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Understanding Aphasia: Personal Stories and Community Support
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.
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
In this episode of 'On the Tip of My Tongue,' hosts Rob Edwards and Jonathan Hirons welcome Talia Lazarus, a presenter, broadcaster, and host of the mental health podcast, 'I Got Back Up.' Talia shares her harrowing story of a devastating electric scooter accident in 2021, which resulted in serious leg injuries and an 18-month rehabilitation journey. She discusses her physical and mental recovery, overcoming multiple surgeries, and even achieving the incredible feat of running a half marathon only 10 months post-surgery. The conversation delves into the power of mindset, the significance of embracing fears, and the transformative journey that led Talia to a successful career in sports broadcasting and mental health advocacy. With heartfelt anecdotes and insightful advice, this episode underscores the importance of resilience, community, and self-belief.
00:00 Introduction to Talia Lazarus' Journey 00:48 Understanding Aphasia 01:49 The Accident and Immediate Aftermath 03:59 The Road to Recovery 05:58 Running a Half Marathon 09:29 Starting the Podcast 13:56 Career as a Presenter and Broadcaster 21:44 Embracing Positivity and Overcoming Challenges 31:43 Reflections and Future Plans 36:56 Closing Remarks and Farewell
Understanding Acquired Brain Injuries: Challenges and Support Systems plus Returning to Work
In this episode, Jonathan interviews Tamsin Keyes, the Publications and Research Manager at HEADWAY, the Brain Injury Association. Tamsin provides an in-depth explanation of what constitutes a brain injury, ranging from traumatic incidents to medical complications like strokes and aneurysms. She also outlines the difficulties individuals face when returning to work post-injury, including cognitive challenges and workplace accommodations. The discussion highlights the hidden nature of brain injuries and the importance of awareness, support, and legal rights under the Equality Act. Tamsin also shares resources and services provided by HEADWAY, including their helpline, local support groups, and vocational rehabilitation options. The episode aims to raise awareness and offer practical advice for individuals affected by brain injuries and their families.
00:00 Introduction to HEADWAY and Brain Injury 00:28 Understanding Brain Injuries 02:50 Challenges of Returning to Work 08:14 Support Systems for Employment 14:37 HEADWAY's Services and Support 23:27 Conclusion and Final Thoughts
In this episode of 'On the Tip of My Tongue,' hosts Rob Edwards and Jonathan Hirons discuss aphasia with Graham Hall, an orchestral percussionist who suffered a stroke a decade ago. Graham shares his experiences dealing with aphasia, its impact on his career, and the challenges of regaining his speech and musical abilities. Despite losing the joy in playing music, Graham found fulfilment in music arrangement and preparation. The discussion touches on brain injury recovery, neuroplasticity, and the importance of continuous practice. Graham's story aims to raise awareness about aphasia and encourages support for individuals with brain injuries.
00:00 Introduction and Personal Story 00:34 Welcome to the Podcast 00:52 Understanding Aphasia 01:45 Graham Hall's Stroke Experience 03:20 Challenges in Music Post-Stroke 06:00 Reconnecting with Music 10:07 Living with Aphasia 14:31 Raising Awareness and Support 27:58 The Role of Family and Friends 29:55 Creative Coping Mechanisms 33:06 Conclusion and Resources
Before my stroke (2014) I used parody to comment/mock the situation in my musical life. So I've been using that to describe my new life with aphasia. The lyrics are "contrafactum" (the substitution of text for another without change to the music) and comment on how I cope with brain damage and aphasia. The irony is that despite having musical anhedonia I'm still a musician!
Surviving Stroke and Navigating Aphasia: Nigel's Story
This podcast episode titled 'On the Tip of My Tongue' features Rob Edwards and Jonathan Hirons discussing aphasia, a language impairment often caused by a stroke or brain injury. They interview Paula Fearnley and Nigel Cheffers-Heard to hear Nigel's journey of recovering from a stroke that resulted in aphasia. Paula shares her challenges as a caregiver, their struggles with the healthcare system, and Nigel's progress over six years. The episode explores the social and occupational difficulties faced by aphasia patients and highlights the importance of community support, exercise, and persistence in recovery. It concludes by addressing the need for better workplace integration for those affected by aphasia.
00:00 A Shocking Turn of Events 00:29 Introduction to the Podcast 00:47 Understanding Aphasia 01:25 Nigel's Stroke Journey 04:07 The Struggle for Diagnosis 07:42 Recovery and Rehabilitation 10:57 Challenges in Daily Life 25:16 Returning to Work 31:58 Supporting Stroke Survivors 36:57 Conclusion and Resources
Emma Rich: Battling Aphasia and Advocating for Neuro Rehab
In this episode, Emma Rich, Charity Coordinator at Say Aphasia, shares her harrowing journey with severe brain injury and subsequent aphasia. She recounts her critical medical emergency, rehabilitation experiences, and the crucial role of neuroplasticity in her recovery. Emma discusses the importance of speech therapy, community support groups, and the uneven access to rehabilitation services. Advocating for better support and employment opportunities for brain injury and stroke survivors, Emma emphasizes the need for education, hope, and inclusive societal attitudes toward individuals with neurological conditions.
00:00 Introduction and Welcome 00:16 Emma's Brain Hemorrhage Experience 01:51 Recovery Journey Begins 03:45 Rehabilitation and Neuroplasticity 05:58 Challenges and Support Systems 10:21 Involvement with Say Aphasia 18:43 Employment and Inclusivity 29:34 Hope and Rehabilitation 31:54 Conclusion and Final Thoughts
In this episode, the host reflects on past events and highlights key themes such as surviving a critical health incident in Las Vegas, the significant role of communication in recovery from strokes, and the challenges and strategies for living with aphasia. The episode also emphasizes the importance of unpaid carers, their economic contribution, and the need for perseverance in finding effective communication methods post-injury. The narrative draws an analogy to living in a foreign country to convey the experience of aphasia, highlighting its often hidden nature and the frustration of not being recognized for having a serious condition.
00:00 Reflecting on Past Episodes 00:10 A Harrowing Experience in Las Vegas 00:40 The Importance of Communication Post-Stroke 00:52 Meet Pete Cody: A Story of Resilience 01:05 Tips for a Healthy Brain 01:31 The Role and Impact of Unpaid Carers 02:07 Understanding Aphasia: A Hidden Disability
Journey Through Aphasia: An Interview with Colin Lyle
In this episode of the On the Tip of My Tongue podcast, Colin Lyle, founder of the Say Aphasia charity, shares his powerful journey from experiencing a stroke and developing aphasia to actively supporting others with the condition. Colin talks about his stressful lifestyle that led to his stroke, the challenges he faced during recovery, and his efforts in starting the Say Aphasia charity. The episode covers the importance of speech and language therapy, the challenges of living with aphasia, and the mission to raise awareness and support for those affected. Colin’s inspiring story highlights the significance of community and peer support in navigating life with aphasia.
00:00 Introduction to Aphasia 02:22 Colin's Stroke and Initial Challenges 03:45 Speech and Language Therapy Journey 07:47 Founding Say Aphasia Charity 12:04 Expanding the Charity and Overcoming Hurdles 23:09 Future Plans and Reflections 31:33 Conclusion and Resources
Say Aphasia
The Say Aphasia Charity provides supportive drop-in groups for people with aphasia in the UK. It is run by people with aphasia for people with aphasia.
Aphasia is not a well known condition and so people with this communication disability can feel alone and isolated from their community.
Our aim is to provide continuous support in a social environment with people who are experiencing similar life changes.
Our charity makes a difference to people living with aphasia by:
Offering companionship and support
Helping to adjust to living with aphasia.
Meeting people who are experiencing a similar life change.
Making new life long friends.
Gaining tips and advice from others with aphasia.
Gaining confidence to socialise and communicate as best they can.
Re-gaining independence as much as they can.
Helping to reduce loneliness.
Providing support in a relaxed and welcoming environment.
Offering art class and singing class as a therapeutic way to relax and express themselves.
Rebuilding Lives After Stroke: Colin Lyle's Journey with Aphasia
In this episode of the Tip of My Tongue podcast, Colin Lyle, founder of the Say Aphasia charity, discusses his personal journey with aphasia following a stroke 11 years ago. Colin shares details about his former stressful career, his initial denial about the severity of his condition, and the extensive speech and language therapy that aided his recovery. He explains the challenges he faced, including the realization that he could no longer continue his previous work. Colin also talks about the founding of Say Aphasia, the expansion of the charity, and the group's mission to support people with aphasia. He touches on the importance of peer support groups, the impact of stress on health, and the future direction of his charity. Colin highlights the need for more awareness and support for aphasia, revealing that many people still lack access to necessary speech and language therapy.
00:00 Introduction to Aphasia and Colin's Journey 02:22 Colin's Stroke and Initial Recovery 03:26 Challenges and Realizations Post-Stroke 07:47 Founding Say Aphasia Charity 11:50 Expanding the Charity and Overcoming Obstacles 23:09 Future Plans and Reflections 31:33 Conclusion and Resources
Understanding the Role of the Royal College of Speech and Language Therapists
In this episode of the 'Tip of My Tongue' podcast, host Jonathan and Rob engage in a detailed conversation with Derek Munn, the Director of Policy and Public Affairs at the Royal College of Speech and Language Therapists. Munn shares insights on his role, which involves working with UK governments, managing legislative policies, and advocating for speech and language therapy services. He discusses the history and evolution of the Royal College, highlighting its formation, the role of speech therapists, and the importance of collaborative practices. The conversation also delves into the challenges of treating conditions like aphasia and the need for comprehensive communication support systems. Munn underscores the significance of raising public awareness about various speech and language disorders and the necessity of integrating speech therapists into multidisciplinary healthcare teams.
00:00 Introduction and Guest Welcome 01:19 Overview of the Royal College of Speech and Language Therapists 02:37 History and Evolution of Speech Therapy 05:02 Modern Speech Therapy Practices 06:22 Challenges in Speech Therapy and Aphasia Awareness 12:23 Workplace Inclusivity for People with Communication Challenges 21:41 Raising Awareness and Advocacy 31:37 Conclusion and Final Thoughts
Transformative Power of Music Therapy with Elizabeth Nightingale
In this podcast episode of 'On the Tip of My Tongue,' hosts Rob Edwards and Jonathan Hirons are joined by Elizabeth Nightingale, a neurological music therapist. The discussion delves into the impactful role of music therapy across various fields, including stroke recovery, pediatrics, and palliative care. Elizabeth shares insights into the innovative programs at Chilton Music Therapy, which blend music with community outreach and online learning. The conversation also covers the specifics of music therapy for Aphasia patients, highlighting the cognitive and emotional benefits, the development of new neural pathways, and the creation of supportive communities. The episode emphasizes the nationwide accessibility of these services through online platforms, making therapeutic music interventions available even in remote and under-served areas.
00:00 Introduction to the Podcast
00:54 Meet the Hosts and the Topic of Aphasia
01:49 Welcoming Elizabeth Nightingale
02:23 Overview of Chiltern Music Therapy
03:57 Impact of Music Therapy on Various Conditions
Better Conversations with Aphasia: In-Depth with Dr. Suzanne Beek
In this episode, Dr. Suzanne Beek, Associate Professor of Language and Cognition at UCL, discusses her innovative therapy called Better Conversations with Aphasia. She explains how aphasia, a communication difficulty often resulting from stroke, affects conversations and the simple strategies her program employs to improve communication between people with aphasia and their loved ones. Dr. Beek also talks about the therapeutic techniques, including video feedback, that speech and language therapists use to facilitate better conversations. The conversation also highlights common communication issues, such as 'test questions,' and the need for greater awareness and support for speech and language therapy.
00:00 Introduction to Dr. Suzanne Beak and Better Conversations with Aphasia 00:13 Understanding Aphasia: Cognitive Effort and Communication Challenges 01:53 Dr. Suzanne Beak's Background and Research Focus 02:48 The Concept of Better Conversations 03:36 Implementing Better Conversations with Aphasia 05:57 The Role of Video Feedback in Therapy 07:55 Common Communication Challenges and Solutions 08:08 Addressing Test Questions in Conversations 10:37 The Emotional Impact of Aphasia 19:12 Raising Awareness and Media Representation 21:26 Different Types of Aphasia: Stroke vs. Primary Progressive Aphasia 34:09 Funding and Support for Aphasia Research 36:10 Training and Future Directions in Aphasia Therapy 41:18 Accessing Better Conversations with Aphasia 42:40 Conclusion and Final Thoughts
Overcoming Aphasia: Pete Cody's Journey and Community Impact
In this episode, we talk to Pete Cody, a former Mondelez Cadbury salesman who became a peer leader for Say Aphasia after a serious car accident left him with aphasia. Pete discusses the challenges he faced transitioning from a high-paced sales job to living with a communication disorder, and how he found purpose by running aphasia support groups in Darlington and Bishop Auckland. He shares stories of personal struggles, the importance of community support, and the growth and impact of the aphasia groups he leads. The conversation highlights both the isolation that can come with aphasia and the hope and connection found through dedicated support networks.
00:00 Introduction to Pete Cody and His Journey 02:15 Life Before and After the Accident 04:15 Transition to Running Aphasia Groups 05:49 Challenges and Support in Managing Aphasia 07:44 Community Engagement and Growth 14:49 Future Plans and Aspirations 18:24 Concluding Thoughts and Reflections
Overcoming Trauma: Tom Ryan Elliott Talks Aphasia, Epilepsy, and Workplace Challenges
In this episode, we talk to Tom Ryan Elliott, who suffered a severe brain injury in 2014 leading to aphasia and epilepsy. He recounts his experience of how a work event in Las Vegas dramatically changed his life, leaving him in a coma and resulting in long-term disabilities. The discussion focuses on Tom's struggles and perseverance in the workplace, the lack of awareness about aphasia and epilepsy, and his journey towards building a new career in media and photography. Tom shares insights into the difficulties faced by people with disabilities in professional settings and his own future ambitions to raise awareness and secure more inclusive environments.
00:00 Introduction to Tom Ryan Elliott 02:25 Tom's Life-Changing Accident 05:42 Living with Aphasia and Epilepsy 08:22 Challenges in the Workplace 16:28 Pursuing a New Career in Media 26:49 Raising Awareness About Aphasia 01:55 Introduction to Tom Ryan Elliott 02:25 The Life-Changing Accident 04:38 Living with Aphasia and Epilepsy 08:22 Challenges in the Workplace 11:12 Pursuing a New Career in Media 16:18 Raising Awareness About Aphasia 25:31 Future Plans and Final Thoughts
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
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 MentalHealth Handbook; Head Injury, A Practical Guide; The Brain Injury Workbook and, more recently, Recognising Asperger’s Syndrome.
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.
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.
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"
ABOUTSAY 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
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
International Aphasia Awareness Campaign with Claire Bennington
In this episode of 'Tip of My Tongue,' hosts Rob Edwards and Jonathan Hirons speak with Claire Bennington, chairperson of the Australian Aphasia Association and an experienced speech and language therapist. Claire shares her extensive experience working with adults with Aphasia, details her involvement with the Australian Aphasia Association since 2018, and discusses her PhD project, which focuses on co-designing a unified international Aphasia awareness campaign. The conversation covers the current fundraising initiatives, the challenges of raising awareness for Aphasia, and the ways listeners can get involved. Claire also highlights the importance of global collaboration and multi-language accessibility for the campaign materials aiming to make a significant impact on Aphasia awareness worldwide.
00:00 Introduction to the Podcast and Guest 01:24 Understanding Aphasia 02:01 Claire Bennington's Background and Role 03:47 Challenges and Activities of the Australian Aphasia Association 06:19 Fundraising Efforts and Campaigns 09:03 Global Aphasia Awareness Campaign 17:29 Conclusion and How to Get Involved
To donate to Claire's Just Giving page, click here:
Overcoming Aphasia: Robert Baldock’s Journey and Advocacy
This episode of 'On the Tip of My Tongue' features Robert Baldock, a Scottish-based composer and new media artist who experienced a severe ischemic stroke in 2017, resulting in acute aphasia and severe verbal dyspraxia. Robert shares his journey through his stroke, the challenges he faced with communication, and his path to recovery. He discusses his innovative use of technology and alternative communication methods, including a synthetic voice developed from his radio recordings. Additionally, Robert talks about his advocacy efforts for the reinstatement of the thrombectomy procedure in Scotland, demonstrating his resilience and commitment to helping others. For more information on strokes and aphasia, listeners are directed to several helpful resources.
00:00 Introduction to Robert Baldock 00:50 Understanding Aphasia 01:33 Robert's Stroke Experience 03:26 Life After Stroke 07:09 Communication Challenges and Solutions 08:43 Advocacy and Campaigning 09:33 Conclusion and Resources
For more information about Robert and Andy Fielding (AKA MC Zirconium) is on their website
Join us as Graham Hall shares his inspiring journey through music and Aphasia in our newest episode of "On the Tip of My Tongue". Learn how his passion for percussion and songwriting helps him overcome challenges. Listen today! 😊 #Aphasia #MusicHealing #Podcast
Living with Aphasia: A Journey Through Music and Recovery
Rob Edwards and Jonathan Hirons discuss the impact of Aphasia following a stroke experienced by Graham 10 years ago. The podcast, titled 'On the Tip of My Tongue', complements a film about Aphasia made by Jonathan. Aphasia impairs language skills and affects 350,000 people in the UK, yet remains relatively unknown. Graham shares his journey of adapting to life post-stroke, highlighting his transition from performing with Opera North to creating music and lyrics to aid his recovery and raise awareness. The discussion underscores the therapeutic power of music, the struggle with word-finding, and the broader impact of Aphasia.
00:00 A Life-Changing Stroke 01:03 Introduction to the Podcast 01:22 Understanding Aphasia 01:59 Personal Journey with Aphasia 03:20 Musical Career and Aphasia 05:02 Creating Music with Aphasia 07:48 Future Aspirations and Reflections 11:49 Conclusion and Resources
Aphasia in Popular Culture and Awareness: Exploring the Silent Struggle
In this episode of 'On the Tip of My Tongue,' hosts Rob Edwards and Jonathan Hirons delve into the world of Aphasia—a condition caused by brain injury that significantly impacts communication abilities. They discuss its portrayal in popular culture, specifically referencing a character with Aphasia in the detective series 'Department Q.' The hosts highlight the importance of Aphasia awareness, especially during June, the designated Aphasia Awareness Month. They share insights about various types of Aphasia, mention notable individuals like Maurice Ravel and Bruce Willis who have faced the condition, and the impact and advances in therapy. The conversation also touches on diverse topics including a musician friend, Graham Hall, and a nostalgic reflection on Rob's appearance in 'Doctor Who.' The episode underscores the significance of awareness and community support in understanding and managing Aphasia.
00:00 Introduction to the Podcast and Hosts 00:45 Understanding Aphasia 02:05 Aphasia in Popular Culture 04:51 Interview with Graham Hall 07:27 Famous People with Aphasia 14:37 Rob's Doctor Who Experience 19:58 Podcast Growth and Listener Demographics 21:23 Conclusion and Resources
Life in the key of Aphasia - https://grahamhall.bandcamp.com
Navigating Conversations with Aphasia: Insights from Iain Stansfield
In this episode of 'On the Tip of My Tongue,' hosts Rob Edwards and Jonathan Hirons explore the intricacies of living with aphasia through a conversation with Iain Stansfield and Dr. Suzanne Beeke. Iain shares his personal journey following a stroke, emphasising the challenges of communicating with aphasia and the impact on relationships. The discussion delves into experiences from the 'Better Conversations with Aphasia' therapy group, a program developed by Dr. Beeke at UCL. Key points include the significance of video reflection in improving communication strategies and the evolving dynamic between individuals with aphasia and their partners. Listeners are encouraged to support the podcast and can find more resources at stroke.org.uk, sayaphasia.org, or the NHS aphasia page.
00:00 Understanding Aphasia: A Shift in Conversations 00:34 Welcome to 'On the Tip of My Tongue' 02:33 Introducing Iain Stansfield 03:06 The Therapy Group Experience 04:42 Reflections on Communication Challenges 06:40 Impact of Video Reflections 07:37 Changes and Insights Post-Therapy 10:49 Future Directions and Final Thoughts 12:33 Conclusion and Resources
In this episode of 'On the Tip of My Tongue,' hosts Rob Edwards and Jonathan Hirons delve into the life of Dan Sutton, who suffered severe head injuries from a cycling accident in 2016. These injuries resulted in Aphasia and mobility challenges. Despite his struggles, Dan founded the Minds Over Matter Social Group to create a supportive community for individuals with brain injuries. The episode explores Dan's daily routines, his love for social activities, and how he navigates the complexities of living with Aphasia. Listeners learn about the significance of shared experiences and community support in overcoming adversity. The hosts also highlight the importance of raising awareness about Aphasia, a condition that remains relatively unknown despite affecting 350,000 people in the UK.
00:00 Understanding Brain Injury and Aphasia 00:23 Introduction to the Podcast 00:41 What is Aphasia? 01:19 Dan Sutton's Inspiring Journey 02:07 Daily Life and Challenges 02:44 Social Activities and Hobbies 04:10 Struggles with Reading and Audio Books 05:54 The Power of Community and Support 09:10 Singing and Aphasia 10:14 Conclusion and Resources
Breaking Barriers: Disability Awareness and Inclusion with Sarah Petherbridge
In this episode of 'On the Tip of My Tongue,' hosts Rob Edwards and Jonathan Hirons discuss the challenges and misconceptions surrounding disabilities, particularly aphasia. They are joined by Sarah Petherbridge, a disability trainer and speaker who shares her experiences of living with profound deafness and working in the corporate sector. Sarah emphasizes the importance of creating inclusive workplaces and the need for a shift from diversity initiatives to genuine inclusion. She discusses the impact of government policies on disability rights, the importance of technology, and the necessity of changing societal attitudes. The conversation also highlights strategies for small businesses to promote inclusivity without incurring substantial costs. The episode underscores the broader definition of disability and the significant progress needed to close the disability employment and pay gaps.
00:00 Introduction to the Podcast 00:36 Understanding Aphasia 01:13 Meet Sarah Petherbridge: Disability Trainer and Speaker 02:19 Sarah's Journey and Business 03:02 Challenges and Changes in Disability Inclusion 06:17 Employment Gaps and Workplace Adjustments 19:39 The Role of Technology in Disability Inclusion 20:30 Social Perceptions and Personal Experiences 31:29 Future Outlook and Final Thoughts 32:51 Conclusion and Resources
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
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
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
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
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
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
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