Tuesday, 27 June 2017

Why macular disease really racks me off! - Graham

During Macular Week we wanted to post an article from someone with a macular condition - our thanks to Graham for sharing his story.

Since my mid-thirties I have known that I have Stargardt's, a form of macular disease. It has crept up on me since then, messing around with my jobs, my hobbies, my confidence, my ability to travel, do my day to day chores and even watch TV.

At 63 years old and now registered severely sight impaired, I no longer work and can't even shop for myself. Still, never mind. In spite of all this I am reasonably happy. Life IS ever changing for all of us. The Olympic champion of 30 years ago could still have perfect sight but be stuck in a wheelchair with a chronic arthritis issue and might be more than happy to swap conditions with me.

My Stargardt's doesn't hurt. I don't need uncomfortable treatment for it and other than another condition that limits what I can do physically, I don't have any complaints.

My main issue with the loss of central vision is the fact that I can never see the flippin' thing I am trying to look at! My side vision is reasonably OK and this is vital for general spatial awareness and navigation with the aid of a long cane but WHAT DOES THAT FLIPPIN' WARNING BOX SAY THAT HAS JUST POPPED UP IN THE MIDDLE OF MY SCREEN??

The NVDA screen reader I use on my PC is pretty good but unfortunately it can't read warnings. That is an illustration of the general kind of frustration someone with macular disease has to put up with every minute of every day.

I can 'wobble' my eyes around as much as I like but I can't see the bit I am looking at and never will again. I have tried to train my concentration to think about what is at the side of the grey hole but in spite of some success with big bold text, this is very tedious and I have lost interest.

The answer? Think outside the box... talking magazines, newspapers and books mean that with a bit of help initially, you can keep in touch with written media and with the right easy-to-use radio, tablet and smartphone, you don't actually need to read text any more.

Over the years I have found help and advice from staff and volunteers at SRSB.

Not all this stuff will suit you. For example, I can only use a smartphone for taking and making calls, listening to text messages I receive and listening to my emails plus listening to music and the radio, and that's it. For me, that's a result.

Talking books and magazines however are dead easy to get to grips with as the readers are designed to be easy to use. Modern TVs also have optional audio description for many programs and your scales will tell you if you have eaten too much rich food!

So in conclusion, yes, macular disease is a pain in the **** but if you attack it using technology and a positive attitude you will find it isn't the end of the world.


Thursday, 22 June 2017

A Day in the Country - Dave

This blog contribution is a fictional story from Dave, who is sighted, but his daughter Amy is visually impaired, so he wanted to imagine a day in the country from his daughter’s perspective – thank you Dave!

Me and my friend we like to go walking, usually at the weekend and we always manage to get somewhere at some time that feels special to us. As long as it is out of town, away from the hustle and bustle of city centre life with the hundreds of people getting in your way and then the noise from all the cars and vans and buses and roaring motorbikes. As long as it is out of town anywhere is fine by us.

Across the moors, through the woods, along public right of ways at the side of fields, over streams with the sun on our faces and the gentle sound of water trickling over the rocks and stones of the river bed that have been in place for goodness knows how many hundreds of years, oh yes, out of town always.

So, on the day for our next walking adventure we had our backpacks ready with emergency rations of food and emergency rations of high energy drink and of course, Pepsi Cola. Well, it is thirsty work all this walking. We are always well prepared with all weather clothing - t-shirts for when the sun is out and rain macs for when the weather forecasters have got it wrong again, and always one piece of really warm and snug clothing should the temperature suddenly drop to near freezing, or any time the sun goes behind a cloud in my friend's case!

The last thing to do before setting off is to tie up my hiking boots, yes, we are going hiking, even though my friend calls it walking. We got to our starting point by bus, my friend's dad normally drops us off at our chosen spot in his nice car but on this day even though it's a weekend, my friend said her dad had a very important meeting to attend which my friend said is usually a thirty minute meeting to decide what to talk about at Monday's meeting and then four hours on the golf course before retiring to the bar for a pint and a bite to eat. Sure is tough being Chief Executive of a company.

We soon found ourselves deep in the woods following a well-used path and we talked and talked until we were breathless about pop music and world affairs and pop music, yep, we are pretty well clued up on which pop star is the latest hot star.

I heard girls giggling and feet pounding, coming towards us, a group out jogging, and I felt like saying, slow down, you go too fast, to get somewhere quick you miss half the fun of getting there, you miss listening to the birds singing in the tree tops and hearing the heather rustling in the breeze.

We found the stream, and lay down for a rest on the soft grass and it is so quiet and so very peaceful as we ponder life. How many people rush through each day? When they say "how are you" do they hear your reply? Have they ever lost touch, let a good friendship die, because they never had time to call and say "hi"? Hear the music before the song is over?

Then we are back home, my friend makes me a nice refreshing mug of warm chocolate and finds a little piece of cake to go with it. Me, I take off my hiking boots, stretch and sit back and fold up my stick, for I am blind.

Enjoyment is out there, it just needs finding.

Thank you for reading my story.

Monday, 12 June 2017

What I got from the Optimeyes Project - Mike

MikeOptimeyes was a two year project running from April 2015 to the end of March 2017 and its objectives were to: 

  • identify people over 50 who are at risk of developing, or who are living with sight loss
  • support older people living with sight loss and in need of help, and link them in with their local sight loss organisations to help them access the required support
  • prevent isolation and encouraging independence
  • raise awareness of the importance of eye health and regular eye health and sight checks

Optimeyes, a good play on the word 'Optimise' which means to make something as good as possible, for example, we need to optimise our use of existing technology.

On a personal basis, Optimeyes has changed my lifestyle considerably. Following two strokes and a heart attack, I was certified visually impaired in both eyes. I was seeing visions and was convinced that I was suffering with dementia.

I became housebound for three months, not mentioning that I was convinced I suffered from dementia to anyone, not to my wife, my two sons, my doctor or my Neuro-opthalmology Consultant.

Then my life change came. I was put into contact with SRSB and received a visit from Joanne, a Community Advice Officer, who mentioned that some VIPs (Visually Impaired People) experience visions called CBS (Charles Bonnet Syndrome) and that there was a support group at SRSB. I joined the group and for the last two years I have produced a monthly CBS poem for them.

I also belong to the Creative Writing Group. It was at the Writing Group that I met Liz Bowman who had just started as Mobile Information Officer. Liz also became a project worker for Optimeyes. I immediately offered to become a volunteer with that unit, and also Optimeyes, and was accepted.

Later, Liz became Community Engagement Officer which included work for the Optimeyes project. I assisted her with VIA (Visual Impairment Awareness) training sessions, eye health talks, etc.

All these tasks led to me campaigning to raise awareness of CBS through outreach events, online research, joining focus groups at SRSB and RNIB Action Group and potentially becoming involved at a national level with Esme's Umbrella and with the RNIB Action Group.

I have taken part in focus groups and a research project called 'Improving detection and support for older people with sight loss' at The University of Sheffield.

I thank Liz Bowman at SRSB who gave me an opportunity to attend an Action for Sight Loss six week course run by Action for Blind People held in Rotherham. Liz also arranged a two day residential course Confidence Building Volunteer Peer Facilitation at York funded through the Optimeyes Project and a ten week WEA 'Skills for Volunteering' course based at Voluntary Action Sheffield.

Now I want you to think of an electric plug, it has three prongs. Earth, you can go to earth. Negative you can take the negative way, or Positive, and I chose the positive way.

Positive thinking is more than just a tagline. It changes the way we behave. I firmly believe that when I am positive, it not only makes me better, but it also makes those around me better. There is a new tomorrow - and life still has meaning. I am optimised. Thank you for reading!

About Charles Bonnet Syndrome
A note from SRSB

Charles Bonnet Syndrome (CBS) or ‘Phantom Visions’ as the syndrome is often called, can be a very worrying side effect of sight loss, where the brain tries to compensate for not seeing by creating visual hallucinations or sees things which are not really there.

They may be simple images such as grids and patterns, or elaborate, complex images of objects including animals, people or landscapes.

 Charles Bonnet hallucinations are not a sign of dementia or any other sort of mental illness. They are a normal response of the brain to the loss of vision.

Friday, 2 June 2017

Positivity - Carol

CarolIf there is time for mending
Time to see your troubles coming to an ending

Life is never hopeless however great your sorrow
If you are looking forward to a new tomorrow

If there is time for wishing then there is time for hoping
When through doubt and darkness you are blindly groping

Though the heart be heavy and hurt you may be feeling
If there is time for praying there is time for healing

So if through your window there is a new day breaking
Thank God for the promise, though mind and soul be aching

If with harvest over there is grain enough for gleaning
There is a new tomorrow and life still has meaning

Thursday, 11 May 2017

Mental health and sight loss - Amy

AmyAs this week is Mental Health Awareness Week I thought I would share with you the effect sight loss can have on your mental health.

Some people may think sight loss is just losing your sight but there is so much more to it than that. More than you would imagine.

Coming to terms with sight loss can be a very long process. Everybody deals with it differently, just like every other thing there is to deal with. For me and many other people it took years. So many different thoughts and emotions go whizzing around in your head. None of them good.


Fear of what is happening to you and what will happen to you in the future. Fear of what people think of you, fear of being a burden and annoying people. Fear of making lots of mistakes.


You feel like the only one in the world that is in your situation. You don’t want to be around people because things aren’t the same any more now you need help.

The less you are around people the less you want to be around people and you can become isolated. If all of your family and friends can see quite well, you can feel like the weird one. Not because of anything they have done or said, just because of your sight loss, it makes you different.


The loneliness leads to anxiety. Getting out of the house, even with somebody, can become a massive challenge.

You sometimes sit and worry about when you are going out. You sit and think about everything that could go wrong and how horrible it is going to be. And it will be horrible, because outside there are people, cars, lampposts, road works, every kind of trip hazard you can think of.

Just walking up to the local shops, your heart can be pounding and you just want to cry and run back home.

I used to take slow, deep breaths and try to concentrate on breathing instead of all the anxiety going on in my head.


You feel angry at the world for doing this to you, anger because nobody can make it stop. Anger at people for helping too much, anger at people for not helping enough.

Anger at yourself because you feel like you can’t do anything right. Anger at obstacles for getting in your way.

Anger because people keep trying to help you when you don’t want it, even though you need it. It takes a long time for family and friends to adjust to when you need help and when you don’t.

Out of control 

For me it felt like my whole world had exploded and all the pieces were flying off in all different directions and spiraling out of control.

As hard as I tried I just couldn’t get all the pieces back and fit them back together properly.

I lost control of my life and I lost control of myself.


You can feel really depressed because your life has changed, probably forever. You can feel useless, worthless and like everything is pointless. It feels like there is no future. The only future is one with sight problems and you don’t want that.


Some days you feel just a few of these feelings, other days you feel all of them. Some days, you just don’t know what to feel, there are so many to choose from, so you just feel numb.

Eventually you come to...


I believe that the acceptance stage is when you finally feel ready to move on and rebuild your life. It won't be the same, but in some ways it might be better. Yes really! Acceptance itself takes time.

Six years after my sight got worse I have only just started being around other visually impaired and blind people. I didn’t want to have friends with similar problems to me, or be part of any special groups. Finally I am ready to do that and it has helped me.

It does feel really good not to have to say “sorry about that, I can’t see very well” all of the time. At Sheffield Royal Society for the Blind (SRSB) everybody knows. I feel now that I have been going there, I have finally finished my acceptance.

Six years on and I am getting out a lot more, I am closer to my friends than I've ever been and am loving working on this blog for SRSB. I have even started trampolining! I never thought it was possible to do half of the things I have achieved. Every single day I feel so grateful and lucky for how things have changed and for being so extremely happy.

If there is anybody reading this who is struggling to come to terms with sight loss, please don’t do it alone. There are many, many people out there who want to help. Believe in yourself, things will get better even if you don’t believe it.

Friday, 5 May 2017

Trampolining - Amy

When I was at school I absolutely hated PE. It involved sports, shorts, mud and usually being accidentally hit by some kind of ball or bat.

The only two things I was any good at were volleyball and trampolining. I actually looked forward to PE when we were doing trampolining. I wasn’t the best in my group but I was definitely not the worst for a change. I enjoyed it so much I went to the trampolining club after school.

When I left school I left trampolining behind as well. I always wanted to do more, but life got in the way. Then when my sight got worse, I thought now it really will never happen. I really struggle with many much smaller things, staying on the right side of a trampoline seemed impossible.

Life has taught me a lot of lessons, about how life can be bigger and better, but it won't just happen. You need to make it happen.

A few weeks ago I started thinking about trampolining again. My first thought was, blind people on trampolines, that just sounds dangerous! But then I remembered that blind people can run, ski, climb mountains and do all kinds of adventurous things. Trying to stay on a trampoline sounded easy compared to all of those things.

I decided to send an email to Sheffield International Venues and see if there was any kind of extra support or help I could get with trampolining. Sheffield has world class sporting places, so if I can’t get the support I need here then it wouldn’t be very good. They emailed me back and offered me a free one to one lesson with a coach, to have a practice and see how it goes.

The days leading up to my lesson I was so nervous. I thought it will either go really well, or really badly. Somebody told me I had nothing to lose and everything to gain. All I could think about was all the different injuries I could gain if it went wrong!

The day came and I climbed onto the trampoline. Standing up was easier than I thought, it was staying stood up that was the hardest part. The trampoline is so bouncy and wobbly when you are not used to it, I remembered it would be

The trampoline was next to a wall, one end was next to another trampoline and joined together with crash mats. This felt better than at school, because there were only two sides to fall off, not four. The two coaches stood on the trampoline at the other two sides, so I couldn’t fall off. All around the trampolines there were mats on the floor, again, not like at school. I felt very safe.

I started jumping and I was wobbling and falling a lot. But that’s how trampolining goes at first. I was quite surprised that it didn’t hurt when I fell. I sometimes get muscle pains around my joints, so I was nervous about this as well. The more I practiced the better I got.

When I was more steady on the trampoline, the coaches got off and stood on the floor. They were stood by the trampoline though to keep me safe. I was talking to the coaches and one of them is the daughter of my PE teacher at school!

As I wasn’t in any pain from falling I decided to try out a few moves. I even managed to do a bit of a routine. The coaches seemed impressed, so did I!

When I came off the trampoline I felt alive, bursting with energy and so happy that I hadn’t broken anything. Until I put my shoe back on and realised I’d broken my toe nail!!! It hurt but I was relieved that’s all it was.

It’s taken me thirteen years to go trampolining again and now I plan to keep going back every week. Please don’t be scared about trying new things because of your sight. If you ask then you might get more support than you realise. Don’t think too much and talk yourself out of it like I always used to. Follow your dreams, don’t think, just do it!

Wednesday, 26 April 2017

Disabled Access Day at Barclays Bank in Sheffield - Gail

One Friday in March I went to Barclays Bank on the corner of Pinstone Street and Barkers Pool with Jane from SRSB as part of their Disabled Access Day.

We were warmly greeted by Stuart the Manager who introduced us to several members of staff. After an introduction by Jane she told them about SRSB and their role in supporting people with sight problems. I then spoke about what SRSB meant to me as a client.

The staff then all tried on the 'Sim Specs' which demonstrate what it is like to be visually impaired and asked lots of questions. The staff were very friendly and the atmosphere was very relaxed.

Next, Jane set up her stall, I volunteered for balloon blowing and Jane had also taken some equipment from the shop at SRSB.

Stuart spoke about their talking cash machines and as I have never tried one I quickly volunteered in trying this out. After a brief orientation of the cash machine Stuart handed me a pair of headphones and I was ready to start. After plugging the headphones in I was asked to press 5 to begin, asked to put my pin number in then asked to press 1 for a receipt or 2 if not needed, then asked to press 1 for £10, 2 for £20 etc.

After pressing the amount required to my great amazement the money popped out. I have not used a cash machine for 30 years and it was quite exhilarating. This simple task that sighted people take for granted really does seem like a great mystery to me as a blind person. I now feel confident in using this branch taking along my headphones and drawing out cash independently.