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

 

 

New play guide for visually impaired children

The RNIB have recently produced a play guide to help parents, teachers and carers of children with vision impairment create playtimes where the child can develop and explore their senses. Written in collaboration with two parents, the guide includes stimulating toy suggestions and ideas to create positive play environments.

You can find out more and download a copy of the guide at:
www.rnib.org.uk/play

 

“I’m very delighted with your progress”

When my daughter was in primary school the Senco suggested it might help if she learnt to touch type. So began our relationship with the ‘very delightful’ Mavis Beacon programme. My daughter did learn to touch type using recordings of Ms Beacon’s voice with those delightful sporadic words of encouragement echoing in all of our ears.

She still touch types today and what a life skill it has proven to be. It was invaluable throughout secondary school and university and remains so now that she is working, though it doesn’t necessarily help her actually respond to those 200 emails sitting in her inbox!

The RNIB still recommends today that children with visual impairment, however slight or severe, learn to touch type. Mavis Beacon may have neen superceded by more up to date online courses and programmes, but whichever one your child follows I can guarantee that they, too, will be “very delighted” that they did.

nystagmusmum goes to VIEW

nystagmusmum will be travelling to Birmingham tomorrow to attend the

VIEW Professional Development Event 2016 

on behalf of The Nystagmus Network.

I’m really looking forward to working alongside teachers from across the country who support children and young people with visual impairment in their schools every day.

Nystagmus Network joins #GivingTuesday

This year the Nystagmus Network has signed up to #GivingTuesdayUK, the national day of giving something back. Giving Tuesday is Tuesday 1 December 2015.  You don’t have to give money to take part. You can simply pledge to raise awareness of nystagmus by explaining it to just one other person. The more people who know about nystagmus, the better it will be for all of us. Or you could make #GivingTuesdayUK your opportunity to offer your services to NN as a volunteer. If you have a few spare hours, why not email us at info@nystagmusnet.org and share your ideas on how you could help us support those affected by nystagmus. If you do want to make a #GivingTuesdayUK donation, please follow this link: https://www.justgiving.com/nystagmusnetwork/donate/

nystagmusmum attending the Albinism Fellowship Conference 2015

This weekend Albinism Fellowship will be holding their Family Conference 2015 at the Hayes Conference Centre in Derbyshire and nystagmusmum is delighted to be joining them.  There will be a Nystagmus Network stand as part of the all day exhibition  on Saturday and nystagmusmum will be running a workshop on Saturday evening entitled Nystagmus – a quick guide for parents.  I look forward to meeting you all there.

Knitting for Wobbly Wednesday?

Some people give talks in hospitals or schools on Wobbly Wednesday, others organise coffee mornings or quizzes.  It really doesn’t matter what you do as long as you make more people aware of nystagmus.  Some people make a lot of jelly (well, it is very wobbly!) and some people just go a little bit too far and knit a whole lot of jelly babies!

https://handmadebysoo.wordpress.com/2015/08/03/wobbly-wednesday-is-coming-soon/

Whatever you’re planning to do this Wobbly Wednesday, make sure you have a whole lot of fun and let Nystagmus Network know all about it.

http://www.nystagmusnet.org

https://www.facebook.com/NystagmusNetwork

Tweets by press_nystagmus

Are you ready for Wobbly Wednesday?

How disabled are you?

The Christmas holidays are a time for great family joy and fun, but also, occasionally, an opportunity for some deeper reflection on life, the universe, and nystagmus.  Following a long Boxing Day walk through muddy fields, wearing our brand new wellies and, of course, our Christmas jumpers, we got to wondering whether nystagmus sufferers really see themselves as disabled or not.  And what does disability really mean, anyway?  Is it just a frame of mind?

I fear we may have come up with way more questions than answers, but maybe that’s useful in itself.  Shouldn’t we all think about nystagmus in different ways?  As a disability?  As a gift?  As part of who we are?

As young parents of a newly diagnosed baby, all we wanted to do was to meet nystagmus ‘survivors’, adults who could tell us how it had been for them, the highs and the lows.  How they had dealt with their nystagmus at every milestone. What we really wanted to hear was that they had lead, and were still leading, ‘normal’ lives, whatever that means.

Thanks to the Nystagmus Network we met lots of truly inspirational role models, adults and children, who were living with nystagmus and could allay most of our fears.  Sadly, we have also met people with multiple problems, not ‘just’ nystagmus, where challenging physical and learning difficulties are compounded by an inability to see clearly or quickly.  In these cases, sometimes simply recognising and separating out the symptoms of nystagmus can make the lives of these people and their carers a little easier.

If you are one of the ‘lucky’ people, who apparently sail through life with nystagmus, encountering no more than a few bumps and bruises along the way, cleverly concealing your wobbly eyes from all but the most observant of your acquaintances, then please spare a thought, now and again, for all the other adults and children with nystagmus.  Share with them your successes, yes, but also, please, your struggles.  We know there will have been some.  You may not see yourself as disabled.  Others don’t either.  Your positivity, your confidence, your strength, can help enable us all.

Yay! It’s #WobblyWednesday!

It’s about time everyone knew about nystagmus, so let’s get the social networks buzzing!  Wobble along with us on Twitter #WobblyWednesday.