June is National Aphasia month and to celebrate Colin Lyall, one of the founders of Say Aphasia wrote 30 Facebook posts about some of the people involved in the organisation, one a day for the whole of June.
'It was a brilliant thing to do but had I realised how much work it would be I might not have been so enthusiastic'
Below are the people that Colin spoke to during the month and a bit about their stories - but the last post (the first one shown below) is Colin's post about forming Say Aphasia
Story #30. Colin has Aphasia. I've been doing Aphasia Awareness Month every day for every story. And now I'm knackered!! So here's a summary:
* 33% have aphasia that had a stroke.
* 350,000 in UK have aphasia.
* 85% never heard of it!
* Speaking, reading, writing, numbers are wiped out, and you try to re-learn it again.
* The new wiring of the brain is different, and the new language is not 100%.
* I can't do he/she, his/hers, him/hers, man/woman, left/right
* My story every day takes about two hours, for a couple of paragraphs.
* All of my email and text does 'voice recognition' with my iPhone, and takes a long time.
* Every morning I'm very alert, the afternoon I'm okay, in the evening I'm tired. A lot of people are the same.
* My sense of humour is certainly still here, though I think I'm mainly laughing at myself!!
"He founded the Say Aphasia group just 6 months ago and it's gone from strength to strength and the numbers have grown considerably!! He's always doing things that will makes us money! We as a group have done Paddle Round the Pier, marathon, desert car race, pub quiz etc. We're doing Brighton Pride too which should be fun! Colin is always a positive and outgoing person and the group will go onwards and upwards!!"
Story #29. Rachel, Dulcie and Nicky are working for the Community Neuro Rehabilitation Team (CNRT), with Sussex Community Foundation NHS Trust.
Rachel is a Speech and Language Therapist working with people following stroke or brain injury. Many of my patients have aphasia, and we work with them alongside their family and friends to improve or support their communication. As aphasia can be a long-term condition, this can mean working with patients and families for long periods of time, or helping them to adjust to living with a communication difficulty. A huge part of this process for many people is meeting others with similar difficulties and experiences through community groups like Say Aphasia.
Dulcie is a Physiotherapist. Her role is to assess, treat and manage movement problems which result from neurological injury. Over the years, Dulcie has worked with many people who have aphasia. The CNRT are a multidisciplinary team and adopt a patient centred approach. Joint visits with the Speech and Language Therapist can be invaluable when working with an individual who has aphasia.
Nicky is an Occupational Therapist. Her role is to assess and treat physical and cognitive problems, and issue equipment as appropriate. She also provides support with re adjustment to everyday activities, including: participation in the home, community and return to work. Nicky has worked with lots of people with aphasia over the years. Cognitive issues such as poor attention/concentration, reduced memory and difficulties with processing information can impact on a person's ability to communicate effectively. Occupational Therapists work closely with Speech and Language Therapists to support people with cognitive communication problems.
Story #28. Keith has Aphasia. He didn't have a stroke. He had a brain haemorrhage caused by a brain aneurysm bursting. He has seizures as well, although a lot of people have seizures after a stroke. But he is very positive and outgoing. He really likes the drop-in group, and already he has the #SayAphasia t-shirt, with pen's and mugs as well!
Story #27. Jo has worked in marketing 'since the year dot' and runs her business ''Frank! Communications'' www.frankcontheweb.com from her office Woodingdean. She has worked with #SayAphasia developing their logo/brand and website over the past few months. The website was built in-house using a logo and design style developed by Brighton based Vicky Trainer. The search engine optimisation has been done by our sister company www.build14me.com
She says 'I didn't know what Aphasia was until I spoke to Colin, Paul, Carole and Nicole and I quickly realised that this lovely group of people had a condition that was completely life-changing'. My colleague Ben and I went along to one of the Friday drop-ins and really got a sense of how important the weekly meets were to everyone who attended. As with all things, once I had become aware of 'Aphasia' I realised that I could play a small part in helping Colin (and his incredible crew) to make more of a noise… and hopefully with the vibrantly coloured and instantly recognisable logo we have a brand that can grow with the charity. As a company we have a mission which sounds very grand but is quite simple really... 'to make the lives of the people in the community in which we live and work better'. I hope that by supporting Colin as he drives #SayAphasia forward we can help make the tiniest bit of difference to people living, every day, with Aphasia'
When Jo is not doing her marketing thing she spends a lot of time doing Improv and writing/directing/producing local pantomimes, #WoodingdeanPlayers woodingdeanplayers.co.uk - probably the thing she is proudest of!
Story #25. Sarah has Aphasia. She had a stroke when she was 18 year old, and she could speak at all. But now, with speech therapy and very determined, she's much better. It's a slow process for aphasia, but now she's has lots of conference, lectures, videos, YouTube etc. @sarahscottaphasia. She's a star, and thank you for your advice when I was thinking to do my own charity. And hopefully quite soon she'll go to Hove drop-in group to say hello!
Story #24. Ed has Aphasia. He really likes the drop-in group. He's very quiet, but he just likes to be there. He would like to say something but the words get jumbled, but it's all in there waiting to come out, but he knows there is no rush, and he perseveres and gets there in the end! He really enjoys the art class as well!
Story #23. Pat has Aphasia. She's had aphasia about 20 years ago, but she still fit and well. She can't go out very much, anymore, but she likes a chinwag when the befriending volunteers to say hello. She can't read or write very well, but her speech is much better. But sometime she can't get the word out, so she says "no-i-dea" to say what she's thinking. She's a character!!
Story #22. Tony has Aphasia. He didn't realise that there was a centre for a drop-in group with other people that have aphasia until recently. And he really likes it! It's very relaxing, and there's no rush to get the words right. He likes exchanging ideas and experiences, and meet people who understand. And of course he really likes the Say Aphasia T-shirt as well!!
Story #21. Ana is an experienced Speech and Language Therapist who specialises in working with adults with acquired neurological conditions, including stroke and traumatic brain injury. She qualified in 2000 and has worked for the Sussex Community NHS Trust in Community Neuro Rehabilitation Teams in Brighton and Worthing. It was during her w ork in Brighton that she met several members of the drop-in group through the Aphasia Befriending Scheme.
She has supported our aphasia drop-in group since it was established. Ana's role has involved promotion of the service, supporting people with aphasia with awareness raising, fundraising and working to achieve long-term sustainability of the group.
Ana recently completed, with Distinction, an MSc in Advanced Practice in Health and Social Care (Speech, Language and Communication) at City University London. She now works as an independent Speech and Language Therapist www.sussexspeechtherapy.com and for the Surrey-based charity, QEF, in their brain injury centre.
Ana continues to support Say Aphasia and was delighted to become a Trustee of the charity: "I feel so privileged to know and work with such an inspirational group of people. The support they provide to those with aphasia in the local community is invaluable. It is fantastic to see this group continuing to grow and reach more and more people."
Story #20. John (right) has Aphasia. His wife, Doris, has aphasia as well. John speech is zero. He gets some weird noises, but his vowels can't get the sentence right. He is very very frustrating. He likes to have a ten minute walk every day, with a stick, but apart from that, not a lot. Although, every month he goes to #speakability group. Before the stroke, he was an avid season ticket for 40 years for Brighton and Hove Albion. But now he can't, but he always has his cap on! Seea-gulllls!!!
Story #19. Doris has Aphasia. She had a stroke four years ago, and then her husband had a stroke and aphasia about two years ago. Doris hasn't got a lot of family or friends, so every day she just watch TV. She can't go outside, and less other people are with her. The positive side, we have befriending scheme, so volunteers to say hello, and every month she goes to #speakability group and have an outing for a couple of hours. But she's not bitter. She's always positive. She's just a star!!!
Story #18. David has Aphasia. After his stroke, he has lost the feeling in his right arm and leg, and have to have a walking stick every day. He had a fall the other week, and now he has a hip replacement. It's still very sore, but he managed to get to the Say Aphasia drop-in again. He really likes the group, and he's determined to get better. Onwards and upwards!!
Story #17. Joan has Aphasia. She is very very quiet. And very very slow to talk. She likes the drop-in and she likes the art class very much. But if she liked to say something, it takes 3 to 4 times to work out what she saying. But she never fret. She's always calm and relaxed, and she want to get her speech better.
Story #16. Mac has Aphasia. He really likes the drop-in group. He's very quiet, but he just likes to be there. Sometimes he would like to say something but he just can't get the words right. It's frustrating, but he knows there is no rush, and he perseveres and gets there in the end! He really likes the art class. He is very focused for a couple of hours, and he's a natural!!
Story #15. Kirsty is a Speech and Language Therapist who works with adults with acquired neurological conditions. A large part of Kirsty's work is with people who have had a stroke and have aphasia. Kirsty qualified as a Speech and Language Therapist in 1998. She has worked as the Lead Speech and Language Therapist for Sussex Community NHS Foundation Trust, Community Neuro Rehabilitation Team in Brighton and Hove since 2004.
In 2008, Kirsty secured funding to set up an Aphasia Befriending Scheme. I was acutely aware that once people with aphasia completed their period of intensive neuro rehab, they would often feel socially isolated and alone. There were a few community stroke groups, but none of them catered specifically for people with aphasia. Also, some people are housebound and cannot access the community easily. The creation of the Aphasia Befriending Scheme, a peer support service provided in a patient's home was aimed to target this vulnerable group. It has gone from strength to strength, and thanks to the loyal support and dedication of a core group of befrienders, who are also integral to 'Say Aphasia', it continues to offer a lifeline to many people in Brighton and Hove living with Aphasia.
It is a privilege to work as a Speech and Language Therapist. Every day presents new challenges, so work is never dull. I feel honoured to have worked with so many inspirational people.
Story #14. David has Aphasia. His speech is only about 5% after the stroke, and he's very frustrated. But he really wants to get a little bit better. In his home on the computer, he does tutorials every week to get some of the words better, but it's very slow to learn again. Although, he managed to get the word 'Guin-ness', which is a plus!!
Story #13. Jean has Aphasia. Her speech is much much better, but she can speak only very very quietly after her stroke. She loves the drop-in group, because it's relaxing, and if she wants to say something, she has time to get the right words and is no rush. And she has lots of topics!!
Story #12. Chris has Aphasia. He had his stroke in his early thirties, and a few years on he is doing really well, staying very positive. He went to the #StrokeAssociation conference two weeks ago, and our exhibition stand was a success. Also he was on the BBC interview with us, and came across very well. And he had great talented in the art class too!
Story #11. Nicole has Aphasia. After her stroke, she has lost the feeling in her right arm and leg, and have to have a walking stick every day. But she's always smiling and positive! She does volunteers for #NHS stroke befriending scheme, and she likes #Speakability. But also she really likes Say Aphasia. We have lots of awareness campaigns now, and Nicole is always part of the team. And she's always jolly!!
Story #10. Gary has Apha sia, but he is a legend! He loves our charity, #SayAphasia, and he always early on Friday to get ready and organising for our drop-in group. (And he also likes #Dyscover aphasia charity as well). He has lots of toys and gadgets, so our drop-in is always fun!!
Story #9. Amanda is volunteer for Say Aphasia. She has interaction and conversations with aphasia, and she does a really nice cup of tea as well! She might be doing speech and language therapy course. Watch that space.....!
Story #8. Shaun has Aphasia. When he first went to the drop-in centre, he couldn't really speak very well and had to communicate by drawing diagrams! But was always good at the thumbs up signal! Now he has 50% speech he's much better. He's been taking part in #EvaPark research in London for advisory group meeting. And of course, quite recently he got a new puppy, and he always greet you with a smile!
Story #7. Emily has Aphasia but she is very active. She used to go to London quite a lot for the communication disability network charity, for aphasia drop-in group and every month she worked on a editorial newspaper group. Now, she has a couple of volunteer charities she supports in Brighton & Hove. And of course she has a lovely dog as well, which is always welcome at Say Aphasia!
Story #6. Chris had Aphasia. Even though he couldn't get the words out, he did a talk for Say Aphasia drop-in group, about the South Downs National Park. He's very good in the art class as well! What as amazing man!
Story #5. Carole had Aphasia but she's very determined and positive. She's very active doing raffles and prizes for events for Say Aphasia, and she likes to go to #Speakability group and also her local church as well. She's superstar!!
Story #4, Adrian has Aphasia. His speech is only about 10%, but he is still very active. He works once-a-week in a charity superstore and furniture warehouse. His hobbies are swimming in the sea, and working out at the gym, even though his right side is very weak. What as inspiration! (and I think he likes the football as well)!!
Story #3. Terry has Aphasia. She's gets very frustrated when she can't get the words out. She likes our charity, Say Aphasia, and every month she likes the art class, which makes her feel calm and relaxed! And she's pretty good as well!!
Story #2. Paul has Aphasia. He really likes the drop-in. He gets the tables ready in the morning every Friday! He's always happy and positive!
Story #1 Colin has Aphasia. He founded the Say Aphasia Charity. He won't say this but he works tirelessly to make the charity as successful as possible in raising awareness about Aphasia and helping people who live with the condition. He is completely inspirational and pretty hard to say 'no' to – so gets things done.
To find out more about National Aphasia Month visit https://www.stroke.org.uk/what-stroke/aphasia-awar...
To find out more about Say Aphasia see sayaphasia.org/about-say-aphasia