A Macular Degeneration Adventure

by Vince Thacker
(Leicester, UK)

I was diagnosed with dry macular degeneration in 2004. Not that the eye consultant bothered to tell me what my condition was, but I later found out from my own doctor. At the same time, I was registered as blind, which wasn't at all traumatic for me, but came as a blessed relief.

Now I knew the reason why I'd been bumping into things, why I had more trouble holding down my job, why people in the supermarket offered me help without my asking, why I had to use more and more magnification on my PC, and so on. The last straw came when I was hit by a truck crossing the road - luckily I was not badly hurt, but decided it was time to get myself to the eye clinic.

I don't suppose anyone welcomes the news that they are recognized as blind. However, it turned out that in the UK this status entitled me to a tax relief, and some health and social services.

I had been registered as partially sighted since my youth, and that entitled me to next to nothing, and in some ways was an encumbrance when I applied for jobs.

I had a rocky start to my journey in many ways. I left the consultant's room without a diagnosis, and while there, there was supposed to be a volunteer outside to introduce me to the local blindness services. However, nobody had turned up when it was my turn. When I contacted them myself, there wasn't much of a response. I was automatically awarded a white cane, a liquid level indicator and a bank-note identifier where you could slot in the different sizes of bank notes and work out what they were.

When I raised the question of mobility training, the rehab officer told me, "You know that stuff already", which was partly true. I was still very independent and got around fine most of the time.

But now that I have trained with a white cane properly, and am in line for a guide dog, I know that that response was inadequate.

That year was not one of the best in my life. I didn't want to use the B word, didn't want to be seen carrying a white cane and found it increasingly impossible to deal with work, especially as my boss had a very negative attitude to all that was happening.

I eventually lost the job in 2005. At the age of 55, I didn't really expect to work again, particularly as I also needed to care for my wife, who was becoming increasingly disabled as well.

I noticed a curvature in my vision that meant I often aimed for the wrong line of text when I was editing a document, and the effect in general was like living in a fish bowl. I'm glad to say that I don't get that any more. Whether my eyes have settle down in some way or my brain has compensated for the effect, I don't know.

At some stage, I heard of the Amsler grid, printed a copy and still have it on my fridge door so that I have to look at it every morning.

Although the lines look rather patchy, I don't see the wavy lines that might indicate wet macular degeneration.

Also I don't have the classic black hole in the middle of my vision. I have some white patches here and there, and my vision is rather muddled in some ways, but it is now fairly stable. Some days I get more glare, some days I don't notice grey no-parking signs on a grey background as I'm walking about, some days things seem a bit clearer.

So, really, 7 years on from diagnosis (and I suspect a few more since onset), really things are not so bad.

I don't magnify my PC any more, but use a free screen reader (speech) program called NVDA. I use an all-in-one printer to scan the mail, the only difficulties being that I can't fill in forms very easily or cope with hand-written mail. The scanner is a rather slow way of dealing with things, but eventually I get most things done, partly with the help of a wonderful personal assistant.

I use my white cane quite fluently when I need to, and find that instead of the negative reactions I expected in the beginning, people actually go out of their way to be helpful.

For example, when I'm catching a bus or traveling by train. If I look determined enough, people get out of my way when I go through town. Some don't, and some don't even seem to know what a white cane is for, and those people can't have even studied their Highway Code to pass a driving test, because the information is all in there.

And to connect to my environment and see it better, I chanced on photography. It occurred to me that the camera can still see, even if I can't, and indeed this has turned out to be a great means of self-expression as well as a visual aid.

I don't use anything elaborate - mostly disposable film cameras, and a little camcorder the size of a cellphone. I would like a niftier camera, but I don't want to sacrifice spontaneity to fiddle about with endless settings on a more elaborate camera. You can see some of my slide shows at http://www.youtube.com/visigoth999.

I won't win a National Geographic award, but I find it such a blessing to be able to carry on seeing all this beauty.

Although my vision has certainly deteriorated since diagnosis, it has been a very slow process, I'm delighted to say. Maybe all those blueberries and orange bell peppers I have in my diet help to support the vision I've got.

And, who knows, with the research in gene therapy and stem-cell technology going on now, people my age may be the first to get an effective treatment for macular degeneration.

Already, some Stargardt's patients are being tried on a stem cell treatment, and only this week, Oxford University researchers treated a Bristol man with gene therapy for another eye condition that affected his photo-receptors. So this must be the most hopeful time for people with MD, and this research may well produce reliable treatments in our life-times.

So the message from me is simple - if you have macular degeneration, just never give up!

REPLY

Thank you Vince for sharing your story. We are going to do an e-interview with an Orientation and Mobility specialist that will shed more light on this great low vision service and how it can benefit those with macular degeneration.

Kind Regards,

Leslie