Man with rare disease sees cartoon vision, can’t recognize grandchild
A man with a rare disease that severely affects his vision has opened up about his daily struggle with hallucinations and his inability to recognize faces.
Graham Varley suffered several strokes in 2017, leading to massive loss of vision and the development of a condition known as Charles Bonnet syndrome, according to Leeds Live.
This sometimes causes the 56-year-old to see things that are not real, as well as problems with identifying people.
Graham, of Chapel Allerton, said: “What has happened to me is so rare and so strange and it has been really horrible to deal with. I wouldn’t wish it on anyone. But four years later I feel like to have started to live again. ”
A bakery manager at the time, Graham started having a headache one day about four years ago while at work, but continued as usual.
His colleagues noticed that something was wrong – when he collapsed he was immediately taken to hospital.
The blood had been cut from the main artery to his brain, leaving him with hemianopsia on the right side – the loss of half of your visual field.
By Christmas Day in 2017, most of Graham’s sight was gone.
Graham said: âAfter my shots I not only had to relearn everything like reading and writing, and even learning to dress, but I also lost the majority of my vision – and on Christmas Day. everyday.
âThe only sight I have left is a little bit to the top right of my eyes – I can’t focus and have no perception of 3D, so everything I can see looks like a cartoon.
âOne of the most disturbing things caused by my loss of sight is Charles Bonnet syndrome, which makes me see things that are not there.
“Sometimes it can be things of a different color than they are, like pink grass or a purple tree, but other times it can make me hallucinate which can be quite enough. scary – like a car coming towards me, or quite often, huge cobwebs.
âI also now have something called prosopagnosia, which means I can’t recognize people’s faces. I have a two year old granddaughter and because I never knew what she really looks like, my condition makes her look like me every time I see her.
âMy doctor tells me that I still have two blood clots in my brain that are dormant, but they can move and my eyesight is changing all the time because the signals are not going to the right place.
âSo some days I look at Griffin, my guide dog, and with the partial vision I have, he looks like a cartoon dog. “
After Graham left the hospital, he spent a year waiting for help and had to rely on family, friends and caregivers.
He was essentially assigned to several specialists and was eventually partnered with guide dog Griffin in November 2020.
He has since fallen in love with the black Labrador Griffin, who supports him in his daily life after being affected by Guide Dogs UK.
âOddly enough, I didn’t like a black Labrador, but when Griffin came on the scene, within 24 hours, I was wowed!â Graham said.
âI’ve had dogs my whole life, but I’ve never trusted one like I do now. We go out every day together – he has opened up my life so much. The farthest I went was all the way to the end of my driveway and back, but now we’re walking three or four miles a day.
âWith my Charles Bonnet Syndrome, Griffin helps me know what’s real and what isn’t. If I see something in front of me but Griffin keeps walking, I know it’s a hallucination.
âYesterday, with Griffin by my side, it was the first time I went to the supermarket alone in four years. A few weeks ago, it was the first time since my stroke that I went to the barbers. I feel like I’ve regained my confidence – I haven’t done anything I’m doing now, without Griffin.
“I even took him to the pub and everyone must know him – he’s going to say hello to everyone and now he’s a local celebrity!”
“I have never trusted anyone like Griffin – he is truly amazing and I am so grateful to the guide dogs and the team for their support.”
Graham lives with his wife Mandy and is also in the care of a caregiver.
He has four children and five grandchildren – he teaches his 12-year-old granddaughter how to cook to follow in his footsteps.
He loves going to the beach with Griffin and hopes to move to the seaside in Filey next year.