Did You Know February is Retinitis Pigmentosa Awareness Month?

This February is Retinitis Pigmentosa (RP) Awareness Month.  Retinitis pigmentosa is a genetic eye disease of the retina, and it is estimated that 1 in 4,000 people are affected by the condition.  Because RP is the degeneration of the retina, people living with the condition gradually lose their sight, which can take weeks, months, or years.  Can you imagine what it’s like for someone living with RP to know that one day their sight will completely disappear?

RP takes way an individual’s confidence and independence.  Even in their own home they may fear that they will injure themselves very badly by falling over or walking in to a wall.  Symptoms of RP include affected night vision and difficulty seeing peripheral vision.

Living with RP can affect your emotional wellbeing.  Currently, there is no treatment, and any developments are in the early stages.  ELVis Activities Coordinator, Bhavini Makwana has written a detailed blog entry about her RP diagnosis.  From feeling isolated to coming to terms with her sight loss as a new mother, it’s an inspiring story!  Read Bhavini’s blog entry here: http://bit.ly/2Bp6Ppn.

Just before the New Year, I attended an RP Patient Information Day in central London with Bhavini.  She stood in front of an audience to give a talk about how she has adapted to living with her condition and reassure others it’s not the ‘end of the world’ when you have sight loss.  My favourite part of her talk was when she said, “You don’t need to have sight to have vision, so go out and find your vision and be the best you can!” I remember it very clearly because it’s a really encouraging quote.

At ELVis, several of the members have RP.  One member living in Tower Hamlets describes how he has adjusted to his night blindness.  He says, “I am able to travel in the evening because I use my white cane and I utilise sighted assistance on public transport.  It is helpful and reassuring to have someone there to guide me.” Furthermore, he reveals how technology has helped him to ‘see’.  “I use apps on my phone to tell me the colour of my clothes, and I have a talking thermostat to tell me the temperature of the food when I cook.”

As I mentioned earlier, receiving an RP diagnose can be a stressful time so having a support network is very important.  ELVis members living with RP are able to meet each other at our social group outings and events to share stories, receive peer support and gain confidence to remain independent.  Find out about our upcoming events on our website!

800px-Eye_disease_simulation,_retinitis_pigmentosa
Photo showing a RP simulation of night blindness.

Written by Ray Calamaan

Advertisements

My Top 3 Amazon Echo Skills

There has been great interest in the Amazon Echo since it has been launched and the Echo can do many things out of the box when it is set up such as set timers and alarms and play radio stations.  It is also possible to extend the functionality of the Amazon Echo by enabling its skills.  There are thousands of these, but many are experimental so I thought I’d suggest a few that are really useful.  Here are 3 skills that I have found useful or entertaining.

‘My Talking Newspaper’ skill.  This is a skill that lets you listen to local talking newspapers that are available in the UK. It also lets you listen to the Infosound magazine, the Dot to Dot podcast which has hundreds of reviews of skills and RNIB Connect radio.  To enable it say “Alexa, enable My Talking Newspaper skill” after this to use the skill say “Alexa, open My Talking Newspaper”.

‘The Daily Log’ skill allows you to make notes with your voice.  You just speak the note such as “Here is John Smith’s phone number. It’s 02073331333”.  You can then use your voice to search for John Smith once the skill is open by saying “Search for John Smith”.  You can search for recordings on a particular day or for particular words.  This is a powerful skill, particularly for recording notes longer than a sentence or so.  To enable it say “Alexa, enable Daily Log Skill” then to use it after that say “Alexa, open Daily Log”.

The third skill I want to highlight is called ‘Path of Discovery: Europa’.  It’s an interactive Sci-Fi game.  This skill demonstrates great use of sound effects to enrich the experience of using the Amazon Echo.  The tasks are not too hard and there is plenty of help through the game. So even if Sci-Fi is not your thing, this skill is worth giving a go just for fun!  Like all the skills mentioned here, it’s free so there’s nothing to lose.  To enable it say “Alexa, enable Path of Discovery: Europa” and then to open it say “Alexa, open Path of Discovery: Europa”.

I have written a full review about the Amazon Echo Dot in my previous blog post.  You can read it here: http://bit.ly/2o8uHoW

Lastly, if anyone has come across Amazon Echo skills that they find useful, feel free to tell us by leaving a comment below.

RoyaltyFreeAmazonEchoDotPhotoFromGoogle
Photo of the Amazon Echo Dot. It has a round shape and four buttons on the top.

Written by Graham Page

How I’m Preparing to Run The Vitality Big Half Marathon

The journey so far

I am approximately half way through training for the Big Half, with exactly a month to go.  My first run was a test to make sure I could actually run for at least 30 minutes without collapsing in a big heap on the floor, which fortunately did not happen, and I felt invigorated to create a training plan, using resources from The Big Half marathon website and gathering advice and tips from friends who have previously run marathons.

There were a few initial points to tick off, and which I’ve already experienced the benefit of: get a good pair of running shoes, build up distance and time gradually, download a running app to track progress and take rest days in between big runs.  I wrote up my plan with weekly goals of what distance/time I wanted to reach.  Then suddenly the fear set in, and for the first week and a half of that plan I couldn’t bring myself to run.  I procrastinated through other means of building up my overall fitness; a yoga class, swimming and a couple of long cycles.  This definitely wasn’t a bad idea, as it gave me a chance to exercise and stretch other muscles in the body.

The breakthrough

Thankfully, with some encouragement, I managed to part ways with that apprehension and completed my first 5km run, and survived (side note: stretching afterwards is SO important!).  Each time I’ve trained since I’ve enjoyed it.  I realised that years of telling myself that I wasn’t a runner had instilled a belief that it must be an awful experience.  Running is certainly still challenging, and requires a lot of preparation [tip: set aside a good couple of hours for each run, to find that state of mind, warm up and cool down, perhaps take a shower after], and those first twenty minutes, for me personally, are a huge hurdle.  The self-doubt floods in, and I think about going home, or walking to the nearest coffee shop.  No, that can wait, I remind myself.

It’s all in the recovery

Last week I met with another friend who is taking part in the Big Half and we made more plans – but this time it wasn’t so much about the training, but for what comes afterwards: the Recovery. A huge meal on the Sunday afternoon post-race, then a sauna trip the next day and some more yoga to stretch out our sore muscles.  It’s also important, however, to build in room for recovery at every stage in preparing for the half marathon, and remember that you can’t expect to do it all in one go!

It was a great turning point to start thinking about what follows the race, and that there is still the rest of life to get on with once it’s over, but for now I am taking it, quite literally, one step at a time.  And with just four weeks left I’ve still got some way to go, and every little bit of support has given me a massive boost.  You can follow more of my training progress on Twitter and donate via my fundraising page here: https://mydonate.bt.com/fundraisers/joannalally1

Thanks for reading and all your support so far!  And if you’re free on Sunday 4 March then please come and join East London Vision to cheer me on along with the other race participants!

You can also watch my interview with Ray from East London Vision.

Written by Joanna Lally

 

A Fully-Sighted Person’s Perspective of Working in a Predominantly VI Organisation

Before I had my interview for this job, I had never knowingly had a conversation with someone who was vision impaired.  Suffice to say, once I was offered a position at East London Vision, I had a lot of learning to do!

People sometimes ask me whether there are any differences when working with vision impaired colleagues, and the fact is that there are some small adaptations that I make on a daily basis.  For example, I’ll sometimes be asked to choose the photos to add to a colleague’s piece of work, or if we’re going to an external meeting at an unknown venue, my colleagues might ask me to meet them slightly earlier at the nearest station to help guide them to the location. These are all very minor adaptations that don’t take me much time, and have little effect on my everyday workload.  In fact some adaptations, like describing our surroundings or giving verbal cues instead of nodding or using facial expressions to communicate, are now so ingrained that I find myself doing them even outside of work with sighted friends!

The biggest effect that working with vision impaired people has had on me is probably how much I have learned.  One of the main skills I have gained is sighted guiding, which I do on a regular basis.  But despite having been guiding various people for the past two and a half years, I’m still constantly learning.  I once told someone in a bus that they were able to sit down, but neglected to tell them that the free seat was the aisle seat and not the window seat, which resulted in them trying to sit on someone’s lap.  Suffice to say, I now always specify which seat it is that’s free!

Perhaps the most important thing I’ve learned through my time at ELVis, though, is how much is possible for people with sight loss.  Losing sight is often something that fully-sighted people are very afraid of, and people will often say they’d rather lose their hearing or a limb than lose their sight.  However, since working with many VIPs and seeing how they’re able to live a life that is just as (and often more) active than mine, I have to say that the thought of potentially losing my sight in the future, while of course it would still be difficult for me to adjust, is no longer the scary prospect it once might have been.

26993406_177665422840968_1633430269247007052_n
Nicola filming a Vision Awareness training video with Alex Pepper and his guide dog in front of the ELVis office in Leyton.

Written by Nicola Stokes