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.

ARGH!! ANOTHER SILENT WARNING BOX HAS COME UP. MARIE, CAN YOU GET OUT OF BED AND COME HERE? I NEED YOU TO TELL ME WHAT THIS SAYS...!!

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.

What I got from the Optimeyes Project - Mike

Optimeyes 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.

Positivity - Carol

If 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