Deborah Fahey knew what she wanted to say, but she couldn’t get the words out.
She struggled to walk, was unable to move her right hand and damage to the left side of her brain caused aphasia – difficulties with language and speech.
“I was talking about trash, but I thought I was talking normal,” she recalls.
“My brain and my mouth were doing different things.”
“It was like being a child,” she says, and you have to learn to talk again.
Deborah is one of around 360,000 people in the UK who suffer from aphasia, yet it is believed that nearly 85 per cent of people have never heard of this complex condition.
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Deborah, 50, from Leeds, spent three weeks at Leeds General Hospital after suffering a stroke in April 2016.
For six months after that, she stayed at Chapel Allerton Hospital, where she was a speech and language support worker.
When she got home, she was then referred to the Wakefield-based aphasia support charity, Speak With IT, which has helped her ever since.
In 2017, Deborah began noticing improvements, describing how “my brain and my mouth were together — hallelujah.”
After years of support from the charity, including through computer therapy programs, an aphasia café, and conversational techniques, she is now constantly improving.
Deborah says, “Even though my mind was working and I knew what I wanted to say, I couldn’t get the words out.
“I had to start all over again, with reading and talking.
“I was referred by the NHS to speak with the IT department and they assessed and matched me with a volunteer, who understood my frustrations and worked with me on my communication goals.
“With their support and the apps and software they helped me navigate, I was able to work on my speech and improve my speaking skills.
“It took me about three years to get to the level I am at now, but with the support Speak With IT continues to provide, and my own motivation, I’m constantly improving.”
Speak With IT focuses on improving people’s speech and language skills and confidence, as well as enhancing well-being and reducing feelings of isolation.
Currently funded by The National Lottery, it helps those with aphasia work on key communication goals with the support of speech-language pathologists.
The charity matches patients with a trained volunteer who works with them on an individual basis, using a variety of computer therapy programs, and supported conversation techniques.
Although the condition made headlines recently when Bruce Willis announced he was stepping back from acting due to aphasia, there is little understanding of how it affects people, and the support available can vary widely depending on the location.
That’s why, in June, Aphasia Awareness Month, Talk To Us highlights the challenges that many people with aphasia face when it comes to getting help and support for their recovery and has set sights on expansion.
CEO James Major says: “Aphasia is a very complex communication and language disorder that requires ongoing professional support.
“The main cause of incarceration is stroke, with a third of the 100,000 stroke survivors affected.
“When the NHS provision ends, some people can be left completely without support, with limited or no access to vital help.
“We want to end this zip code lottery by expanding our services across Yorkshire and beyond, to give everyone with aphasia the opportunity to access vital language and communication services.”
The charity operates primarily across West, South and parts of North Yorkshire, offering one-to-one home visits and online sessions, as well as running a number of aphasia cafés in Leeds, Wakefield and Barnsley that give people a chance to meet and share experiences.
James is keen to expand Speak With IT to East Yorkshire and the Midlands as well – and there is a name change in the pipeline to help clarify the charity’s theme.
“June is Aphasia Awareness Month, so it’s an opportunity to highlight aphasia,” James says.
“It is estimated that there are about 85 percent of people who do not know what aphasia is and we think this needs to change.
“We are working to raise awareness of aphasia but also to raise awareness of the charity.”
There’s also a charity bowling competition on July 3 at the Broad Oak Bowling Club in Huddersfield.
For Deborah, her stroke recovery is a long journey, but over time, her ability to speak, walk and be independent improves.
“It’s a long road to recovery, but it’s possible with the right support,” she says.
For more information about the charity, visit www.speakwithit.org
People with aphasia may have difficulty reading, speaking, writing or writing, listening and understanding. The NHS explains: “It is often categorized as ‘expressive’ or ‘kissing’, depending on whether there are difficulties understanding or expressing the language, or both.
Symptoms can range widely from mixing up a few words to difficulty calling all forms of communication. Some people don’t realize that their words don’t make sense and get frustrated when others don’t understand them.”
Aphasia is caused by damage to the parts of the brain that produce and understand language, due to a stroke, severe head injury, brain tumor, or progressive neurological conditions including dementia.