Meet people living with aphasia

Janet Sutton

David and I knew the importance of communication - after all we had been teachers for over thirty years. However, until David's severe stroke in July 2002, we didn't know how difficult life could be without speech. David has aphasia (or dysphasia) a communication disability which occurs after the communication centres of the brain are damaged.

After six months in hospital, his physical ability had improved and we thought the worst was over. But, when David came home it was devastating to realise how our lives had to change as we now communicated by expression, mime, diagrams and pictures.

Early on I realised our roles and those of our three children had to change. We no longer had our income and our life style had to alter. Now I was the only person who could drive, write letters, deal with bills and mortgages and I also had to deal with problems such as David's recurring fits. But gradually, I helped him form and say words and to read again.

We started to visit 'TALK' a charity which runs weekly meetings to enable people with aphasia to practise their communication skills. I was keen to support other people so after volunteering at Guildford I am now leader of the Walton group.

Then we visited Connect where we received much needed support and encouragement (three of our remaining parents had died within a year and money was a problem).  It was really helpful to attend events for people with aphasia and carers where we met others in the same situation. Now David and I volunteer at these events by sharing our experiences and giving tips and advice for living with aphasia.  Connect publications such as the “Stroke and Aphasia Handbook”, “Better conversations” and “Caring and Coping” have been invaluable. There is little information to help people with aphasia and carers so it's a real comfort to have something to refer to and now I have a resource to help with my work running groups.

David continues to improve every week and he remains cheerful and positive. I have made great strides too - I have now completed my MA with a dissertation about Aphasia and recently received an award for voluntary support.

Surprisingly, 250,000 people live with aphasia in the UK but it is still not a word most people are familiar with.  I hope through my voluntary work that I can give families the support they need and ultimately that aphasia becomes a word we all recognise.

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