Say Aphasia: building a community for those overlooked

Aphasia isn’t a well known condition and therefore many living with the condition can feel alone. It is usually caused by damage to the left side of the brain, which is responsible for understanding and communicating language. Colin, CEO of Say Aphasia, shares his story with us.

Like Bruce Willis, Colin had to say goodbye to a successful career after he was diagnosed with aphasia. At first, while in hospital, he could only groan the words yes and no, and mutter some gibberish. Recovering from a stroke had made him tired and foggy headed, and in these early stages, Colin and his family did not fully understand what was happening to him.

Feeling isolated

Colin had damage to the brain which causes the condition aphasia. He knew he’d had a stroke, which he could understand. But the concept of aphasia was new, and so the next few days were filled with confusion. On top of that, there was this newly acquired communication barrier.

As Colin could no longer speak, read or write, he had to leave his career as Director of an engineering company. But Colin has come a long way since his stroke in 2013. While in hospital he received a few sessions of speech and language therapy and saw immediate progress. With progress in sight, he continued with private sessions at home which was the best thing for his progression. Aphasia can be very severe. To give an idea, Colin was relearning how to associate the correct words with illustrations of household items, as well as writing single words, as ‘simple’ as ‘dog’. These were huge achievements. It was very much back to basics, and tasks weren’t dissimilar to what you would expect to learn in your first year of school. Progress continued but at a slow rate, and Colin soon saw how this condition was affecting those around him. Some friends didn’t visit as often. Some were embarrassed as they didn’t know how to talk to him, and some people gave up altogether.

Raising awareness

Another big input into Colin’s recovery was attending a local support group for people with aphasia. Unfortunately the charity had to close, and so Colin, being the determined man he is, took it upon himself to set up a new charity to support people with aphasia. His biggest drive to create this charity was learning that support for aphasia was sparse. He started with one local drop-in group which soon expanded into 12 groups across the UK. The rapid growth was due to the fact that over 350,000 people in the UK live with aphasia, and there was a lack of support groups. It also became apparent that this condition wasn’t widely spoken about, nor understood, and so support is hard to come by compared to stroke support.

The lack of awareness and understanding of aphasia was most likely the biggest contribution to this isolation from friends and family. That is why raising awareness and understanding is so important to his charity, Say Aphasia. Thankfully, over the years, with continued practise, Colin’s communication continued to improve and friends and family had more understanding of the condition.

The charity Say Aphasia not only offers support, but also aims to raise awareness and understanding of all types of aphasia. There are different types, and severities, which affect how fluent someone can communicate, as well as how they are able to communicate. The extremities in which aphasia affects someone’s brain is so diverse, that some people will hardly be able to speak, while others may manage to write or draw rather than speak. Understandably, a lot of people feel extremely isolated, depressed and lonely; and so Say Aphasia takes pride in being able to offer support from a relatable perspective, as it is run by people with aphasia. Colin says he now feels very lucky because after years of continuous improvement, he can now have conversations. He explains, “I cannot read and write nearly as well as before, but thankfully technology has allowed me to write emails and text messages using voice recognition on my smart phone”.

Finding purpose

He also says that “in the first few years of living with aphasia, I felt bored and frustrated. Setting up my own charity gave me a purpose again, and new goals to achieve. It is very saddening to hear of people struggling to adapt to their new way of life with aphasia, without much support. So I focus on bringing positivity and offering support as much as possible. I hope that this charity will become that life line for others too.”

Say Aphasia offer the opportunity for people with aphasia to run their own drop in group, to give them a sense of purpose again and to help increase their quality of life.

“I am lucky to have family who have helped me adapt to this new way of life, and their positive outlook on life has helped me to enjoy life, despite having aphasia.”

To learn more about the Say Aphasia charity visit their website.

There are also organisations to help people with aphasia, and for those wanting to learn more about the condition, Aphasia Alliance is a great place to start.

This month is Aphasia awareness month, find out more information here.

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