Leo Hynes (45) from Tuam, Co Galway, always loved doing crosswords and Sudoku puzzles and it was completing one of the latter that, one day in August 2009, he noticed the grid lines on the puzzle looking curved rather than straight. Knowing immediately that something was very wrong, he rang his optician. A visit there led to a rapid appointment with a specialist.

“It was a bit of a shock hearing the words ‘emergency case’,” the father of three says.

While Leo, a computer engineer, had virtually no vision in his left eye from birth, he had managed well with his perfect right eye – but things took a sudden turn for the worse.

“I was told it was wet age-related macular degeneration(AMD): a condition where blood vessels leak at the back of your eye. I had never heard of it.”

Leo was given a special injection straight away. Only on the market for the last few years, it has helped restore the sight of many.

He explains what he saw when he looked at the x-ray of his eyeball: “I could see the swelling there. The swelling in wet AMD pushes your eyeball out of shape, so that’s when the curve comes and vision gets blurry, because it’s not on the right focal point. The injection then pushes your eyeball back and seals off the leaking blood vessels.”

While he was advised not to play contact sports after having the treatment – difficult for a person like Leo, who had always been physically active – he was nevertheless delighted that the injection was available and worked for him. “Within a few days, the curve went and the sight came back,” he says. “It was wonderful.”

His sight did deteriorate again several times over the next few years, however, but luckily another injection restored it each time. That is until 2015.

COULDN’T SEE HIS BABY’S FACE

“I was giving our youngest daughter, Aibhian, a bottle at the time. I suddenly realised that I couldn’t see my baby’s face. The injection didn’t work this time, and another brand of injection didn’t work either.”

While he still has some vision he was forced to give up work, as driving and working with small components and screens obviously became impossible.

“Although I can’t go out on my own anymore. I can get around in familiar surroundings,” he says, “so I’m pretty OK. Steps and judging distances is hard, though. I hate concrete, because there’s no contrast. If there is a step there I won’t see it, because everything blends in together.”

Losing the ability to drive had major consequences for the family as his wife, Aisling, didn’t drive at that time.

“I had to learn very quickly,” she says, “as time was of the essence. When I went for my first lesson, I didn’t even know how to start the car. But I had extra lessons and thankfully passed my test quickly. It was a big change for us as a couple: from Leo doing all the driving, to him relying on me to bring him everywhere.”

Leo has no idea why he got AMD.

“There are two types,” he says, “dry and wet, and wet is the more serious. It generally affects people in their 50s and 60s, but I was 37 at the time. I can’t say why it happens. No one knows if it’s genetic or diet-related or what.”

The NCBI or National Council for the Blind of Ireland has been very supportive to the family, he adds. “My doctor suggested registering with them, but I didn’t think they were for someone who had some vision. I’m not blind, but the NCBI is a support organisation for those who are visually impaired also. I realise now that 90% of their clients are not totally blind, but visually impaired.”

Equipment to help him read more easily was provided, and this helps him greatly in daily life.

“They gave me all the different magnifiers and lights to help me. Part of the problem with my eyesight is that everything is vibrating. I think it’s like having a migraine, but you don’t have a headache. It’s frustrating, because it means that I can’t read or watch TV for too long.”

LOVES TANDEM CYCLING NOW

In spite of all the challenges that sight loss has presented Leo tries to remain positive. “Life doesn’t stop when your sight deteriorates,” he says. “You learn to live with it and find different ways of doing things.”

Leo, who was involved in sport at triathlon level before developing AMD, has now joined a Galway-based activity group for the visually impaired and really enjoys tandem cycling.

“I loved it from the first time I tried it, so for the last three or four months I’ve been going out with my pilot every second Sunday or so. About eight of us on tandems do 20km or 30km, take a break for tea and a chat then cycle back.

“The volunteer pilots cycle in front and we sit in the back. I love going. It’s great, it clears your head as well as being good exercise – and you’re out and about meeting people too.”

REMEMBERING THE SHOCK

Although Leo has adopted a very positive attitude, the discovery of his sight loss was a massive shock. Aisling remembers when the injections stopped working in 2015. “We thought they’d keep working indefinitely, so it was a huge blow. We didn’t see it coming at all,” she says.

“We just thought: ‘OK, we’ll get you in for your injection tomorrow.’ But it wasn’t.”

Aisling agrees that NCBI support has been valuable. “Phone counselling was available for Leo, so he didn’t have to leave the house for it, and he has found the support group meetings great too. He is still in contact with some of the people he met there, although most people with wet AMD tend to be in their late 70s. Leo was very young to get it.”

Avoiding social isolation is very important, she says. “You have to get out of the house. Leo is great for motivating other people who have the condition, and he is very positive. The way we look at it, is that it could be a lot worse.”

DADDY’S EYES DON’T WORK ANYMORE

While the couple have three daughters – Lauren (seven), Fiadh (four) and Aibhian (two) – it is their eldest who has found her dad’s sight loss hardest to deal with, her mum says.

“The two small ones don’t remember Leo going to work, but she does. He used to bring her for a spin in the van and out cycling. They were such big treats for her, so it’s a big change for her as well.

We explained that Daddy’s eyes don’t work anymore, but that the only thing he definitely can’t do is drive. With everything else, we can find different ways of doing it.”

Aisling says that it’s a matter of getting on with life. “You just get on with it because of the kids. We don’t want them to see us sad. This is going to be part of our life from now on. The kids know Daddy is not going to get better, but we try to make it OK for them. Leo missing seeing family milestones – holy communions and so on – will be difficult, of course, but we try not to dwell on that.”

Leo agrees: “You have to get on with it. Life doesn’t stop when you experience sight loss. It just slows down and you just need to find ways around things. I’ve got a lot of useful tips for doing things differently from others I’ve met who are visually impaired.”

Talking to others in the same situation is key, he believes. “It makes you realise that you’re not alone and that there are others in the same boat. You can feel isolated and say ‘Why me?’ and ‘What am I going to do?’ and so on, but talking about it helps.”

He stresses the importance of getting out socially if you are visually impaired. “I know one older person who is getting out of the house a lot more by using a child’s pushchair, for example. She has the comfort of knowing that she won’t fall over anything, as the pushchair is in front of her and she can put her shopping into it also, so there are a lot of things you can do to help yourself. You have to focus on that.”

SEEK MEDICAL ADVICE immediately

Leo advises any reader who notices changes in their eyesight to seek professional advice immediately. “If you think something is wrong with your eyesight – like blurriness or seeing curved lines – contact your optician straight away. They will then refer you on to a specialist if necessary. If something is wrong, then you can get the help you need quickly.” CL

>> About AMD

Macular degeneration occurs when the macula (the part of the eye responsible for central vision) is unable to function as effectively as it used to. It doesn’t affect peripheral vision, so it doesn’t cause complete blindness. There are two types of age-related macular degeneration (AMD): dry and wet. Dry AMD affects the eyes gradually, but wet AMD develops very quickly and is more serious than dry macular degeneration. Around 90% of cases are dry AMD.

Treatment

The newest type of treatment for wet AMD is Anti-VEFG medication. These injections work by blocking the chemical that produces the new blood vessels caused by wet AMD.

(Source: HSE).

Get support

For details of supports available from the National Council for the Blind of Ireland see www.ncbi.ie and www.hse.ie .