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Blogs & News

Issue 5 - 5 September 2017

Hi,

Centenary Celebrations

In many ways this year CVI celebrates its 100th birthday.

In 1917 the neurologist George Riddoch's paper on visual disturbances he had noticed in patients who were cortically blind, and Poppelreuter's paper on impairments of visual search were both published. Loss of vision due to damage to the occipital lobes, and visual field loss were both already well known and reported, but this was something new. George Riddoch was describing a visual phenomenon where patients, soldiers from the first world war, were showing visual responses in areas they would not have been expected to see because of the damage to their occipital lobes. Riddoch was describing blindsight, a facility we all have whereby visual information coming in from the side, creates a quick reaction. Sometimes people describe this as coming from our hunter-gatherer days, and a necessary fast response to an attack by a wild animal. In modern life, it may be experienced when one realises they slammed their foot on the brake of their car as something jumped out, reacting before they actually saw the hazard.

Poppelreuter also investigated the vision of brain injured first world war soldiers, examining those whose visual search was impaired, and devising approaches to testing vision that are used to this day. There were some earlier publications, but these papers published in 1917 marked the beginning of widespread interest in the field of what we now refer to as cerebral visual impairment.

Blindsight is something, a hundred years later, that still fascinates people who see potential for rehabilitation using blindsight where there is no sight due to visual field loss. There is also ongoing interest and research into lack of parallel processing by the visual system, that limits how much can be seen at a time, as we describe in our new Simultanagnosia Spectrum Mixer Board section.

As an international community including doctors, scientists, teachers, parents and people with CVI, over the last hundred years, we have continued to grow and learn from each other. Fundamental to learning is that we should always accept that what we know can be improved upon, or developed, or in some cases might just be wrong.

The knowledge we hold today is merely a temporary foundation stone for what we learn tomorrow.

The reason this is important, and why as a community we need to work together to learn, is because of

  • 1. how challenging having CVI can be
  • 2. the enormous numbers of people who may well be affected, most of whom go undiagnosed, and
  • 3. most importantly, how much there is that can be achieved with knowledge and understanding.

The most helpful strategies can cost virtually nothing (if anything), as we demonstrate with our CVI Pathway Amelia's Great Climb. We also looked at reading and writing, which we know is challenging for many with CVI, and found that the three key tools are patience, knowledge and motivation.

We don't actually know the numbers of people affected by CVI. There is a fascinating study going on in England (The CVI Project thecviproject.co.uk) looking at CVI across a mainstream population in schools, where previously it may have been undiagnosed. We know that CVI can cause autistic behaviours, as we are explaining in our CVI Autism blog. We also know that CVI can remain undiagnosed in people with profound disabilities, who do not have reduced visual acuities. Where else might CVI be hiding? We have a few more ideas. We believe that the number of people currently diagnosed with CVI may literally be just the tip of the iceberg, entailing many people suffering because they are unaware they have the condition. Gordon Dutton talks about this in his blogs 12 and 13, The Knowable Unknown. How can one know they have an unknown condition? It's a tricky concept, but is fundamental to grasp, because of the sheer volume of people likely to be affected by this knowable unknown condition, and how much can be achieved to make their lives considerably easier.

At CVI Scotland our knowledge evolves with every person we engage with, and we try to add these experiences to the CVI Scotland website (please see Updates). We engage with people from all over the world (currently people from eighty countries are using our website), and the information we provide is relevant wherever one is.

The only way forward is to learn, and to learn we must sometimes be prepared to let go of what we though we knew - we weren't wrong yesterday, we are just a little wiser today.

Best wishes,

The CVI Scotland Team

PS The CVI Society convention is on 3 November 2017 in Bristol, England. There is a fantastic programme including presentations from Gordon Dutton, Cathy Williams who runs the CVI Project (mentioned above) and Richard Bowman who runs Great Ormond Street Hospital's CVI Clinic. The convention is for everyone and anyone with an interest in CVI and is special in welcoming a mix of professionals from many different backgrounds, including doctors, therapists, teachers, support workers and parents / carers and people with CVI. It's a unique occasion in the CVI calendar. For more info go to cvisociety.org.uk/cvi-convention

In this issue...

  • CVI Pathway Amelia's Great ClimbFonts
  • Fonts
  • Reading to your child for Fun
  • Simultanagnosia Spectrum Mixer-Board
  • CVI Autism Team Blog
  • Gordon Dutton's Blogs
  • Nicola McDowell's Blogs

CVI Pathway Amelia's Great Climb

Amelia has both dorsal stream dysfunction, and cerebellar issues, the latter affecting how she processes time. We looked at all of Amelia's challenges both separately, and how they affected her when working simultaneously. The outcome was not a hugely complex conclusion, but extremely simple clarity.

Fonts

Following a discussion with parents on selecting a font size, we put together some suggestions based on their experiences, with guidance from a VI teacher who has expertise in CVI and literacy.

Reading to your child for Fun

In this wonderful section, parents share their stories and tips when it comes to reading to their child. The purpose of CVI Scotland is two-fold, firstly to provide the knowledge to empower parents, and secondly to share their experience to help other parents.

Simultanagnosia Spectrum Mixer-Board

We talk about CVI as an umbrella term for a spectrum of spectrums, and here we try to break down each part of the simultanagnosia spectrum, as far as we know, from the different accounts and experiences people have shared.

CVI Autism Team Blog

Having quickly found themselves tide up in knots, the team went back to the drawing board, and are considering two children with CVI and autistic behaviours, and trying to figure out the causes. In this fascinating and moving blog, they consider the experiences in the first year of life.

Gordon Dutton's Blogs

Gordon, in his blogs 12 and 13 explains the complex phenomenon of understanding a condition one does not know they have got, and why it is fundamentally important.

Nicola McDowell's Blogs

Nicola, in her blogs 10 and 11 explains her challenges at school, and how she reached the only reasonable conclusion, she must be stupid.

PPS All additions and changes on the website are communicated through our Updates section on the homepage, and via Twitter @scotlandcvi and our CVI Scotland Facebook page. Copies of previous newsletters can be found in the News & Blogs sections on the website. To sign up to receive the next and future newsletters please click here.

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About Us

At CVI Scotland we are devoted to helping people understand cerebral visual impairments, and together working towards developing the understanding of this complex condition.