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Leo Clarke and Trevor Walker. Deadlinepix TK1504

Language and the ability to communicate through the written word are fundamentals through which human beings have ascended the animal kingdom. They are key to almost everything we do, the way we express ourselves and interact with others.

But imagine waking up one morning to discover you were literally lost for words. No matter how much you wanted to say something, the sentence would not come out. Imagine also losing the ability to read and write – numbers and letters that once had coherent meaning became nothing but a jumble of indecipherable symbols.

Nine years ago this became a reality for Sutton resident Leo Clarke.

Leo, a successful architect, woke up feeling slightly odd, but unable to determine what, if anything, was wrong. He got out of bed and headed to his dental appointment.

“When I got into the operating room I found that I was not able to talk to the dentist. I tried but nothing came out,” says Leo.

“When I went down to reception to pay, I couldn’t write the cheque out. They printed one for me but I didn’t know what my signature was so I just scribbled it.” Leo says he later found out the bank honoured the cheque, despite the illegible signature, “It just shows how much they check these things,” he says.

He is now able to laugh about his condition, but sitting at his desk in Tower Hamlets nine years ago, head in his hands, desperately trying to work out what was wrong, he was closer to tears.

Leo had in fact suffered a stroke, which in turn led to a little-known condition called aphasia that affects up to 250,000 people in the UK.

Aphasia leaves the side of the brain responsible for communication unable to function properly and thus, in the most severe cases, reduces highly intelligent people’s communication skills to that of a baby.

Cheam resident Trevor Walker went through a similar experience. A TV and film cameraman, he had been suffering from severe headaches for some time, but thought nothing of it until one day his colleagues noticed his speech was slurred.

He says: “The following morning I went to the doctor and started to tell him what was happening, but I didn’t really know how to.” “The aphasia had already started and I was talking gobbledy gook.” Trevor’s doctor’s reaction was surprisingly unsympathetic. He complained that he had a lot of patients to get through and that his time was being wasted, so Trevor left. Within minutes Trevor had collapsed with a massive stroke and spent the next six months in hospital and a further three in a rehabilitation centre.

He says: “When I left my hospital bed and my left arm and leg were semi-paralysed I realised I would not be able to continue as a cameraman. It took me about 10 years to even pick up a camera, partly because of my disability but mainly because it reminded me of my career, which was over.” Trevor and Leo’s speech has significantly improved since they suffered their strokes. Both shared the same speech therapist at St Helier Hospital and used techniques such as reading a newspaper aloud to improve their ability to speak, read and write.

However, the severity of the condition varies widely and while Leo can talk at length, for Trevor it is more of a struggle.

“Before coming here I knew I would have to rest this morning because otherwise I would make no sense in the interview. Right now I am at my peak but this evening I will be very tired,” Trevor says.

Aphasia sufferers are commonly unable to pull a word from their head. Or they will say a different, but sometimes related, word than intended – for instance cup instead of plate or sugar instead of tea.

When talking, Trevor frequently traces the letters of words he wants to say on the arm of the chair with his fingertips to help him remember and say what he intends.

Some people have described the condition as like being in a foreign country, where you can hear people speaking but not understand what they are saying. For other sufferers, the power of speech is lost forever and they must use hand signs, or even drawings to convey messages and make people understand them.

For these reasons it can be a very isolating illness. Some sufferers begin to shun the outside world because they do not feel part of it because of their inability to communicate.

But this is not the case for sufferers in Sutton. Ten years ago, at the suggestion of his therapist, Trevor founded Smash – Sutton and Merton Aphasia Self Help Group.

Leo joined two years later and they are now the secretary and chairman respectively of the 12-strong group.

It is part-funded by Sutton Council and receives support from Speakability, a national charity, and Connect, a London-based charity for people with communication disabilities, of which Leo is a trustee.

“We meet for two hours every two weeks on a Monday at the SCILL centre in Sutton. We mostly just talk to each other at the meetings, because that’s the main purpose of coming together. There are no interruptions and we always have group discussions,” says Leo.

“We can meet and let people talk at their own pace. We don’t cut across people or try to think what they are saying and say it for them.” Leo and Trevor tell me this can be a common reaction from people who do not understand aphasia. They will try to cut off sentences and finish them themselves.

“But most aphasic people like to get through a sentence and it’s important to give them time to do that,” says Leo.

They used to allow carers to attend their meetings but have since decided to exclude them because they found it difficult to get things done for themselves.

“If you’re chatting to a carer for an hour-and-a-half of a two-hour meeting it’s pointless being there,” says Trevor.

The group recently celebrated its 10th anniversary with a party attended by Mayor of Sutton Councillor Robert Landeryou and has this year set up its own website. It has hits from places as far afield as Canada and Mauritius, and Leo and Trevor hope it will help promote greater awareness and understanding of their condition while giving hope to other sufferers who may feel isolated.

Leo says: “The purpose of our group is to help members stand on their own two feet and find ways of living with the disability without having to depend on anyone else. People find this a great help – I know I did in the beginning and it actually transformed my attitude to life.” Go to the Smash website at www.smash-uk.org.

11:38am Monday 17th November 2003

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