Lurgan stroke survivor adds their voice to Lost for Words campaign

Lurgan stroke survivor Paul McLean, 41 is one of the thousands of people living with communication difficulties after a stroke.

Paul has aphasia – a common communication difficulty after stroke. Aphasia can affect a person's ability to understand, speak, read, write and use numbers, however it doesn't affect a person's intelligence. Paul had his stroke in June 2016 aged just 40. Paul had a number of known risk factors – including dilated cardiomyopathy, Atrial Fibrillation and high blood pressure – but was on medication for these.

His stroke happened on a Saturday morning while he was at home with his wife Suzanne. Paul was going to show his wife Suzanne a video of Casey Neistat who is a filmmaker and storyteller on Youtube which Paul enjoys watching. Paul first began to notice something was wrong when he couldn’t lift his right hand to play the video. Suzanne noticed Paul’s speech was slurred and she did the FAST test asking Paul to smile and lift his arms. Suzanne spotted the signs of a stroke and immediately called an ambulance.

Paul said: said: “It was a really bizarre situation and a series of fortunate coincidences probably saved my life. For one, Suzanne wasn’t meant to be there. She had changed her work plans at the last minute and stayed home with me that morning. If she hadn’t been there and gotten help so quickly I would probably be dead”.

“It seemed like just minutes before the paramedic arrived. Luckily, the rapid response car had been nearby. Almost immediately he called for backup and soon there were three ambulances, the fire brigade and police at the house. I’m so grateful to all the amazing people who came to help me”.

The paramedics said that Paul was extremely ill and despite the fact that Paul’s stroke occurred on a Saturday, the paramedics decided to take Paul directly to the Royal Victoria Hospital for a brain scan, instead of going to the stroke unit at nearby Craigavon. The medical staff at RVH thought he would benefit from a revolutionary procedure called Thrombectomy – which involves inserting a small tool into the brain to remove the blood clot which caused the stroke. The procedure usually only takes place Monday – Friday 9am – 5pm but another lucky coincidence meant he was able to avail of this treatment on a Saturday. Paul says this was vital to saving his life:

“When I arrived in Belfast I was scanned and they discovered my stroke was caused by a massive blood clot in my brain. The Consultant who specialises in the clot removal treatment just happened to be in the hospital catching up on some paperwork. The nurses ran down to his office and asked him if he could scrub in to do the procedure and he said yes! It was another fortunate coincidence that he was there on a Saturday. Any other Saturday and I might not have been able to get the surgery I needed”

The main side effects of Paul’s stroke are extreme fatigue and difficulties with communication.

Paul says: “At first I couldn’t really speak at all. I had a few words and could say my name but that was about it. It was really scary. I was only 41 and I just never expected a stroke to happen to me. It was all very confusing and my brain wasn’t able to function properly. It took me a long time to process what had happened and for a first few weeks I don’t think I really knew what had happened. No one had sat down and told me I’d had a stroke. Looking back it would have helped a lot if someone had just sat down and explained what had happened, over and over again, until my brain took it in. But I was determined to recover and channelled my late dad’s ‘just get on with it’ attitude”.

“The thought of not being able to chat to my wife or friends again was terrifying. Slowly but surely more words came back but it’s taken a long time and I’m still relearning some words and phrases. I’ve had to teach myself how to read again by listening to Stephen Fry reading Harry Potter audio books and reading along. You can listen, read the books and pause or rewind when you need to. I’ve also been attending the Stroke Association’s Communication Plus group. It’s brilliant and it’s really helping me. I’m around other people who know what it’s like when your words just disappear or you say things in the wrong order. The speech therapist is helping me find new ways to communicate and giving more confidence. I just wish I’d be referred to the Stroke Association sooner as, for the first few months; I really wasn’t sure where to turn. As an English and Drama teacher, language and words are a massive part of my life, and my previous job as an actor, no words would destroy me. Lost for Words is a surreal; like your brain holds your words hostages, and no matter how hard to fight, you can't break free. Even now, they are days like that still, but I keeping holding for the good days”

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. There are over 4,000 strokes in Northern Ireland each year with around 35,000 people living with the affects of stroke.

Catherine Lowry, Speech and Language Therapist at the Stroke Association said “After a stroke around one in three people like Paul 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 programme is partially funded by the Southern Health and Social Care Trust.

Since Paul has completed the programme he has come a long way and still continues to develop his communication skills on a regular basis. He has shared his story in front of hundreds of people at the Rotary Conference in Belfast. He has also told his story at the Northern Ireland Stroke Conference and taken a question and answer session on what it is like living with a long term communication difficulty. Paul is now a recognised Stroke Association Ambassador and continues to promote the work the Stroke Association does throughout N.Ireland by increasing awareness of the challenges that stroke survivors face in the recovery. We’re all incredibly proud of his recovery”

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.