we all get the chance to meet up with parents, carers, children and adults with nystagmus from all over the country to share notes, swap stories and learn all there is to know about nystagmus. There’ll be lots of medical experts on hand too to tell us about the latest research into therapies and diagnostics and education specialists with advice on getting the best for your child at school.
So please join us at the Hilton Hotel. Book your place today at the Nystagmus Network Open Day.
nystagmusmum 