“It was back in 2016 or 2017. I was getting a pair of sunglasses, they asked me in and within five minutes they’d told me there was bleeding at the back of my left eye. Within the hour I was at Kidderminster hospital.

I had never heard of macular degeneration before, it was a bit of a shock. I convinced myself that I wouldn’t lose my sight. But around Easter everything went blurry and I was registered part blind. I remember sitting there not understanding a word that was being said to me. I just shut down, thinking what happens now?

The Charles Bonnet really set me off too. I had it quite bad. I was with my father-in-law watching boxing on TV. There were two blokes getting in the ring, which is fine, but then I saw two more getting in with raincoats on. I was thinking what’s going on here?

I found out about the Macular Society and started going to the local group meetings on the phone. They helped me to see that I wasn’t on my own, we were able to help each other, sharing tips and ideas.

At the second meeting I just broke down, I couldn’t stop crying. The group leader referred me for counselling. Before the counselling I was in dark state, I was so close to a nervous breakdown, so the help came at a vital time. Without a doubt it helped bring my confidence back. She understood where I was and what was wrong with me, because before this I didn’t know.

I’m so thankful for all the help I’ve received, especially being able to understand my Charles Bonnet Syndrome, that was crucial for me.”

Donations made in loving memory help fund services like the counselling programme that enabled Kenneth, and many others like him, to feel less alone and to make sense of their diagnosis.

For information on Charles Bonnet Syndrome and the visual hallucinations that can be caused by sight loss please contact our Advice and Information Service on 0300 3030 111 or by emailing help@macularsociety.org

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Charles Bonnet syndrome (CBS) link arrow

Up to half of all people with sight loss caused by macular degeneration may see the visual hallucinations known as Charles Bonnet syndrome (CBS). Hallucinations caused by Charles Bonnet syndrome can be funny, distracting or even frightening, but they are very normal and not a sign of dementia or mental illness.

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There are many ways you can give in memory to help beat macular disease – by phone, post or online.