David Drakley lives in a world of foggy vision that has been getting worse over time. As part of Retinitis Pigmentosa Awareness Month, the 69-year-old talks about the condition.
David Drakley, of Adlington, first began to have issues with his sight around five years ago when he lived in Poole. After various tests, he was diagnosed with Retinitis Pigmentosa (RP), which affects the retina at the back of the eye, causing gradual but permanent changes that reduce vision. He was also told he had cataracts, which could not be operated on.
Within two years he began to notice his sight deteriorating even more, describing it like ‘walking through a fog.’
He recalls: “I was diagnosed with Retinitis Pigmentosa around five years ago and I also have cataracts. I found out I had Mitochondrial DNA which is a faulty gene causing my eye sight problems. Unfortunately, they can’t operate on my cataracts. Because of this, I have been registered Sight Impaired.
“My eyesight was never really an issue before that. I was still driving and everything was ok.
“Then my eyesight started deteriorating. I had moved to Adlington and started to see the eye doctors at Wigan Infirmary. It had got to the stage where it was not quite an issue but it was annoying. But I put my head in the sand and ignored it.
"About three years ago, I started to have more serious problems. The best way I can describe my vision is to say that it is like walking through a fog. “It’s like looking in a mirror and watching all the detail slowly fade away. It is more like shadows.
“At my final appointment at Wigan Infirmary, doctors told me there’s no treatment for my condition and nothing more they could do. They passed me on to a nurse who gave me a magnifier with a torch. I walked out of the hospital and thought ‘what do I do now?’ I live alone and was worried about how I would cope without my sight.
“Although my loss of vision was gradual, I suddenly realised that one day it is going to be a really serious problem. I wasn’t in a panic, but the more I thought about it, the more I thought this is a panic situation.
"I could no longer use my computer and I felt it was hardly worth watching the television any more. There were so many things I wanted to do and all of a sudden I couldn’t do them. My mobility has been affected and I can no longer drive. It’s now impossible to read documents and write. I have to get someone else to do that for me
“I wake up in the morning and it’s just there on my mind until I go to sleep again. It just takes over your life. I worry one day I’m going to wake up and my sight will be totally gone. I just don’t know what I will do then.”
David, a former mechanical engineer, first visited Galloway’s in Farrington Street, Chorley, three years ago and was enrolled on a Living with Sight Loss course. He now attends the regular Tuesday social group.
He adds: “After a search on my computer, I found Galloway’s.
“What I needed more than anything was information. I kept thinking how do I function? How will I make breakfast? How will I get to the shops? All that information I needed to know. It’s terrifying not knowing how to deal with this.
“I needed practical help and the only place I thought I could get this information from was Galloway’s.
“Sight Loss Advisor Amanda Chadwick and Eye Clinical Liaison Officer Glen Sheader at the Chorley site have been brilliant.
“I’m learning that you have to ask for things but you don’t always get the answers.
“The Living with Sight Loss course at Galloway’s was a source of practical information. But I think one of the most important parts of the course was when Glen talked about the grieving process of losing your sight. There are various stages and maybe I have not got through them all yet. I am processing the loss of my independence and also the loss of my passion, which is photography. I remember taking photos of beautiful fields with bright bluebells and that has now gone.
“I got to speak to a lot of people in a similar place to me and the most interesting aspect of it for me was the emotional impact and how people deal with it.
“I also go to Galloway’s to take part in the social groups. I think it’s really important to get out and socialise. I understand how easy it can be to fade away and drop out of your social life when you are living with sight loss. “Galloway’s gives me that place to go to find friendship and support.
“And each time I go, I get to find out more about sight loss and advice on how to deal with things. You learn things as you go along and I pick up tips. I have learnt a few things about technology and aids and I have found I can use Alexa to help me.”
Fact file:
Retinitis Pigmentosa (RP) is the name given to a group of inherited eye conditions called retinal dystrophies.
The retina is responsible for converting light into signals to the brain, giving us the ability to see. But RP affects the retina at the back of the eye and, over time, stops it from working.
It causes gradual but permanent changes that reduce vision.
One of the first signs is not being able to see as well in dim light, such as outside at dusk, or at night. This is often called night blindness.
People may also start having problems with seeing things in their peripheral vision and may miss things to either side of them. It can cause people to trip over or bump into things that they would have seen in the past.
As RP progresses, people will gradually lose their peripheral sight, leaving a central narrow field of vision, often referred to as having tunnel vision. Advanced RP will often affect a person’s central vision, which could make reading or recognising faces difficult.
RP is a progressive condition, meaning sight will continue to get worse over the years. It can happen suddenly over a short period of time and then a person can then have a certain level of vision for quite some time. However, there may be further changes to someone’s vision in the future, meaning they have to keep re-adapting to lower levels of sight.