Charles Bonnet Syndrome: The Eye Condition that Causes Hallucinations

Visual hallucinations, ranging from spots of coloured light to full-bodied people, are, for many vision impaired people, a normal part of their sight loss.  These are symptoms of Charles Bonnet Syndrome (CBS), a recognised medical condition which many people with vision impairment experience at some point during their sight loss journey.  As you might imagine, these sorts of experiences can have a profound impact on people’s lives.  However, Charles Bonnet Syndrome is a condition that isn’t always well-understood even by medical professionals, let alone the general public, and so it often goes ignored or misdiagnosed.

I attended a workshop on the first ever Charles Bonnet Syndrome Day on 16th November this year, and there I heard from several people who have experienced the condition first hand.  Their stories brought home just how serious this condition can be.  Some would see grotesque gargoyle-like figures sitting in their living rooms, while others would see patterns covering the floor and walls to such a degree that they became disorientated and couldn’t tell where anything in the room really was.  While there is currently no known cure for CBS, there are various tricks that people can use to help dispel the images, such as wearing sunglasses, adjusting the light levels of the room, or distracting the brain by turning the TV or radio on or off.

However, for many people the first step in dealing with this condition is to understand what it is that they are experiencing.  We heard several sad stories during the day about people with CBS who had been misdiagnosed with dementia, and had therefore never received the right support or treatment for their condition.  It is important to remember that the hallucinations experienced by people with CBS are vivid, but they are visual only, and cannot be heard, felt, tasted or smelled.  But if this is the case, and there is no serious memory loss and no other diagnosed mental health issue, then the hallucinations are more than likely to be the result of Charles Bonnet Syndrome.

The charity Esme’s Umbrella, which ran the workshop in November, is there to give information, advice and support to anybody who is experiencing CBS, or who is concerned about someone they know who is living with the condition.  They can be contacted by phone (0345 051 3925) or email (esmesumbrella@gmail.com), and they also have a website with details of coping strategies and the latest research on CBS, which can be found at http://www.charlesbonnetsyndrome.uk/.  If you would like to find out more about the condition, then please do not hesitate to contact them.

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Photo of the Esme’s Umbrella Charity logo. Its design includes dozens of colourful umbrellas and the words ‘Esme’s Umbrella. For everyone working for the greater awareness of Charles Bonnet Syndrome’.

Written by Nicola Stokes

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How the White Cane Changed Bhavini’s Life!

“I knew I had to stop feeling embarrassed, ashamed and insecure about having a visual impairment and start putting my safety first!”

I was first introduced to a symbol cane, which is small and thin in size.  Its primary function is to let others know that you have a visual impairment and you’re supposed to hold it vertically in front of your body.  It provided me with safety going out in public as people took care to avoid bumping into me.  I would use my symbol cane whilst being guided by my husband.

As my vision deteriorated, going out on my own meant the symbol cane wasn’t enough.  I contemplated whether I could take such a big step by switching to a white cane, which is bigger and longer with a rollerball at the end, and actually use it rather than just hold it which meant everyone could see that I am blind.  I wouldn’t be able to deny or hide my visual impairment or pretend that I wasn’t anymore.

I must say that using a white cane made me feel quite vulnerable and somewhat a fraud.  I mean, I felt I didn’t ‘look blind’, and I was fairly young when I started using it and didn’t know anyone else my age using a cane.  However, when I began to use my white cane more I became comfortable using stairs and escalators.  Furthermore, I discovered that I was able to avoid bumping into bollards, lamp posts, public dustbins, parked cars and any other obstacles, and because of this my confidence grew, which lead to me feeling empowered as I became more independent.  In addition, people became aware and offered help and support.  Also, I’ve learned that bus drivers are required to stop when they see a person with a white cane at the bus stop, which is one of other benefits of using a white cane.

If you’d like a white cane then contact your local Sensory Team as they should be able to provide you with one which has been measured to suit you.  Training is also given on how to correctly hold and use the cane whilst taking care of your posture.

The main advantage of using a white cane is personal safety.  A white cane detects textured surfaces allowing you to distinguish between a pavement and a crossing point.  Most crossing points have a tactile bumpy surface to indicate when a crossing is approaching.  At train stations, your white cane will detect the bumpy lines when you approach stairs and platform edges.

After finding myself in various difficult and dangerous situations in the past, I decided it was time to put my safety first and for my precious daughters too.  I was ashamed and embarrassed of what others would think of me, but I cannot tell you how much I love my white cane now.  It has given me the confidence and independence I need to enable me to go out without feeling scared or anxious, allowing me to feel free and in control.  I’ve even taken my cane on holiday!

Using the combination of both my cane and assistance from transport providers like National Rail and TFL, I can now get around independently with ease.

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Bhavini takes her cane wherever she goes! Photo of Bhavini wearing an astronaut suit and holding her white cane on the surface of the moon.

Written by Bhavini Makwana

Masuma’s Employment Journey in the Sight Loss Sector

“How did you end up working for the sight loss sector?”

This is one of the questions I most often get asked by people, and the one I regularly hear being discussed is whether most blind and partially sighted people end up working for the sight loss sector.

There are around 84,000 registered blind people of working age (18-65 year olds) in the UK, and only 21,000 (1 in 4 compared to 3 in 4 sighted people) of the working age population are in employment.

I feel extremely fortunate to be in the working age figure. My employment journey started with a part-time role as a Braille transcriber at a mainstream college. This job was a great starting point for me in the world of work and being part-time provided me with the opportunity to volunteer and upskill myself at the same time. I initially looked for volunteering roles away from the sight loss sector, not because I had anything against it, but simply due to not having given it any thought.

However, I learnt very quickly that it was rather difficult to find a voluntary role with organisations outside the sector. Also having received feedback from employers that I didn’t have enough experience, I resorted to looking for volunteering opportunities within the sight loss sector and landed myself a number of various roles. To be told by employers that you don’t have enough experience and struggling to even gain a voluntary role outside of the sector was soul destroying, it is a horrible catch-22 situation, which certainly didn’t do my confidence any good. However, the good news is that it seems things have moved on somewhat as I know several people who have volunteered with organisations away from the sight loss sector. Yes, I’m sure it can still be a struggle, but hopefully things are slowly changing.

Not only did the volunteering opportunities allow me to grow and increase my skills, knowledge and experience, it provided a good platform to network. My voluntary role at Waltham Forest Vision (formerly known as Low Vision Forum) resulted in a successful application and interview on a trainee contract. This set my journey into the sight loss sector and I’ve never looked back!

However, to assume every blind or partially sighted person ends up working for the VI sector is completely incorrect. I know just as many vision impaired people who work in the sector as well as don’t.

I would strongly encourage all VI people looking for work to take up volunteering opportunities, to network and build good rapport with people. Some may say I’m one of the lucky ones, and whilst there may be a very small element of truth, it certainly wasn’t all smooth sailing. The struggle of finding employment was real and can definitely be that much harder for vision impaired people. However, despite experiencing knock-backs throughout my employment journey, my proactive self-help approach, positive can-do attitude and, at times, throwing myself into the unknown certainly paid off. I am truly grateful and thankful to the people who have both personally and professionally supported me along the way.

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Photo of Masuma smiling.

Written by Masuma Ali

 

Tribute to My Dear Friend and Colleague Roger Clifton

I first met Roger Clifton when I was volunteering at Beyond Barriers Vision Impaired Group in Tower Hamlets, and the first impression I got was he’s a great guy.

Later I was lucky enough to be asked by Roger to attend an interview at East London Vision (ELVis). And as luck would have it, I was offered a job at East London Vision working with Roger Clifton who was the CEO at the time.

I worked with Roger for over two years. He was so encouraging, had great enthusiasm and was so passionate. It was a joy and a privilege to work with him. I remember him being a very positive person, and all the service users were fond of him. He was a very charismatic man.

Roger was not only my work colleague but he was a great friend. What a sad day when he was took away from us. Roger will be missed but he will be forever in our hearts.

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Photo of Roger Clifton looking very smart in his suit.

Written by Christine Edmead

Why the Snapchat Spectacles Are No Ordinary Pair of Sunglasses

You’ve probably have heard of Google Glasses, but have you heard of the Snapchat Spectacles? If you’re familiar with social media then you’ve probably come across Snapchat which is a popular social media platform (which can only be accessed on smart devices) that allows users to share messages, photos and videos with other users.

Aesthetically, the Snapchat Spectacles look pretty cool, but don’t let its appearance fool you as they are unlike any ordinary pair of sunglasses! You can use these sunglasses to record videos to share on Snapchat. All you have to do is connect them with the Snapchat app via Bluetooth on initial set up. So whenever you record your videos (by pressing the top right-hand button) they will automatically download on to the app when your sunglasses and smart devices are connected via Bluetooth. Then, you can start sharing the videos.

As I own a pair of these glasses (which cost me £130) I’m probably being really bias by saying they’re amazing. Not only do they protect your eyes from sun damage (UV protection), but they can also take away the hassle from having to open the camera app on your smart device and pressing record. This is great when you’re taking part in on-the-go activities like canoeing, riding a rollercoaster or when you’re hot air balloon. However, there have been concerns which have been raised about these glasses in public including invading the privacy of others. There are many places where wearing these glasses would be inappropriate like in public toilets and changing rooms.

Furthermore, if you’re looking for a pair of glasses which record long videos then the Snapchat sunglasses are probably not for you as they only record 10 second videos. However, you can stitch them together to create a longer video. You can also download the videos on to your smart device like a phone or tablet and start sharing them on other social media sites like Instagram.

Let me know what you think of the Snapchat Spectacles– are they’re a good thing, and would you consider buying one? If you have one let me know what your experience is like using them by leaving a comment below.

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Photo of a pair of Snapchat Spectacles in its yellow case.

Written by Ray Calamaan

Service User Daniel Develops His Confidence Attending East London Vision Events

My name is Daniel and I’m 36 years old. In my blog article I will be speaking about my memorable moments attending East London Vision events this year.

I attend the Beyond Sight Loss Group in Tower Hamlets. I have been diagnosed with retinitis pigmentosa, night blindness and tunnel vision. My eye conditions affect me mostly during the evening so that’s when I need my white cane the most!

Coming along to ELVis events enables me to socialise and make new friends. The activities I’ve been along to include a visit to Clacton-on-Sea, a boat trip to Richmond Park and a quiz night in Newham. I enjoyed all the events, although I especially liked the quiz night because it was diverse. There was lots of delicious food to eat, games to play, karaoke and a raffle- which I won a prize from!

All the events I’ve attended with ELVis were accessible. I travelled by minibus to Clacton-on-Sea with the Beyond Sight Loss Group. And there were many volunteers assisting us on the day which was great! They demonstrated a lot of care and understanding towards all the clients. They even joined us on the rides.

I had a nice time getting to know Sandy and her husband, who are both ELVis volunteers. They’re both personable and have a great sense of humour. I enjoyed our conversations. Moreover, Bhavini Makwana who organised the trip came along. Her friendly personality made me feel very welcome, and I felt very glad I attended the trip.

It is very rewarding to come along to ELVis events. Not all places are accessible, and going out with ELVis challenges these barriers. I can now clearly see that my disability shouldn’t stop me from having a good time.

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Daniel (middle) with other ELVis members posing for a group photo during a trip to Clacton-On-Sea.

If you would like to know more about East London Vision, and for regular updates on events and activities for vision impaired people living in East London, please visit www.eastlondonvision.org.uk.

Alternatively, you can contact Nicola on 07914770909 or email Nicola@eastlondonvision.org.uk for more details.

I hope you’ve enjoyed reading my article. Thank you!

Written by Daniel Worrington

Free Upgrade to Windows 10 for those with Assistive Technology Ends 31 December 2017

Hi all. A bit of a technical blog this time round, but this could affect many PC users.

At the end of July 2016, the offer of a free upgrade from Windows 7, 8 or 8.1 to Windows 10 was withdrawn for most users, though the offer for those using assistive technology such as screen readers and screen magnifiers was extended. This extended offer is now coming to an end as of 31 December 2017.

I strongly suggest that anyone using Windows 8 or Windows 8.1 should upgrade their version of Windows before the end of December. Those using Windows 7 may not want to upgrade, though- particularly if they have old devices which may not work with Windows 10.  If you use Office 2003 or older, then I would also suggest that you do not upgrade to Windows 10.

I am very happy to discuss upgrading to Windows 10 and any implications it may have for you. If you live in the East London area then I can also arrange to visit you and help you carry out the upgrade if this is the most appropriate step for you, and of course this service is absolutely free of charge!

You can reach me by calling my mobile which is 07779 441000 or calling East London Vision on 0203 697 6464, or contacting me by email at graham@eastlondonvision.org.uk.

The information confirming the end of Microsoft’s free upgrade offer is tricky to find so I have included a link to the relevant Microsoft blog post at the end of this article.

The post also discusses some interesting Microsoft accessibility improvements in the latest version of Windows 10. The most interesting of these for many readers will probably be the colour filter, which will allow you to quickly set colour choices that will then apply to all programs on your PC.

For info on the end of the assistive technology free upgrade offer visit: https://blogs.msdn.microsoft.com/accessibility/2017/10/17/windows-10-accessibility-update/

Written by Graham Page