Jonathan Hirons's journey following his stroke and diagnosis of aphasia is both inspiring and informative. Here’s a summary of his experience and insights about aphasia:
### Jonathan's Experience with Aphasia
1. **Initial Incident**: In January 2019, while in a business meeting, Jonathan began to feel strange and soon realized he could not communicate effectively. His colleagues quickly called for medical help.
2. **Medical Emergency**: He was rushed to University College Hospital, where scans revealed he had suffered a stroke due to a bleed on the brain. He spent five nights in the hospital and was diagnosed with **aphasia**.
3. **Impact on Daily Life**:
- Jonathan struggled with basic tasks such as speaking, reading, and writing.
- He had memory issues, recalling only his postcode but not his full address or other personal information.
- He faced challenges in understanding spoken language but could still sign his name.
4. **Support from Family**: His wife, Ann, played a crucial role in his recovery:
- She encouraged him to read aloud daily and used flashcards to aid in word recognition and writing.
- This early intervention was vital for his rehabilitation.
5. **Progress Through Therapy**: With the help of speech therapy, Jonathan made significant improvements:
- He regained much of his ability to read and write, although he still experiences difficulties, especially when tired.
6. **Advocacy and Awareness**:
- Jonathan has turned his experiences into a creative outlet by producing films, including **"On the Tip of My Tongue"** and **"What is Aphasia?"** These films aim to educate others about aphasia and its challenges.
- He actively shares his story to raise awareness about aphasia as a hidden disability and the ongoing need for support beyond initial rehabilitation.
### Understanding Aphasia
Aphasia is a language disorder that affects communication abilities, including:
- **Speaking**: Difficulty in forming words or sentences.
- **Understanding**: Challenges in comprehending spoken or written language.
- **Reading and Writing**: Problems with reading text or writing coherently.
### Key Takeaways
- **Aphasia is often a result of brain damage**, commonly from strokes, and can significantly impact daily life.
- **Early intervention and support** are crucial for recovery.
- **Awareness and education** about aphasia can help reduce stigma and improve support for those affected.
Jonathan's story highlights the resilience of individuals facing such challenges and the importance of community support in their recovery journey.
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Before having Aphasia and making “On the tip of my tongue” , Jonathan produced factual films, most recently for the EU’s Erasmus and Leonardo projects on subjects as wide-ranging as radicalization and entrepreneurship in the creative industries. In 2014, he produced the short fiction film Cast Adrift.
Rob Edwards is a versatile professional actor with a career spanning theatre, television, film, and radio. His impressive range includes performances from Ray Cooney's farces to Shakespearean classics and appearances in shows like Doctor Who. Rob's portrayal of Scar in the original West End production of "The Lion King" earned him an Olivier nomination. In 2018, he won the prestigious Royal Television Society Award for Best Actor for his role in the BBC drama "Men Who Sleep in Cars." Most recently, Rob captivated audiences as Major Metcalf in Agatha Christie's "The Mousetrap."
Trustee of Say Aphasia - https://www.sayaphasia.org
Barbara is a retired NHS speech and language therapist who specialised with adults with aphasia and other neurological conditions.
Barbara has also worked as a personnel manager for a local business and is a director of an established online book business.
She founded and was Chair of the charity, Living with Aphasia, in Exeter which joined forces with Say Aphasia in 2022.
She believes in the positive impact the charity has on people living with aphasia.
She will support their dedicated team to sustain their strong and successful future
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 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
I trained as a speech and language therapist (BA Hons, Reading University, UK) qualifying in 1993. After graduating I took a part time research assistant role on an aphasia project at Queen Margaret University in Edinburgh I then moved to UCL, taking up a research post on a projects in the UK to use conversation analysis (CA) to explore the impact of acute-onset aphasia on individuals' everyday conversations with family members After an ESRC/MRC funded post-doctoral fellowship I became a lecturer and then the first head of department of the newly formed Department of Language and Cognition. I secured Stroke Association funding for what became Better Conversations with Aphasia, a communication partner training intervention based on my PhD and post-doc work. I am now an Associate Professor and Programme Director of the MSc in Speech and Language Therapy.
Trevor Powell is a Chartered Clinical Psychologist and Clinical Neuropsychologist with over 30 years experience of working in mental health and neuropsychology in the NHS.
He is the clinical lead and manager for neuropsychology service in Berkshire and specialises in head injury (TBI) and more recently Asperger’s Syndrome (ASD).
Emma Rich is the Charity Coordinator at Say Aphasia, a charity that supports people with aphasia. She is also an advocate for neuro rehabilitation and better support for stroke and brain injury survivors.
What Emma has experienced:
What Emma advocates for:
Michael Shann is theHead of Carer Support at Carers UK
Michael is an experienced change management professional with over 25 years’ experience with three leading charities and the NHS. I have a proven track record in delivering and evaluating medium and large scale projects and services for the NHS, VSO, the British Heart Foundation and Carers UK.
He is also a writer and have published three books of poetry, Euphrasy, Walthamstow and To London.
https://www.linkedin.com/company/carers-uk/
Opened my 2nd SayAphasia charity group in Bishop Auckland this month.
I have aphasia due to a major car accident in 2017.
What is aphasia,
Aphasia is a disorder that affects how you communicate. It can impact your speech, as well as the way you write and understand both spoken and written language.
Aphasia usually happens suddenly after a stroke or a head injury.
isolation, anxiety, depression is some of the main issues sufferers have.
Opening up a group helps others to have somewhere to go where other people know what they are going through.
I Got Back Up was founded by Talia Lazarus in 2022, after a road accident in August 2021 that changed her life.
“In October 2021 I was re-learning how to walk, and in January 2023 I was learning how to run 21km for the London Landmarks Half Marathon.”
Falling off an electric scooter, and hitting a bus, Talia did not walk for ten weeks. Talia underwent emergency knee surgery in September 2021, and double knee surgery in February 2022.
Throughout her physical, mental, and emotional rollercoaster of a journey fuelled with an abundance of ups and downs, Talia began speaking with others who had been through their own stories. With that, I got back up came to life.
“I was 25 and I hit rock bottom. I lost everything. Physically, mentally, and emotionally I was broken in every way. That is the moment I realised I had the ability to change my own life and write a new story.”
As a storyteller dedicated to creating positive change, I use the power of narrative to challenge stereotypes and promote disability inclusion. Through social media, photography, and video, I amplify diverse voices and tell impactful stories.
My commitment to this cause is deeply personal, stemming from my own experience with disability after a traumatic brain injury in 2012. With a background as a high achiever in a prominent networking organisation, I provide a unique perspective on the intersection of disability and professional success.
Let's work together to build a more inclusive world.