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Living with Charles Bonnet Syndrome

My name is Roger Cole and I am the presenter of the Connect Radio Pure 70s and Pure 80s music shows for the Royal National Institute of Blind People (RNIB). This
is my journey finding out about, battling and living with Charles Bonnet Syndrome (CBS).

I was diagnosed with Retinitis Pigmentosa (RP) in the mid-1990s, a condition that saw my vision gradually deteriorating.

With regular visits to Moorfields Eye Hospital in London, the condition was regularly monitored and I slowly came to terms with the sight loss.

Visual anomalies

During the early part of 2010, I also noticed that, along with large areas of deterioration, there were pockets of visual anomalies such as flashes, patterns, shapes and what I perceived to be hallucinations. Sometimes these could just be simple isolated areas of patterns, but now and again these could extend to full-blown and severe panoramic types of hallucinations. In fact, on several occasions, these hallucinations have woken me up at night. On these occasions it’s been dark, but, it actually seemed more like daytime with much more recognisable shapes and colours.

At times this could feel quite disturbing and prompted the odd thought that I was losing – for want of a better word – my marbles. It was, I must admit an extremely worrying time. But during my next regular appointment at Moorfields, I brought up these issues and was eventually told after many tests, questions and specialists that I had CBS. Just knowing that it is a recognised condition eased my worries a little.

Moving forward and with this newfound knowledge, my life carried on as usual, as well as coming to terms of the day to day and week to week mindset of dealing with sight loss.

I continued to create and produce my radio shows for RNIB and took up a new sport – golf! This newfound sport keeps my mind focused and was a welcome distraction. In fact, playing in blind golf competitions and tournaments has given me a new outlook on life; it gets me out in the fresh air, improves my all-round fitness and is a great way of socialising and getting to know other blind sportspeople.

Impact on friends and family

Of course, it’s not just the person who has CBS that’s affected, without a doubt it also has an impact on family and friends. For example, my wife would sometimes get very upset listening to my descriptions and fears during these severe episodes of visual disturbances. Especially during that time before the first diagnosis; for a while this had a severe impact on our life.

These days, however, I find myself more focussed and motivated to battle both CBS and RP. Meeting other people who deal with this severe condition has also been a major inspiration to me.

Going forward

We are all battling for a sense of normality in our lives and, of course, a better quality of life. Awareness of this eye condition is the major battle ahead. And with organisations like Thomas Pocklington Trust and RNIB bringing this to the public eye, the future for those with CBS is positive.

Written by Roger Cole

London Vision runs regular telephone support sessions for people living with CBS, find out more here.

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