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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Why Braille is Still Relevant in the Digital Age

For those of you who aren’t aware, last week was National Braille Week, so now is as good an opportunity as ever to talk about why this form of communication continues to be so important in the VI world.

Most people know that Braille was invented by Louis Braille, a nineteenth-century Frenchman who accidentally blinded himself while playing with tools in his father’s workshop at the age of three. But did you know that he had come up with the now-familiar six-dots system by the age of just 15, and published his findings when he was 20? However, scepticism of the system meant that Braille wasn’t on the curriculum even at the Royal Institution for Blind Youth in Paris, where Louis was a professor.  It took until two years after his death for Braille to be implemented there, after continual demands from blind pupils.

Today, Braille is used by over 150 million people across the world.  However, in an age in which digital technology is advancing at an unprecedented pace, and voiceover and voice-activated devices are becoming more common and readily available, many people no longer consider Braille to be as essential for communication.  However, whilst it is certainly true that voice-activated products can be extremely useful for a VIP, this does not eliminate the importance of Braille.  Being a fully-sighted person myself, I once asked the opinion of a VIP how they felt about Braille being considered less important nowadays.  He responded, “Imagine if someone said to you that you were no longer allowed to read or write text, and the only way you could receive or impart information was aurally.  It would have a huge impact on your life.”  And he’s right- being able to read and write Braille opens up many more opportunities for VIPs than they would have otherwise.  Braille is important to help improve people’s literacy rates, which in turn aids people in the workplace.  And with its incorporation with recent developments in technology, such as portable Braille Notetakers and Braille attachments to smart devices, people who are Braille-literate are easily able to read and write wherever they go.  Modern technology is therefore making Braille more accessible, rather than making it obsolete, and is a great tool in helping VIPs to become more independent.  As Helen Keller said, “We, the blind, are as indebted to Louis Braille as mankind is to Gutenberg.”

To find out more about Braille and National Braille Week, click here: https://www.royalblind.org/national-braille-week

For more information on how technology is helping to enhance the use of Braille, click here: https://www.theguardian.com/society/2012/feb/14/technology-brings-braille-back-apple

If you’re interested in learning Braille and would like more information, you can call Abiola on 07983 552855 (classes run every Friday 11am to 12pm at Dagenham Library), or email redbridge@hearingloss.org.uk (Redbridge residents only, classes normally run on Tuesday mornings).

Written by Nicola Stokes

 

 

Team ELVis at National Eye Health Week 2017

In this week’s blog, I’m going to be sharing what Team ELVis got up to during National Eye Health Week (18th – 24th September) in partnership with local optometrists, health and social care professionals, and the voluntary sector.

On Tuesday, we had an ELVis stall at the Sainsbury’s Supermarket in Whitechapel to raise awareness about what we do as a charity and the importance of getting an eye examination. It was a successful day. We spoke to lots of people who had not been for an eye examination in recent years and encouraged them to make an appointment at their local opticians.

Then on Wednesday, we were at Queen’s Hospital in Romford and joined by the local vision impaired group, Sight Action Havering. We had another successful day promoting the charity and sharing lots of helpful eye health tips with hospital patients and visitors.

Our final day of National Eye Health Week activities took place on Thursday. We spent the day at Chrisp Street Market in Poplar speaking to the local community. It was a chilly day but we braved the cold. Moreover, we managed to sign up a new ELVis member. The biggest challenge of the day was ensuring that we didn’t lose our leaflets to the wind!!

During the week we handed out plenty of freebies – pens, trolley coin keyrings, magnets, and mints – which were really popular!

Although National Eye Health Week has ended it’s important to continue looking after your eyes.  Did you know that there is a link between smoking and increased risk of blindness and eye diseases like age-related macular degeneration (AMD)?

Furthermore, to limit the risk of developing an eye condition it’s recommended by the NHS that you should undergo a sight examination at least once every two years.

More information on keeping your eyes healthy can be found by visiting: www.visionmatters.org.uk

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Photo of Sight Action Havering members (Mike, Tracy, Maureen, Sandra and Izzy the guide dog) and Team ELVis (Ray and Graham).

Written by Masuma Ali

 

Your Eyes Be Active Information Event

Free food, games, and the opportunity to find out lots of information about local vision impaired services- this was what awaited us at the Barking and Dagenham Your Eyes Be Active event!

On Thursday 27th July, the ELVis team headed over to the Barking Learning Centre for the Your Eyes Be Active information day, run by the borough’s Disability Services, Enabling Independence Team and Sensory Team. This was a great opportunity for people to find out about the different local services that are available to help support people with sight loss, and to meet the people providing these services.

There was a wide range of stalls at the event. People were encouraged to think about staying healthy, with the opportunity to get their blood pressure checked as well as meeting groups that support VI sports sessions. There was also a stall demonstrating healthy cooking which had some very tasty salads on display. By happy coincidence, this stall happened to be placed right next to the ELVis stall, which made it very convenient when going up to get second helpings!

Others at the event included Guide Dogs, the local Talking Newspaper and several social groups. There was also one of the new Routemaster buses parked outside, giving people the opportunity to have a look around it so that they are familiar with these buses when they come across them in future. There were people demonstrating different technological gadgets (including ELVis’s Graham who had the Amazon Echo and the Google Home device), and others who gave careers advice to those looking to get into work.

As well as stalls, throughout the day people went to talks given by speakers on a variety of different topics. These ranged from how people have benefited from using employability services to an inspirational speaker who made people laugh telling them about some of his experiences throughout his life as a vision impaired person.

All in all, this was a fantastic day.  It was lovely for us at ELVis to meet and chat to lots of new people, and it was great to see so many different services, which all have a part to play in supporting the lives of our local vision impaired people. If you hear of any information event going on near you, I recommend that you go along and check it out- who knows what you might discover?  (And there might be free food, too!)

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Photo of the ELVis team (Nicola, Chris and Graham) at the Your Eyes Be Active information day.

Written by Nicola Stokes

VIPON’s London Zoo Outing on the 29th of June

We were joined by Aqua Ephraim and Tahira Malik at the ELVis office recently and they shared their experience of VIPON’s (Visually Impaired Persons of Newham) trip to London Zoo on the 29th of June.

How was the journey to the zoo?

We all met in Stratford in the morning and we took the Overground train to Camden Road Station. From there we took a bus directly to the zoo. It was a pretty straight forward journey.

What was the group’s impression of the zoo?

The terrain at the zoo was very hilly which made it challenging for some of us in wheelchairs to get around. Also, we didn’t have a member of staff from the zoo guiding the group so we had to rely on ELVis volunteers to be our guides and describe the surroundings. On a positive note, we saw lots of animals including giraffes, flamingos, monkeys…the list goes on! Although, we were disappointed we didn’t get to see the tigers and lions- they were probably resting because of the hot weather. Our newest member Muqqadas who was attending her first outing with the group said she liked the zoo very much and was glad she came along, especially because the group made her feel very welcome.

What was your favourite part of the zoo?

We both loved seeing the tropical fishes and underwater plants at the aquarium. For some of us with some sight the colours of the sea life stood out which made the experience really enjoyable. Also, most of the members really liked the penguins because they could see their black and white skin. We watched them swim and act silly while they splashed us!

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Photo of Shahid, ELVis service user, crouching down in front of a large perspex water tank with swimming penguins.
How accessible was the zoo?

I’d say it’s fairly accessible- the zoo is mostly sight orientated so more work should be done to make it a better experience for VI people. Although saying this we were able to smell the different animals which was helpful for members of the group with very little or no sight. Also, the facilities at the zoo were great and the group loved eating in the restaurant because the air conditioner helped them to cool down.

And what are your overall thoughts about the outing?

It was the hottest and longest day of the year but we enjoyed ourselves very much. VIPON would like to say a massive thank you to the ELVis volunteers and members of staff for making the day accessible and enjoyable for all. Well done!

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Photo of some members of the VIPON social group looking happy and standing besides a very large sign that says ‘welcome to the zoo’.
Written by Aqua Ephraim, Tahira Malik and Ray Calamaan

Dementia Awareness training with Redbridge Council

While here at ELVis we obviously focus on the issues surrounding sight loss, it’s worthwhile remembering that people can have complex needs, and sometimes people with a visual impairment can be experiencing other issues as well.

A couple of weeks ago, a few ELVis members of staff went to Redbridge Council to receive training in dementia awareness, to become Dementia Friends.  Dementia and sight loss are more closely related than some people realise. Both conditions tend to be more common in older people; it’s not unlikely that someone could naturally develop both conditions independently of each other, but sight loss can sometimes be a consequence of the dementia itself, or both conditions might originate from the same source, such as a stroke.

Furthermore, a person living with both of these conditions may experience more obstacles than someone with just one of them.  For example, a person with both dementia and sight loss may get disorientated more easily, have an increased risk of falls, or have more difficulty in recognising people.

Therefore, it’s very important to educate ourselves on what dementia is, and what we can do to help those who are living with it, which was exactly what our training covered.

The training began with talking about common ideas and misconceptions about dementia, and we discussed how people with dementia can still communicate effectively, that there is more to a person than their dementia and that it’s possible to live well with the condition.  These were very important messages, as people can often focus solely on the negatives when they or a loved one are diagnosed with dementia. It was encouraging to learn that the future isn’t always as bleak as people might fear.

Another important lesson that we learned from the training was that, while people with dementia may struggle to recall recent ‘factual’ memories, such as where they went at the weekend, they are in general much better at retaining ‘emotional’ memories.  This means that, if someone visits them and they end up having an argument, an hour later they may not remember that they were visited but they’ll still feel upset, whereas if someone visits and they have a great time, although they might not remember the visit later on, they’ll still feel the happiness that the experience brought them.

Learning more about dementia and understanding more about its causes and effects will definitely help us all when interacting with those who are affected in the future, and all of us are proud to be able to call ourselves a Dementia Friend.  Thank you very much to Redbridge Council for providing this training.  If you are interested in learning more, you can go to the Dementia Friends website: https://www.dementiafriends.org.uk/.

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Photo of Ray, Nicola, and Bhavini from ELVis with Mike O’Hanlon, Dementia Friends trainer and Diversity Programme Manager at Redbridge Council.

Written by Nicola Stokes

Visit to Marion Richardson Primary School for Vision Impairment Awareness training

Hassan Khan from SELVis (South East London Vision) assisted us by delivering Vision Impairment (VI) Awareness and VI cricket to children from Marion Richardson Primary School in Limehouse on Friday, 23rd of June.

Hassan spent the day providing basic vision impairment awareness by:

  • Talking about terminology and wherever possible to use everyday language with vision impaired/disabled people
  • Demonstrating and passing around various equipment/objects such as the braille notetaker, bumpons, VI cricket balls, VI tennis balls, and simulation spectacles
  • Explained basic guiding tips
  • Showing the children a short video of England ODI captain Eoin Morgan training with the England blind cricket team
  • Speaking about his personal sight loss journey

The children then had the opportunity to practice some of what they had learnt by taking part in practical activities which included the following:

  • Simple ball exercise to demonstrate how important listening, hearing and communication is in any VI sport
  • Catching the ball on 1 bounce in a circle
  • Batting in pairs; 2 hits each whilst wearing tunnel vision glasses and the bowler blindfolded

Ms Khan said: “The children really enjoyed the VI cricket and I would like for Hassan to visit my class next year.”

The children also had the opportunity to ask questions, which ranged from “What inspires you?” to “If you could see what would you be?”

All the children that participated in the day received either an East London Vision pen or fridge magnet, which they were extremely thankful for.

Hassan said: “It’s always a pleasure visiting this wonderful school. It’s crucial for us to continue to visit schools such as Marion Richardson to raise awareness of vision impairments. I believe our workshops leave an everlasting impact on the children. An example of this is the children being aware of how to guide VI people and being aware of the things in their everyday environment such as the rotating cones on traffic lights.”

Thanks to Hassan for visiting the school and delivering an excellent awareness raising and educational day for the children at Marion Richardson Primary Sschool .

Written by Masuma Ali