"At the hospital I was told youre going blind. Thats what was said. I got upset. I rang my daughter to come and pick my car up. I had a weep it was such a shock. "
Blind Veteran Doris Wilkinson
Imagine not being able to see a loved one’s face. Or put a face to a voice when watching a new blockbuster drama on telly.
Or learn that you passed someone you have known for years without recognising, let alone acknowledging, them.
This is what ‘Mac’ does for you. It’s the Macular Society’s nickname for macular disease in what is now Macular Awareness Week.
For such a tiny part of the retina – just 5mm or an eighth of an inch – the macular makes a huge difference to quality of life.
Macular degeneration is the leading cause of irreversible sight loss in England today.
Jenny Gillett, 85, a regular at N-Vision, the Blackpool Fylde and Wyre Society for the Blind, warns: “It could happen to you. It can happen to anyone.”
Jenny is one of 600,000 people to have lost their central vision, much of their colour vision and the finer detail to age related macular degeneration.
Many more may lose their sight – if not their peripheral (side) vision - if they fail to report changes.
Earlier intervention may stabilise one form of macular degeneration.
The majority of the 2059 people on the books at N-Vision have age related macular degeneration. It goes with the turf in a high retirement area.
However, the charity’s eye clinic liaison officer Linda Sethi says: “We’re seeing more younger people in their 50s and 60s.”
Linda’s handing out information leaflets on macular disease, with specialist medics, today (June 24) at Blackpool Victoria Hospital for the start of Macular Awareness Week.
She splits her time between busy eye clinics there and the charity’s Low Vision Centre where colleagues carry out low vision assessments.
Linda adds: “Our message is get an eye test, make it a routine, and if there are any changes in vision go back to your optician. If they find anything, they will fast track you to professionals for help.
“We also have specialist staff who carry out low vision assessments at the Low Vision Centre. We can help improve the quality of life – magnifiers and other vision aids – and offer other support.
“But it all begins with you. You have to be vigilant with vision and report any changes because the earlier the detection and intervention the better.”
Jenny has made new friends thanks to the charity’s social, activities and sight loss support groups.
All take comfort in the fact their peripheral (side) vision remains; those elusive glimpses mean so much.
Jenny explains: “You learn to look at life in a different way.”
The macular processes central vision via photoreceptor cells that detect light and send signals to the brain which relays them as images.
Early indications of AMD – wet or dry - include blurry or distorted central vision, gaps or dark spots, colour fades, wavy lines and more.
Any changes should be reported, and an urgent eye test booked.
According to the Macular Society wet AMD develops when abnormal blood vessels leak blood or fluid which scars the macular and causes the rapid loss of central vision. It can be treated if caught quickly. Drugs injected into the eyeball or laser treatment are options.
Dry AMD is a slow deterioration of the macula, as the retinal cells die off and are not renewed often over many years. The Macular Society hopes that raising awareness will also help raise funds to find a cure or effective treatment.
Jenny has wet and dry macular degeneration. “I’ve had 79 injections into the eyeball, they’re not painful, you just feel pressure – taking the mask off is the worst bit.
“My vision is very poor. I can see but not see any features. You could go out of the room and come back in and I wouldn’t know it was the same person.
“I’ve had people tell friends that they’ve seen me at Morrisons, and I never spoke. I can’t see them!
“I feel daft having to ask people to check an expiry date when I’m shopping. You get the feeling they think you’re just being a nuisance.
“It’s not as if I’m wearing dark glasses or have ‘I’m partially sighted’ written on my forehead.
“This can happen to anyone. When I was first told I really resented it because I could see how it would progress.
“I have learned to live with it, and I’ve been coming here to the social group for nine years and the activity group which is very good too.”
Olive Hodgkinson, 82, adds: “It’s so important to have eye tests – my opticians spotted macular degeneration and my cataracts.
“I have dry MD so no injections. I’m quite happy so long as I can see something. I came to N-Vision for magnifiers. I joined the social group in November. It’s fantastic and I really look forward to it. We’re all the same – we can’t see each other!”
Elizabeth (Betty) Hudson’s AMD was picked up during routine diabetic eye screening. “I was told macular was starting in both eyes, but I wouldn’t go blind. The optician sent me to a specialist who put me on the sight impaired register and N-Vision helped me.
“I can’t really watch TV. I have quizzes on as it’s the voices that matter. When the big programmes come on it’s a while before I recognise someone’s voice and can follow the action. I give up and listen to a quiz and test myself – my favourite is Eggheads.’
Wilma Holden got a new lease of sight 20 years ago thanks to the gift of corneas from two donors. “I’d love to thank their families,” she admits. “I got a thank you myself – one family wrote anonymously.
“I had my cataracts done and found I had macular degeneration. I had injections in each eye every few weeks. I’m only having one now and then these days.”
Five years ago, Christine Green, 79, was diagnosed with stage four melanoma and given months to live. “Thanks to a brilliant consultant at Royal Preston who put me on a clinical trial I’m still going.”
She also has transverse myelitis which paralysed her from the waist down 10 years ago. Since then she’s gone from wheelchair to two sticks – and now one stick.
Christine says the clinical cancer trial brings another bonus – regular eye assessments.
“It picked up dry macular in my left eye and wet macular in my right. I’ve had 11 injections in the right eye. I also have a cataract. There’s a risk I could go blind if they operate but – with my record – I’m going for it. I’m a fighter. It’s worth a try.”
Doreen Bates, 91, has wet MD. “My central vision started going years ago. I wasn’t told anything, just come back in six months, so presumed it was OK.
“Since then it has deteriorated. My latest consultant is lovely. He held my hand and said ‘Doreen you will never be able to see properly but you will always be able to see something. You will never go blind.’
“I can only see round the edges. I try not to let it interfere at all. My husband died a couple of years ago and I moved out of my house into a flat and there was nothing to do so I went to Highfield day centre as a helper – and started coming here too. I enjoy it.”
Former Auxiliary Territorial Service driver Doris Wilkinson was diagnosed with AMD 20 years ago. She’s in her mid-90s and a member of Blind Veterans UK.
Doris recalls: “I went to my opticians because my glasses didn’t seem to do any good. I saw a young man first. I went back again, and this time saw a woman who asked me if I was driving and told me to go to the hospital – by bus or cab.
“Of course, I drove there…
“At the hospital I was told you’re going blind. That’s what was said. I got upset. I rang my daughter to come and pick my car up. I had a weep; it was such a shock.
“One good thing came of it. A man told me about the Blind Veterans charity, and I told them about my army (ATS) service and next thing I was a Blind Veteran.
“When I was 91, they took me to Sheffield to teach me to touch type and use a computer. I can’t see to write but I can type and that helps me use a computer. I also go to the centre at Llandudno. It’s lovely for a holiday.”
The last word goes to Linda Gillett who says it’s “like feeling like you’re on a ship swaying all the time. It’s a horrible sensation. If I want to see a face I have to look out of the side of my eyes.”
People over 60 are entitled to free eye tests. An eye test is recommended every two years if you are over 60, and every year if you are over 70. Examination of the macula is part of this free examination
Smokers are four times more likely to develop AMD and smoking can also make it progress faster. Exercise helps maintain normal blood pressure. Eat a healthy diet with fruit and vegetables, especially green, leafy vegetables. Monitor your vision. Report changes immediately to your optometrist.
Contact N-Vision’s Low Vision Centre on (01253) 362696 or drop in any Monday (bar bank holidays). The charity is at Bosworth Place, Squires Gate, FY4 1SH.