Rare form of macular disease sufferers talk about hallucinations

Nancie Swan
Nancie Swan
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Andrew Turnbull glances across his living room with a faraway look in his eyes.

“I can see a great big brown eye and the eyelashes all round – I can see it as clear as a bell,” he says. “Wait a minute . . .”

Artwork by Cecil Riley

Artwork by Cecil Riley

He pauses thoughtfully and clicks his fingers: “Now I can’t.”

The 99-year-old retired bank manager developed vivid hallucinations as a result of the eye condition dry macular disease, and has learned to control them, summoning them up and dismissing them at will.

He is one of more than half a million people in the UK to suffer from age-related macular disease, and one of a smaller subset of those who develop the hallucinations referred to as Charles Bonnet Syndrome, named after the Swiss scientist who first described the condition in 1760.

It is a relief for Andrew to be in control of his visions. When they first began he had no idea what they were, and was scared to go to sleep at night in case they appeared.

He was first diagnosed with macular disease about 15 years ago, after noticing that his sight was becoming distorted. “I noticed that the girls’ legs along George Street were all squint,” he chuckles, “and the electric pylons were too, and the cars were all in the wrong place. It was very sudden. It took quite a little while to get diagnosed because there wasn’t so much said about macular disease then – you just realise that your sight is failing.”

As his vision deteriorated, so did his spirits. He says: “I was so depressed and just about off my head in the first six months. I phoned up the widow of a minister who I knew had it, and she said if I thought anyone was going to sit and hold my hand I was mistaken, but you’ve got to ask for help and you can just get on and do a lot of things.”

It was the motivation he needed to get up and help himself, and despite being registered blind, with only peripheral vision, he is now active and independent once more, asking passers-by to guide him across the road and supermarket staff to help with his shopping.

Just as worrying as the loss of vision in those early months was the arrival of the hallucinations.

“I was frightened to go to bed at night,” he says. “As soon as I put my head on the pillow there were forks of lightning, and after two or three months there were large cumulus clouds.”

He was too alarmed to tell anybody about the hallucinations, but having found his way to the Edinburgh branch of the Macular Disease Society, he was lucky enough to go to a talk by an American expert on the subject, but not everything he had to say was reassuring. It turned out that Andrew wasn’t the only person to keep his hallucinations secret for fear that people might think he was going mad.

Andrew says: “There was a woman from Peebles there who said that there were little men climbing up over the edge of her cup, and he said straight away that it was these hallucinations.

“He was very quick to tell us certain things – you don’t rush and tell your doctor because he may or may not know what it is. And you don’t tell anyone outside your immediate family because they might think you should be locked up. One lady that I met at the golf club saw wild horses coming down the street, and another women brought her husband to see me because when he woke up in the morning he saw men’s faces on the ceiling with their tongues hanging out.”

The American visitor did at least have some tips for controlling the visions, by changing your surroundings or lighting.

“He said get up and make some tea – and that works – but the hallucinations will come back again, and you just have to learn to live with them and learn to control them and pay no attention to them.

“I learned to go to bed and tell myself I wasn’t going to see them and they gradually went away. I’ve had various changes in the hallucinations since, but I’ve learned to control it and I can whistle up the brown eye just at will.”

Nancie Swan, 87, a retired teacher who lives in Morningside, does not have the ability to control her hallucinations, but when they first struck, she was at least aware that they were a symptom of her macular disease. Now they appear two or three times a day, for six or seven seconds at a time, before fading.

She says: “In moments of relaxation and certainly when I close my eyes, I get this vague purpley glow colour, and then there’s a grotesque face, as if drawn by pen and ink, that appears.

“It’s usually a woman with nubbly features and large teeth that stick out and very often wearing a bonnet. The features change while I’m looking at them but I don’t feel threatened by it.”

She was diagnosed with macular disease 17 years ago after her vision began to distort and, like Andrew, was distraught by the diagnosis.

“I have dry macular and the opthalmologist can do no more for you. They’re so busy they don’t have time to think, ‘This poor woman is absolutely devastated, she won’t be able to read a book or see her grandchildren’s faces’.”

Like Andrew, her central vision is obliterated, but because her peripheral vision remains, she says she has overheard people speculating that she is not as blind as she claims to be.

But the effect of her sight loss is huge. She had to give up her hobbies of painting and calligraphy, can’t see people’s faces, and says: “You can get around after a fashion but you can’t read notices. You can’t see the food while you’re eating – it’s so maddening, you realise that so much of the pleasure you get from eating is from seeing your food.”

She, too, struggled to find information about macular disease when first diagnosed, but after she joined the Edinburgh branch of the Macular Disease Society, went to regular meetings, which she has found tremendously supportive.

Chairman of the group, George Kay, who is hosting a coffee morning to offer support to existing and non-members, said: “Most people think they’re the only one that’s got it, and when they come to a group and there are 50, 60 people all gathered they realise they’re not the only one. They make friendships with each other and tell each other little tips they’ve got – and they really draw strength from one another.”

• The coffee morning will be in the undercroft of St Andrew’s and St George’s West Church in George Street, from 10am to 12.30pm on Saturday. For more information on the Macular Disease Society, see www. maculardisease.org.

• The group will also be at the Sight Village event at the Hilton hotel in Grosvenor Street on April 24, from 10am to 3.30pm.

• For more information on the events or the group, call Mr Kay on 0131-664 3460.

UNDERNEATH THE BONNET

CHARLES Bonnet (pronounced Bonnay) Syndrome is a side effect experienced by some people with sight loss as a result of macular disease.

Macular disease results in the loss of central vision, and as the normal flood of electrical signals passing from the eye to the brain is reduced, the idle visual brain cells begin to fire spontaneously, resulting in hallucinations.

Some people see colours, some see grids and latticework, others see disembodied faces, landscaped gardens, or even processions of miniature costumed figures wearing hats.

The hallucinations can sometimes be deliberately disrupted by rapidly moving your eyes from one side to the other, by switching room lights on or off, or just getting up and doing something else. This does not remove them permanently, but they do sometimes become less regular over time.

Chief executive of the Macular Disease Society, Helen Jackman, above, says: “We think that for those people whose sight might not be that badly affected, it may be one in ten that experience Charles Bonnet Syndrome, but it’s up to about 60 per cent of people who’ve got severe sight loss. But quite often people may be a bit afraid of talking about it or telling anybody that they’ve got it. There’s a fear that they may have mental health problems, so we think that the incidence might be higher.

“When people start to experience visual hallucinations it can be quite frightening, and they quite often don’t know that it’s a common phenomenon and a perfectly normal side effect of sight loss.”

Among those afflicted is artist Cecil Riley, from Cornwall, who has taken to painting some of his visions, which include eyes and gargoyle faces.

The Macular Disease Society runs a helpline on 0845 241 2041, and its website is www.maculardisease.org.