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.


1 comment:

  1. Thanks Graham for sharing this with us. It's good that you've got a positive attitude with it. Technology is brilliant these days and it can help us with a lot. Will be great to see more of you on the blog if you ever have anything you want to put on. Thanks again.