On the tip of my tongue - talking about Aphasia

Storbritannien · Jonathan Hirons and Rob Edwards

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In January 2019, while working in London, Jonathan Hirons’s life suddenly changed.

He remembers sitting in a business meeting with colleagues discussing a work project when he “began to feel strange”.

Jonathan soon found that he couldn’t make changes to the document he was working on, and he began to struggle to find the words to speak.

Fortunately, realising something was very wrong, his colleagues acted quickly and called an ambulance.

Jonathan was rushed to University College Hospital, where CT and MRI scans showed he had suffered a stroke caused by a bleed on the brain. He spent five nights in hospital and was diagnosed with aphasia.

Following Jonathan’s stroke, many everyday things became a struggle, including work. “My work stopped on that day,” he explained. “Initially, I couldn’t speak properly, and I was unable to read or write”.

Additionally, Jonathan couldn’t remember much of where he lived. He remembered his postcode, but not his address, mobile number and the PIN for his bank account. Jonathan also sometimes had trouble understanding what was being said to him. He could, however, sign his name.

This was a worrying time for Jonathan and his loved ones. He had to stop driving. His wife, Ann, ensured he carried a card with his name and address and contact numbers.

However, recognising the importance of starting the rehabilitation process as soon as possible, Ann also encouraged Jonathan to begin reading out loud.

Every day a small amount of time was set aside to read a few lines of a book. In addition, Ann started using nursery school flashcards to help Jonathan with word recognition and writing.

When speech therapy started, Jonathan vastly improved and is now at the point where he can read and write more fluently.

“Over time and with much help from my wife and speech therapists, I got my speech, my reading and my writing back on track,” said Jonathan. “Even now, I find reading and writing difficult, particularly if I’m tired and I still get words mixed up, but I’m a lot better”.

Jonathan is now using his experiences and creative skills to help others impacted by aphasia with his film ‘On the Tip of my Tongue.’
https://youtu.be/3kHmx1TrWxs

After successful funding campaigns, help from the Tavistock Trust and support with PR, the film was finished in September 2022.

“Currently, I am showing it to people in the health industry as a training resource: it recently has been successfully presented to Carers UK,” said Jonathan. He has also produced a film called ‘What is aphasia?’

“So here I am four years later, and I’m still wanting to put the word out about aphasia, so if you read this, please pass it on to as many people as you can so that we can keep the interest going,” he added.

Jonathan said he wants people to understand that aphasia is a hidden disability and that he feels there is a lack of support once the initial rehabilitation is over.

“The main problem with aphasia is it is very difficult to explain. People say, ‘you seem fine,’ but they don’t know about [difficulties with not] being able to form words quickly or following a conversation in a group. Just because you have lost your words, it does not mean you have lost your intellect.

“Recovery from strokes and head injuries vary considerably. Some people can regain the ability to function independently others need more help. Help and support tends to come from charities and the family.” But despite the immense challenges faced by people living with aphasia, Jonathan’s message to others is one of hope. “Persevere. It may seem to be hopeless, but improvements will come. Engage with fellow sufferers and, if possible, join a group”.

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On the tip of my tongue: Series 1 Episode 6 - What we have learned so far...
8 aug· On the tip of my tongue - talking about Aphasia
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Reflecting on the Journey: Uncovering the Themes of Aphasia Awareness

In the final episode of Series 1 of 'On the Tip of My Tongue,' hosts Rob Edwards and Jonathan Hirons review the key themes and insights from their podcast series dedicated to raising awareness about aphasia. They discuss the stigmatization and misunderstandings surrounding the condition, share personal stories from guests such as Dr. Trevor Powell and insights from Michael Shann on the role of carers. The episode underscores the importance of caring, the challenges faced by those with aphasia, and looks ahead to future technological advancements in treatment.

00:00 Introduction to the Podcast
00:16 Reflecting on the Series
00:59 Understanding Aphasia and Stigmatization
05:22 Personal Experiences with Aphasia
07:43 The Role of Carers
10:59 Future of Aphasia Treatment
11:15 Conclusion and Next Steps
Support the show
To watch Jonathan’s film: https://tipofmytonguefilm.com

http://x.com/buffaloloungeuk
https://www.linkedin.com/in/jonathanhirons/

The Tavistock Trust for Aphasia website

http://aphasiatavistocktrust.org
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On the tip of my tongue: Series 1 Episode 5 - Brain Health with Dr Trevor Powell
24 jul· On the tip of my tongue - talking about Aphasia
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Intertwined Health: Neuropsychology, Brain Health, and Insights from Dr. Trevor Powell

In this episode of 'On the Tip of My Tongue,' Dr. Trevor Powell, a consultant clinical neuropsychologist, discusses the interconnectedness of physical and mental health, emphasizing how psychological processes influence physical conditions. He addresses the stigma surrounding mental health by comparing it to physical health problems. Dr. Powell provides insights into neuropsychology, detailing its evolution and its critical role in assessing and rehabilitating brain injuries. The conversation touches on cognitive rehabilitation, the significance of insight in brain injuries, and the importance of physical and mental activities for brain health. The episode also delves into aphasia, its impact on language functions, and aims to dispel prejudices associated with the condition. Additionally, there is a light-hearted discussion about walking football and its benefits for mental and physical well-being.

00:00 Introduction to Dr. Trevor Powell
01:56 The Interconnection of Physical and Mental Health
03:48 Understanding Neuropsychology
04:59 Insight and Cognitive Decline
07:35 Dr. Powell's Journey and Charity Work
11:03 Language Functions and Brain Injuries
15:50 Walking Football and Mental Health
18:16 Final Thoughts on Brain Health

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).

Dr Powell's books include: The Mental Health Handbook; Head Injury, A Practical Guide; The Brain Injury Workbook and, more recently, Recognising Asperger’s Syndrome.
Support the show
To watch Jonathan’s film: https://tipofmytonguefilm.com

http://x.com/buffaloloungeuk
https://www.linkedin.com/in/jonathanhirons/

The Tavistock Trust for Aphasia website

http://aphasiatavistocktrust.org
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On the tip of my tongue : Series 1 Episode 4 - Carers with Ann Hirons
11 jul· On the tip of my tongue - talking about Aphasia
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Caring for Loved Ones with Aphasia: A Personal Journey with Ann
In this episode of the 'On the Tip of My Tongue' podcast, we welcome Ann, Jon's wife, to discuss her experience caring for a partner with aphasia following his stroke. Ann shares her professional background in psychology and addiction therapy within the NHS, which provided her some tools in managing Jon's condition. The conversation covers the initial challenges, the importance of early intervention and therapy, and the support systems and strategies Ann employed to assist John's recovery. Ann emphasizes the value of support groups and staying positive, while highlighting her journey from managing overwhelming emotions to achieving significant milestones in Jon's rehabilitative process.
Support the show
To watch Jonathan’s film: https://tipofmytonguefilm.com

http://x.com/buffaloloungeuk
https://www.linkedin.com/in/jonathanhirons/

The Tavistock Trust for Aphasia website

http://aphasiatavistocktrust.org
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On the tip of my tongue: Series 1 Episode 3 - Caring and carers - Michael Shann
11 jun· On the tip of my tongue - talking about Aphasia
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Supporting Carers: Insights and Initiatives from Carers UK

In this episode, Michael Shann, head of carer support at Carers UK, discusses his 12.5-year journey with the charity, highlighting its mission to improve the lives of carers. He provides an in-depth overview of the services offered, including a helpline, online and in-person meetups, and various support resources. Michael also elaborates on the challenges carers face, such as mental health issues and financial difficulties, and emphasizes the vital role carers play in the economy. The conversation touches on ongoing campaigns for policy reform and future plans for Carers UK's 60th anniversary, aiming to increase awareness and support for carers.

00:00 Introduction and Personal Background
01:44 Day-to-Day Work at Carers UK
03:29 Support Services and Resources
04:36 Membership and Volunteering
06:41 Challenges and Peer Support
09:12 Finding and Accessing Support
11:16 Current Issues and Future Plans
16:54 The Role and Impact of Carers
20:14 Conclusion and Final Thoughts

Carers UK is the leading national charity for unpaid carers.
It supports, advocate for, champion and connect carers across the UK, so that no one has to care alone.

Making life better for carers
Looking after someone can be a rewarding experience but it can also be lonely and bewildering.
For almost 60 years Carers UK has been making life better for carers, raising their voices together to call for change and seek recognition and support.
Guided by a Board of Trustees that's primarily made up of current and former carers, it is here to make life better for carers, listening to what carers tell us and rooted in the real experiences of its members.
Support the show
To watch Jonathan’s film: https://tipofmytonguefilm.com

http://x.com/buffaloloungeuk
https://www.linkedin.com/in/jonathanhirons/

The Tavistock Trust for Aphasia website

http://aphasiatavistocktrust.org
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On the tip of my tongue: Series 1 Episode 2 - Living with Aphasia and Charities
15 maj· On the tip of my tongue - talking about Aphasia
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Understanding Aphasia: A Deep Dive into the Hidden Disability

In this episode of the 'On the Tip of My Tongue' podcast, hosts Rob Edwards and Jonathan Hirons discuss aphasia, a little-known yet common condition affecting language and communication due to brain injury. They chat with Barbara Chalk, a retired speech and language therapist and trustee of the charity Say Aphasia, to explore why aphasia is under-recognized, the various challenges it poses, and the support structures available for those affected. Barbara shares insights on the nuances of the condition, its impact on self-esteem, and the importance of long-term support and community for rehabilitation and coping.

00:00 Introduction to Aphasia
00:15 Meet the Hosts and Guest
00:32 Understanding Aphasia
02:00 Challenges of Living with Aphasia
05:21 Misconceptions and Public Perception
07:49 Therapy and Rehabilitation
13:08 Long-term Support and Say Aphasia
14:01 Personal Experiences and Coping Strategies
15:08 Funding and NHS Challenges
17:20 Research and Future Directions
32:04 Conclusion and Resources
33:10 Preview of Next Episode

APHASIA

"A lot of people's experience of aphasia is that nobody knows what it is and it's a hidden disability. Not being recognised as having something seriously wrong with you is incredibly frustrating"

"Is there something, is this an insightful way to kind of talk about aphasia? Is there something inherent in the condition itself, being something to do with the voice rather than the body"

ABOUT SAY APHASIA

"The joy of it is it's run by people with aphasia. Now, you know, a lot of people with aphasia are quite young, working age, and if they can't go back to work, they're kind of, all their peers, all their friends will be working and they'll sit at home going feel so hopeless, I can't do anything."

BARBARA CHALK
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

To watch Jonathan’s film: https://tipofmytonguefilm.com

https://sayaphasia.org
http://x.com/buffaloloungeuk
https://www.linkedin.com/in/jonathanhirons/

The Tavistock Trust for Aphasia website

http://aphasiatavistocktrust.org

Support the show
To watch Jonathan’s film: https://tipofmytonguefilm.com

http://x.com/buffaloloungeuk
https://www.linkedin.com/in/jonathanhirons/

The Tavistock Trust for Aphasia website

http://aphasiatavistocktrust.org
- Lyssna Lyssna igen Fortsätt Lyssnar...
- Lyssna senare Lyssna senare
On the tip of my tongue: Series 1 Episode 1 - Living with Aphasia
19 mar· On the tip of my tongue - talking about Aphasia
Send us a text
Understanding Aphasia: Personal Journeys and Insights

In this episode of 'On the Tip of My Tongue,' hosts Rob Edwards and Jonathan Hirons delve into the challenges and experiences of living with aphasia, a language disorder caused by brain injury. Jonathan shares his personal journey following a stroke, highlighting the struggles and the gradual recovery process. The discussion covers different types of aphasia, the importance of early therapy, and the social perceptions and misconceptions surrounding the condition. The episode aims to raise awareness, inspire hope, and provide valuable information for sufferers and their carers.

00:00 Introduction and Personal Story
00:15 Welcome to the Podcast
00:32 Understanding Aphasia
01:09 The Documentary: On the Tip of My Tongue
01:45 Experiencing a Stroke
02:54 Challenges with Language and Recovery
05:25 Raising Awareness and Offering Hope
06:23 Types of Aphasia
10:16 Road to Recovery
16:16 Social Confidence and Perceptions
21:23 Conclusion and Next Episode Preview
Support the show
To watch Jonathan’s film: https://tipofmytonguefilm.com

http://x.com/buffaloloungeuk
https://www.linkedin.com/in/jonathanhirons/

The Tavistock Trust for Aphasia website

http://aphasiatavistocktrust.org
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- Lyssna senare Lyssna senare

Avsnitt

On the tip of my tongue: Series 1 Episode 6 - What we have learned so far...

On the tip of my tongue: Series 1 Episode 5 - Brain Health with Dr Trevor Powell

On the tip of my tongue : Series 1 Episode 4 - Carers with Ann Hirons

On the tip of my tongue: Series 1 Episode 3 - Caring and carers - Michael Shann

On the tip of my tongue: Series 1 Episode 2 - Living with Aphasia and Charities

On the tip of my tongue: Series 1 Episode 1 - Living with Aphasia