COLIN LYALL Founder of Say Aphasia and a peer leader who runs the drop in groups. Expand Colin is the founder of Say Aphasia, with the support of friends who have aphasia. He had a stroke in 2013 which resulted in him becoming aphasic. He began the charity three years later when another aphasia charity ceased to exist. He knew first hand how much of a positive impact a support group has. And so he set up his own charity so that he could continue a much needed support group in his local area. Colin was 50 when he had his stroke, and could not longer continue his career as a Director of a commercially designed building services solution company. He had worked at MTT Consultants for 12 years. After he had a stroke he could not go back to work with his new condition 'aphasia'. He lost his successful career and his house which his wife had recently designed into their dream home. Colin is an extremely positive and determined man, and so, he took it upon himself to set up a charity to help others just like him. The charity has given him purpose, goals to achieve and a new sense of success. He hopes that this charity will become that life line for others too.
Kirsty Maguire Appointed to the Board of Trustees in April 2019 Expand 'I'm Kirsty, and I work for Sussex Community NHS Foundation Trust as a Speech and Language Therapist. I work as part of a Multi Disciplinary Team eg with physiotherapists, Occupational Therapists. My role is to provide intensive rehabilitation to adults with acquired neurological impairments, including stroke. Working with people with Aphasia is a large part of my job, and an area I find extremely rewarding yet challenging. Living with an acquired brain injury and aphasia is a life long condition, and I feel passionately about the importance of long term support for people in this position and their families. I have worked closely with Colin Lyall and a number of other people with Aphasia in Brighton and Hove as part of an Aphasia Befriending Scheme I coordinate. This aims to combat loneliness in housebound people living with aphasia. It compliments the work of Say Aphasia and their peer led groups, which offer a lifeline for many people affected by brain injury and aphasia. As a Trustee of the charity, I see my role as sharing my knowledge and experience of working with aphasia to help develop and guide the vision of the charity. This includes raising the profile of the charity and developing links between Say Aphasia and the NHS.'
Richard Talbot Richard helps raise money for Say Aphasia by running the Brighton Half Marathon every year. Expand We first met Richard when Colin, the founder of the charity had his stroke. Richard was Colin's speech therapist in 2013 and they have kept in contact ever since. 'I'm a qualified speech and language therapist with experience in a variety of adult neurology settings. I currently work part time in community rehabilitation in Sussex, alongside a research post at City University investigating the benefits of delivering social support and speech and language therapy to people with aphasia in an on-line virtual environment called EVA Park. I'm interested in the application of technology to aphasia rehabilitation, and bolstering links between research and clinical practice.'
Nicole Munn Nicole helps with the groups in Sussex Expand I'm Nicole. I've had my stroke since 2008. I couldn't walk or talk. I was in a wheelchair for a long time but gradually I got on with life , although it's very hard! As a peer leader I welcome everyone to the groups at Eastbourne and Chichester. Everyone is nervous at the beginning but we try to reassure you. Our group is made up of different people but all have Aphasia. Some can't talk at all. Some gets words out but they have difficulty - but it doesn't matter, we have time to listen. The main thing is we all have something in common and that's a start.
Carole Turner Carole helps with the groups in Sussex Expand "Hi everyone. Hope you are all keeping as well as possible in these difficult times. With the drop ins closed at the moment, it’s really very hard for us all with aphasia to communicate. So I have written this message to you all just to say that I am thinking of you, and looking forward to seeing you very soon. I am missing all the laughter 😂. I want you to write or draw or video or whatever you can to remember this time, so we can share this with each other. Let’s remember we have survived strokes and brain injuries! This virus will not get us!!!! We are stroke/ aphasia warriors!!! Stay strong my lovely friends!"
ANA AMAYA Appointed to the Board of Trustees in November 2016 Expand "I am an independent Speech and Language Therapist specialising in adult neurology, particularly supporting people with communication difficulties following stroke or other acquired brain injuries. During my work at Sussex Community NHS Trust, I helped to establish and led the Aphasia Befriending Scheme. It was through this role, that I met the founder, Colin Lyall, and the inspiring peer leaders of Say Aphasia. I worked as the Outreach Project Mentor for the Brighton and Hove aphasia drop-in group from February 2014 following its launch in October 2013. I now am proud to be a Trustee of Say Aphasia. My role includes sharing my experience and knowledge of working with people with aphasia, supporting fundraising initiatives and raising awareness of stroke and aphasia. It is wonderful to see Say Aphasia continuing to grow, offering fantastic services across the country to support people with aphasia, particularly the drop-in services. "
Tim Charnock Tim helps run the drop in groups in Hove, Worthing and Eastbourne. Expand Tim suffered a stroke, and now has dysarthria. Although he doesn't have aphasia, he finds the charity hugely helpful. And he has supported the charity from day one. Dysarthria often is characterised by slurred or slow speech that can be difficult to understand. Common causes of dysarthria include nervous system (neurological) disorders such as stroke, brain injury, brain tumours, and conditions that cause facial paralysis or tongue or throat muscle weakness. Tim is still okay with reading writing and numbers. The charity helps to keep his mind busy.
How Long Does it Take to Recover from Aphasia? ...people continue to improve over a period of years and even decades... Expand If the symptoms of aphasia last longer than two or three months after a stroke, a complete recovery is unlikely. However, it is important to note that some people continue to improve over a period of years and even decades. Improvement is a slow process that usually involves both helping the individual and family understand the nature of aphasia and learning compensatory strategies for communicating.
Mark Chappell Mark is currently running the Skipton drop in group. Expand Mark had a haemorrhagic stroke in 2012, he has dysphasia and wants to provide a safe, non judgemental, monthly drop-in group for people with aphasia to boost their confidence and help them to engage with life again. There is not much support for people with aphasia in the North of England which is why he was keen to start a drop-in group in Skipton, North Yorkshire. Mark enjoys listening to music and radio comedy and has a great interest in drawing, particularly caricatures.
David Mortimer David helps run the Hove drop in group every Friday. Expand David had a stroke in 2012, though fortunately he doesn't have aphasia, but the stroke left him half paralyse. He has become a great peer leader for the charity. He was extremely fortunate in that he didn't suffer from some of the usual deficiencies that follow a stroke so has decided to make the most of it. After a lifetime career in the aviation in the industry with Dan Air and then with a small tour operator, he felt well prepared to offer advice to those who find themselves in a similar position, and of course the more unfortunate stroke and aphasia victims.
Paul Stocken Paul helps with many of our groups and helps with our fundraising events. Expand Former vehicle locksmith, Paul had a stroke in 2008 at the age of 40. He could not return to work and so became a Peer Leader for the drop in groups in East Sussex. He also attends conferences for aphasia, and travels around the country to help raise awareness of aphasia and the charity.
How Do You Communicate With a Person With Aphasia? slow down, be patient, be concise with short sentences ... Expand See here for more communication tips
Can a Person Have Aphasia Without Having a Physical Disability? ...yes... Expand Yes, but many people with aphasia also have weakness or paralysis of their right leg and right arm. When a person acquires aphasia it is usually due to damage on the left side of the brain, which controls movements on the right side of the body.
How Common is Aphasia? ...far more than people are aware... Expand Aphasia affects about 350,000 people in the UK, and is more common than Parkinson’s Disease, cerebral palsy or muscular dystrophy. However, most people have never heard of it.
Who Acquires Aphasia? It can occur in people of all ages, races, nationalities and gender... Expand While aphasia is most common among older people, more and more people of all ages are being diagnosed with aphasia after suffering a stroke or brain injury. Most common cause of aphasia is a stroke. You can prevent the chance of having a stroke by leading a healthy lifestyle. Please see here for more information: stroke prevention Stroke Association
Does Aphasia Affect a Person’s Intelligence? No... Expand No. There are many types of aphasia. Some people have difficulty speaking while others may struggle to follow a conversation. In some people, aphasia is fairly mild and you might not notice it right away. In other cases, it can be very severe, affecting speaking, writing, reading, and listening. While specific symptoms can vary greatly, what all people with aphasia have in common are difficulties in communicating.
Can People Who Have Aphasia Return to Their Jobs? ...sometimes, though it can be very hard... Expand Sometimes. Since most jobs require speech and language skills, aphasia can make some types of work difficult. Individuals with mild or even moderate aphasia are sometimes able to work, but they may have to change jobs.
What is Aphasia Aphasia is a communication disability which occurs when the communication centres of the brain are damaged... Expand Aphasia is an acquired communication disorder that impairs a person’s ability to process language, but does not affect intelligence. Aphasia impairs the ability to speak and understand others, and most people with aphasia experience difficulty reading and writing. The diagnosis of aphasia does NOT imply a person has a mental illness or impairment in intelligence.
Emma Virrill Appointed to the Board of Trustees in September 2016 Expand I worked at MTT as Colin’s PA for 7 years before he had his stroke. I am pleased to now be a trustee of Say Aphasia to continue providing support. I hope that my financial and administrative experience provides assistance to the day to day running of such a fantastic charity.
DAVID LYALL Appointed to the Board of Trustees in September 2016 Expand I’m David, Colin’s brother and a trustee of the charity, SayAphasia. I’m immensely proud of what Colin and the team have achieved with the charity and thrilled that it reaches so many people in such a positive way. I run a small furniture making business which started in 1985 called Osiris furniture, I then merged with a friend and competitor in 2004 to create OPM Furniture. We manufacture bespoke board room and meeting room furniture using a mixture of traditional and modern materials and techniques, and incorporating current communications and technology equipment. I am in awe of what Say Aphasia has achieved in a relatively short time and with very limited resources, it is very important that the charity and especially the drop in centres are able to continue, as they not only provide a great opportunity for folk to get out, to meet and to be a part of a common community whilst participating in hobbies that otherwise may not be available, but it also gives the peer leaders, and the rest of the service users, a goal to focus on short, medium and long term. So although Colin probably doesn’t realise it, he is a great role model……an example of what can be achieved by anyone who is unfortunate enough to suffer the effects of a stroke.