Stroke survivor Barbara Parr: ‘I knew what I wanted to say but the words just wouldn’t come out’

Barbara and her husband David
Barbara and her husband David
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  • Richhill stroke survivor Barbara Parr, 52, is one of the thousands of people in Northern Ireland living with communication difficulties after a stroke. 
She reveals why she is backing the Lost for Words campaign

Barbara had her stroke in September 2014 when she became suddenly ill while visiting her mother’s house. Barbara didn’t realise she was having a stroke – but her friend Tara, a nurse, happened to be with her and quickly realised something was wrong and took her to Craigavon Area Hospital.

Barbara had a second stroke in the ward that evening and after her second stroke – she lost the ability to talk.

Barbara said: “I was in hospital for about eight weeks and then I got to come home. After my stroke my right side was paralysed and I lost the ability to talk. I knew what I wanted to say but the words just wouldn’t come out– it was terrifying.

‘‘I received help from the Community Stroke Team which was excellent but there just wasn’t enough of it! Support has to be continuous – it cannot stop. There is always room for improvement. I felt that I was left to my own devices a lot after the stroke – my husband David and I, just wanted information about help that was out there.’’

Barbara added:“After the stroke “ or “Before the stroke” are two of the most commonly used phrases in our home, not just by me but all the family members.

‘‘Our worlds were turned upside down overnight - going from busy independent wife / mother / business person to the now familiar recovery process was and is an arduous journey. Fatigue , epilepsy , aphasia and even mental health issues were my new normal . Aphasia is probably my biggest remaining challenge to this day, 
but thankfully there is light at the end of the tunnel.’’

Barbara joined the Stroke Association’s Newry Communication Group this year.

‘‘It is run by Catherine – a speech and language Therapist. She really helped to boost my confidence. I really enjoyed the speech classes – there were only about four or five of us in the group and we all had aphasia. It was lovely to be around other people who had been through similar experiences as me. They will know when I am 
struggling and give me the patience to find the words.’’

Barbara added: ‘‘My words feel like they are locked away. It takes a lot of hard thinking to find the right words. But, it does not affect my intelligence. I understand everything around me. The Stroke Association helped me find my words again, and gave me back my confidence.”

The Stroke Association’s Lost for Words campaign aims to raise awareness of the challenges stroke survivors with communication difficulties can face, and help and support available.

Catherine Lowry, speech and language therapist at the Stroke Association said: “After a stroke around one in three people like Barbara have difficulty communicating. This can be both terrifying and isolating. But with the right help and support many stroke survivors are able to find new ways to 
communicate and in turn can rebuild their lives once more”.

The Stroke Association’s SLT Communication Plus programme aims to increase participants’ knowledge and awareness of stroke and associated communication difficulties post stroke i.e. aphasia. The programme supports participants in improving their communication skills for everyday living.

It also explores the changes and impacts of living with a long term communication difficulty and encourages participants to consider options and goals for the future. The Newry SLT Communication Plus programme is partially funded by the Southern Health and Social Care Trust.

More than 350,000 people in the UK have aphasia, a communication disability which can be caused by stroke. The Stroke Association is urging people to show their support for stroke survivors who are lost for words and make a donation. For more information, visit www.stroke.org.uk/lostforwords.

For more information on the Stroke Associations SLT Communication Plus programme, contact the Northern Ireland team on ni@stroke.org.uk or 
call 028 9050 8020.