On the tip of my tongue - talking about Aphasia

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Long-Term Aphasia Support with Dyscover: Conversation Groups, Recovery, and Awareness

Hosts Rob Edwards and Jonathan Hirons introduce their podcast follow-up to Hirons’ film on aphasia, a language impairment often caused by stroke or brain injury, affecting speaking, reading, writing, and texting; they note 350,000 people in the UK have aphasia and awareness is low. After an ad inviting sponsorships, they speak with Dyscover charity staff Julie Samuel and Caroline McDonald, plus members Sarah, Neil, and Deena. Dyscover, founded over 30 years ago, provides long-term, facilitated conversation groups (in-person and online) for about 100 members and families. The members describe their strokes and varied recovery, ongoing challenges like fatigue and noise, and how Dyscover’s patience, practice, friendships, ambassador talks, research/training roles, and activities support confidence, identity, and life participation; they discuss patchy access, funding limits, and joint awareness efforts through the Aphasia Alliance.

00:00 Podcast Welcome

00:30 What Is Aphasia

01:09 Sponsor Message

02:16 Meet Dyscover Team

03:34 What Dyscover Does

05:48 Members Stroke Stories

06:20 Sarah Living With Aphasia

08:39 Neil Recovery Journey

11:06 Deena Progress And Challenges

13:46 Long Term Support Gaps

18:39 How Dyscover Helps Members

22:05 Neil As Ambassador

23:59 Editing Skills Return

24:40 Back at BBC Freelance

24:48 Deena Finds Support

26:28 Future of Discover

28:12 Online Groups Reach

30:36 Government Awareness Gap

31:24 Ambassadors Long Term Support

36:30 Deena Cycling Story

38:09 Closing Thanks and Resources

Dyscover webside:

https://dyscover.org.uk

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This podcast is funded by https://www.bas.org.uk

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

YouTube:    https://www.youtube.com/@tipofmytonguefilm

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The Tavistock Trust for Aphasia website

http://aphasiatavistocktrust.org

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Creativity, Hope, and Life After Stroke: Supporting People with Aphasia Beyond Rehab

Hosts Rob Edwards and Jonathan Hirons introduce their “On the Tip of My Tongue” podcast, a follow-up to Jonathan’s film about aphasia, a brain-injury condition often caused by stroke that affects language in speaking, writing, reading, and texting; they note 350,000 people in the UK have aphasia yet public awareness is low compared with Parkinson’s. Guest Dr. Jess Johansson, a senior stroke researcher at the University of Leeds/Bradford Institute of Health Research, discusses her 13 years in stroke research and a planned NIHR fellowship application to integrate creative approaches into stroke care and extend support after services end. She describes using crafts like vision boards in stroke groups to promote relaxation, hope, and meaningful activity, emphasizing neuroplasticity and recovery beyond assumed plateaus. The conversation covers fragmented care, the value of groups and social connection, inclusion of people living alone or from deprived backgrounds, shifting away from deficit-focused models, engaging GPs, and raising aphasia awareness through public-facing art exhibitions.

00:00 Creativity After Stroke
00:25 Podcast Intro And Aphasia
01:22 Meet Dr Jess Johansson
02:00 Creative Care Fellowship Plan
03:28 Why Creativity Helps
05:04 Whole Person Recovery
07:16 Research With Stroke Groups
10:12 Access And Inequality
12:01 Living Alone And Support
13:28 Mental Health Adjustment
15:50 Recovery Beyond Plateau
19:43 GPs And Deficit Model
23:01 Raising Aphasia Awareness
25:47 Closing Thoughts And Thanks
26:42 Resources And Community

http://www.linkedin.com/in/dr-jess-johansson-091923383/

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Support the show:  Donate Now

This podcast is funded by https://www.bas.org.uk

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

YouTube:    https://www.youtube.com/@tipofmytonguefilm

Linkedin:    https://www.linkedin.com/in/jonathanhirons/

Instagram: https://www.instagram.com/tipofmytonguepodcast/

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The Tavistock Trust for Aphasia website

http://aphasiatavistocktrust.org

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Aphasia Awareness Month Q&A: Myths, Carer Support, Recovery, and the Future

During Aphasia Awareness Month, the podcast hosts a Q&A on aphasia—an often overlooked language disorder affecting speaking, understanding, reading, and writing, commonly after stroke or brain injury—with more than 350,000 people living with it in the UK. Guest Ann Hirons shares a carer’s perspective, discussing how aphasia is treated as a secondary condition, its “quiet crisis” impact on identity and family life, and the need to avoid carer burnout by creating therapy-free zones. The episode debunks the myth that impaired speech means impaired intellect, offers practical tips for everyday interactions (patience, simple questions, don’t finish sentences, use writing/pointing), and explores living with slowed communication and fatigue. It addresses the post-NHS-therapy “cliff edge,” benefits of peer groups, realistic recovery through practice and small steps, and roles for AI tools and creative outlets like film, art, and music supported by neuroplasticity.

00:00 Aphasia Awareness Intro
01:49 Why Aphasia Is Overlooked
03:53 Carer Burnout Balance
06:11 Everyday Anxiety And Support
09:20 Myths About Intelligence
11:36 Simple Communication Tips
13:41 Invisible Prison Advice
16:16 Aphasia Fatigue Reality
17:47 After Therapy Ends
19:08 Recovery Expectations
21:45 AI And Future Tools
23:10 Creativity And Neuroplasticity
25:53 Closing And Resources

https://www.sayaphasia.org

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Support the show:  Donate Now

This podcast is funded by https://www.bas.org.uk

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

YouTube:    https://www.youtube.com/@tipofmytonguefilm

Linkedin:    https://www.linkedin.com/in/jonathanhirons/

Instagram: https://www.instagram.com/tipofmytonguepodcast/

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The Tavistock Trust for Aphasia website

http://aphasiatavistocktrust.org

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Speak Up for Aphasia: A Global Awareness Campaign Update

Guest Claire Bennington updates on fundraising for an international aphasia awareness campaign creating a suite of animated videos in multiple languages, launched worldwide with one consistent message. The Tavistock Trust for Aphasia has pledged £35,429 if matched; the campaign is at 57% (about £22,304/42,000 AUD) and aims to raise the remainder by end of June 2026, with a global launch targeted for Aphasia Awareness Month in June 2027. Partners include the Collaboration of Aphasia Trialists for native-speaker translations, champion networks, and free hosting of assets. The message emphasizes “recognize, respond and respect” and that aphasia does not affect intelligence; listeners are asked to donate, fundraise, provide support letters, and follow “Speak Up for Aphasia” on Facebook.

00:00 Welcome and Hosts
00:18 What Is Aphasia
01:24 Campaign Mission and Funding Goal
05:16 Global Partners and Translations
06:42 Public Message Recognize Respond Respect
09:03 Timeline to June 2027 Launch
11:09 How You Can Support
13:02 Wrap Up and Resources

Facebook:  https://www.facebook.com/profile.php?id=61572140991752

Donate to the International Aphasia Awareness campaign:

https://justgiving.com/campaign/qarc-uq-aphasia-awareness

Support the show

Support the show:  Donate Now

This podcast is funded by https://www.bas.org.uk

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

YouTube:    https://www.youtube.com/@tipofmytonguefilm

Linkedin:    https://www.linkedin.com/in/jonathanhirons/

Instagram: https://www.instagram.com/tipofmytonguepodcast/

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The Tavistock Trust for Aphasia website

http://aphasiatavistocktrust.org

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Hosts Rob Edwards and Jonathan Hirons introduce guest, Genevieve Richardson, a US speech-language pathologist, focuses on supporting “care partners,” arguing recovery improves when caregivers receive training and support to prevent burnout. They compare UK and US support systems, discussing variability in access, the role of insurance and advocacy, and the importance of in-person and online groups to combat isolation. Genevieve describes her telepractice, 12-month care partner roadmap with weekly training and live support, plus a bootcamp and membership, addressing communication strategies and practical life needs like legal and emergency planning. They discuss collaboration via new websites and resources, and share links to the film and Genevieve’s podcast and sites.

00:00 Aphasia Needs Action
00:12 Podcast Welcome and Aphasia Basics
01:09 Care Partners Matter
02:05 US vs UK Support Systems
04:20 Groups and Ongoing Resources
06:46 Genevieve Care Partner Roadmap
10:24 How the 12 Month Program Works
11:42 Community Fights Isolation
13:05 Scaling Up and The Numbers
14:16 Life Logistics and Caregiver Tools
17:50 Building a Global Movement
19:07 Aphasia Energy and The Gas Tank
20:28 New Website and Collaboration
21:52 Genevieve Podcast and Bootcamp
23:13 Wrap Up Links and Resources
24:44 Final Credits and Sign Off

Genevieve's websites:

https://www.dolifespeechpathology.com

https://www.lifeaphasiaacademy.co

Support the show

Support the show:  Donate Now

This podcast is funded by https://www.bas.org.uk

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

YouTube:    https://www.youtube.com/@tipofmytonguefilm

Linkedin:    https://www.linkedin.com/in/jonathanhirons/

Instagram: https://www.instagram.com/tipofmytonguepodcast/

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The Tavistock Trust for Aphasia website

http://aphasiatavistocktrust.org

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Hanka Mayhew: A Polyglot’s Journey Through Aphasia and Advocacy

Hanka Mayhew lived in Spain for 11 years with her husband and three children, speaking five languages and working as an English teacher and translator until a massive brain bleed left her with aphasia and unable to speak. After three months in hospital in Spain and three in England, she spent a year in a wheelchair relearning how to live. On the Tip of My Tongue podcast, she explains that English and German are easiest, Spanish is slowly returning with little practice, and she can understand some French and Russian but cannot speak them; she retained reading ability but reads more slowly. In February 2024 she joined the Aphasia International Association and became a Say Aphasia ambassador, traveling to assemblies and conferences across Europe and giving talks with therapist support to raise awareness and build an international aphasia community.

00:00 Life in Spain
00:22 Stroke and Aphasia
00:58 Recovery Journey
01:11 Languages After Stroke
03:09 Reading and Fatigue
03:57 Joining AIA and Speaking
05:20 Aphasia Day in Italy
05:53 Future Plans and Travel
07:36 AIA Community and Outreach
11:05 Final Reflections

Support the show

Support the show:  Donate Now

This podcast is funded by https://www.bas.org.uk

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

YouTube:    https://www.youtube.com/@tipofmytonguefilm

Linkedin:    https://www.linkedin.com/in/jonathanhirons/

Instagram: https://www.instagram.com/tipofmytonguepodcast/

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The Tavistock Trust for Aphasia website

http://aphasiatavistocktrust.org

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In this episode of 'On the Tip of My Tongue,' hosts Rob Edwards and Jonathan Hirons with guest Dr. Abi Roper explore how artificial intelligence can assist people with Aphasia in finding their voices again. The discussion covers the ways AI aids in simplifying text, improving written communication, and developing speech recognition technologies. The episode features Jez Hodgkinson, who created an AI-driven app to help with word-finding and introduces Robert Baldcock, a musician using AI-based personalized voice technology. The conversation highlights both the promise and pitfalls of AI in this field, addressing issues such as AI's limitations in real-time conversations and the need for co-designing tools that are genuinely empowering for users with Aphasia.

00:00 Introduction to the Podcast
00:21 Understanding Aphasia and AI's Potential
01:03 Dr. Abi Roper on AI and Aphasia
01:42 AI's Role in Simplifying Text
02:39 Speech Recognition Challenges and Advances
04:48 Jez Hodgkinson's AI App for Word Finding
07:26 Chatbots and Human Conversation
10:41 AI's Limitations and Hallucinations
12:33 Visual Support and Multimodal Communication
14:09 Robert Baldock Personalized Synthetic Voice
17:03 Co-Designing AI Tools with People with Aphasia

Support the show

Support the show:  Donate Now

This podcast is funded by https://www.bas.org.uk

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

YouTube:    https://www.youtube.com/@tipofmytonguefilm

Linkedin:    https://www.linkedin.com/in/jonathanhirons/

Instagram: https://www.instagram.com/tipofmytonguepodcast/

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The Tavistock Trust for Aphasia website

http://aphasiatavistocktrust.org

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In this episode of 'On the Tip of My Tongue,' hosts Rob Edwards and Jonathan Hirons delve into the world of AI and its applications in treating Aphasia, a debilitating condition affecting language abilities, following brain injuries like strokes. Joining them is Dr. Abi Roper from City, St. George's University, London. Dr. Roper discusses how AI tools, like speech recognition technologies and AI-driven text simplification, benefit individuals with Aphasia by aiding communication and daily tasks. She also addresses the limitations of AI, such as its inability to fully replicate human conversational skills and the importance of verifying AI-generated information. The episode highlights ongoing research and projects aimed at harnessing AI in therapy, underscoring AI's potential to support but not replace human therapists.

00:00 Introduction to AI and Aphasia
01:18 Meet Dr. Abby Roper
01:43 AI's Role in Assisting Aphasia
03:13 Speech Recognition and Practical Uses
05:25 Challenges and Limitations of AI
27:07 The Future of AI in Therapy
30:35 Conclusion and Resources

Support the show

Support the show:  Donate Now

This podcast is funded by https://www.bas.org.uk

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

YouTube:    https://www.youtube.com/@tipofmytonguefilm

Linkedin:    https://www.linkedin.com/in/jonathanhirons/

Instagram: https://www.instagram.com/tipofmytonguepodcast/

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The Tavistock Trust for Aphasia website

http://aphasiatavistocktrust.org

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In this episode, Rob Edwards and Jonathan Hirons host Chris Greenhough, a stroke survivor with aphasia who leads support groups, and Lisa Thomas, a senior speech and language therapist with the NHS. They discuss the impact of aphasia, a condition affecting the brain's language capabilities, and the importance of community support and therapy. Chris shares his journey of recovery and involvement in running aphasia support groups, while Lisa talks about the challenges and successes in creating community communication groups. They also touch on the difficulties of raising awareness about aphasia and the need for better support from businesses and transport facilities to help individuals access group sessions.

00:00 Introduction to the Podcast

00:38 Understanding Aphasia

01:16 Chris's Journey with Aphasia

01:42 Lisa's Role and Contributions

02:06 Chris's Aphasia Groups

04:58 Lisa's Connection to Say Aphasia

06:56 Challenges and Solutions in Aphasia Care

10:36 Group Activities and Social Impact

14:52 Transport Issues and Community Support

22:06 Raising Awareness and Future Goals

24:49 Conclusion and Resource

https://www.sayaphasia.org/worcester

Support the show

Support the show:  Donate Now

This podcast is funded by https://www.bas.org.uk

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

YouTube:    https://www.youtube.com/@tipofmytonguefilm

Linkedin:    https://www.linkedin.com/in/jonathanhirons/

Instagram: https://www.instagram.com/tipofmytonguepodcast/

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The Tavistock Trust for Aphasia website

http://aphasiatavistocktrust.org

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AI and Aphasia: Overcoming Communication Barriers

In this episode of 'On the Tip of My Tongue' podcast, Jez shares his personal journey with Aphasia following a severe stroke in 2016. He discusses the challenges he faced in communicating and how he overcame them by starting a local Aphasia support group during the COVID-19 pandemic. Jez also delves into his long-standing interest in AI, dating back to the 1980s, and explains how AI has significantly advanced in recent years. He introduces an AI-powered app he developed to assist Aphasia sufferers in recalling words more easily. The conversation highlights the potential of AI to support individuals with communication difficulties while noting the broader implications of AI technology in society.

00:00 Introduction and Guest Background
00:15 Overcoming Aphasia: Personal Journey
01:28 Community Involvement and Support Groups
03:17 Introduction to AI and Early Experiences
05:14 Developing an AI App for Aphasia
15:41 Practical Uses of AI in Daily Life
22:27 Challenges and Future of AI
25:17 Conclusion and Final Thoughts

Say Aphasia Group Winchester and Southampton 

https://www.sayaphasia.org/winchester

Support the show

Support the show:  Donate Now

This podcast is funded by https://www.bas.org.uk

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

YouTube:    https://www.youtube.com/@tipofmytonguefilm

Linkedin:    https://www.linkedin.com/in/jonathanhirons/

Instagram: https://www.instagram.com/tipofmytonguepodcast/

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The Tavistock Trust for Aphasia website

http://aphasiatavistocktrust.org